Dan has been digging into ME/CFS, fibromyalgia and other recovery stories longer than anyone else.
We hear more and more now about people recovering from chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), and similar diseases but when Dan Neuffer recovered over a decade ago, he’d never heard of anyone recovering from these diseases.
It didn’t come easy. At his worst during his 7-year journey with ME/CFS, Dan was bedbound and saw no hope of ever recovering. Over time, though, he fully recovered using a protocol he developed after studying the diseases. When about 10 years ago he started interviewing people who had recovered he was the only one I knew doing that.
Using the ideas he’d gained from his research and his own experience, Dan wrote “CFS Unravelled: Get Well By Treating The Cause Not Just The Symptoms Of CFS, Fibromyalgia, POTS & Related Syndromes” in 2013 and it was a hit – quickly reaching the top spot in its category on Amazon.
Karen Lee Richards, the founder of the National Fibromyalgia Association wrote that after studying these diseases for 25 years she felt that Dan had done ‘the best job I’ve seen to date of putting all the pieces together into one comprehensive explanation. His hypothesis clearly explains why such a variety of “causes” or triggers can all result in the same illness.” Since it was published, the highly-rated book has garnered over 400 reviews on Amazon.
Since then, Dan published “Discover Hope: 7 Steps to Discover Hope and Cope Better” – which is now available as a free download from his website.
Over time, Dan created the online ANS Rewire program, which has been highly touted by medical professionals. Dan doesn’t believe there’s a one-step-fits-all approach to these diseases. Instead, his approach blends three facets together in unique ways for each individual:
- Biomedical – hormonal, nutritional support, treating physical dysfunctions and infections
- Mind/Body – neuroplasticity of the mind, psychological stressors
- Somato-Neurological – neuroplasticity of the body, physiological stressors, somatic feedback
A three-part video series, “Learn How Recovery Is Possible“, provides a good introduction to Dan’s ideas. Dan has also contributed several, at times provocative, blogs to Health Rising over time.
- A Reluctant Patient: How Dan Neuffer’s Medical Past Almost Cost Him His Life
- A Positive Prognosis for CFS/FM/POTS. (Does it Help?)
- When Retreat Means Advance: A Recovered Chronic Fatigue Syndrome/Fibromyalgia Patient Looks Back
- Nobody Knows What Chronic Fatigue Syndrome / Fibromyalgia is Really Like (Probably Not Even You)
- Do People Really Recover From ME/CFS and/or Fibromyalgia? An Inquiry
- Unraveling the Cause of Chronic Fatigue Syndrome and Fibromyalgia? Recovered Author Asserts Single System to Blame
The Interview
As you’ll see in this 4-part interview series, Dan, a former physicist, has thought deeply about ME/CFS, fibromyalgia, etc. recovery, how and why it happens, and how possible it is. The long interview – about 2 1/2 hours (!) – will be released in segments over the next month.
In the first part, we talk about Dan’s descent into ME/CFS, some of the bizarre symptoms he experienced, why he resisted being diagnosed with the disease, how ill he got, and how he came up with his conception of ME/CFS. (Please try to ignore my attempts to keep my energy up by eating something as the interview proceeds!)
Part I
- 0:00:17 – Introduction – Dan’s Journey from Patient to Advocate to Program Creator
- 0:08:26 – Deeper dive into Dan’s experience with the illness
- 0:28:54 – Dan talks about how he formed his explanation for the illness
- 0:35:21 – Dan shares his experience of recovery
Links to recovery stories:
- Health Rising
- Dan Neuffer’s YouTube Channel:
/ @cfsunravelled1
Health Rising is not affiliated in any way or receive any funding from ANS Rewire
The ME/CFS and FM Recovery Series Interviews with Dan Neuffer
- Dan Neuffer on Recovery From ME/CFS and Fibromyalgia: Pt. I – Dan‘s Illness Experience
- The Dan Neuffer on Recovery From ME/CFS and Fibromyalgia Pt. II – Broad Themes and Why He’s Stopped Counting Recovery Stories
- Dan Neuffer on Recovery From ME/CFS and FM Pt. 3: Who Can Recover?
- Dan Neuffer on Recovery From ME/CFS and FM Pt. 4: “Stop Trying So Hard to Recover!”
Really disappointed to see this on healthrising. Dan is a con artist. ANS rewire is akin to the lightning process and other unscientific & fraudulent “treatments” that have been repeatedly disproven. I purchased it early on in my illness & regretted it.
Hi Lisa, I’m actually happy to see this on HealthRising even though Dan’s program didn’t help me much. I ended up working through 6 different brain retraining programs before I found a combination that works for me and this combination works incredibly well:
I can shift from fatigue to feeling 100% well within 30 minutes and I can stop a PEM episode after it has already started.
Like I said this wasn’t through Dan’s program, but I know of people who recovered using his program as well.
Our nervous system controls most of the processes in our bodies and when we learn how to influence the nervous system it’s amazing what we can do.
Can you tell us what program worked for you? And what were some of the other programs that you tried?
Hi Janet, what moved the needle the most for me was a program called CFS School, but as I have mentioned on another comment it probably wouldn’t have been the same without learning and experience that I accrued through other programs.
I prefer not to list programs that “didn’t work” because they did work for other people.
Thank you so much for your reply. I have also tried a couple of programs that did not work for me. I had pretty much given up on that sort of thing, but your comment makes me think that it might be worth trying something different.
We get such heated response on this topic! I got that it didn’t work for you but I’ll bet that you’ve probably tried many other things that didn’t work for you either – but which did work for other people – but which you didn’t label as “fraudulent” or a “con job”. You recognized that different things work for different people and moved on but apparently in this case, it’s different – it’s “fraudulent”. If you check out Dan’s story you will see that he was quite ill.
There is ample anecdotal evidence and now there’s study evidence that these types of efforts can be helpful and recovery stories are being posted virtually every week from people who have benefitted.
You can ignore them if you wish but Health Rising’s commitment – to try and provide opportunities for relief – means we won’t. I made a promise to myself a long time ago that if there’s evidence that something helps some people that I would relay it. That’s why Health Rising posts all sorts of recovery stories – from mind/body to nutrition to drugs etc.
I do want to clear up something. Dan’s program is not solely mind/body. It also includes using diet, supplements, etc. if that is what a person’s situation calls for.
This is the last comment, by the way, that is going to be allowed through that is personally denigrating to Dan or anyone else. We want people to share their experience but the ugliness- no.
Thanks for taking a stand Cort!!!
Thanks for supporting that stand, Karen! It helps! 🙂
Call it what you want but this kind of thing discourages research into actual science based treatments & perpetuates the narrative that those ill with ME/CFS are at fault for it and could recover if only they tried harder. It encourages gaslighting of ME/CFS patients and mistreatment by medical professionals. These treatments have also been repeatedly proven to be ineffective.
I have really appreciated the service healthrising provides the ME/CFS community, but right now I’m debating if I want to continue my monthly donations. I’m not sure I can, in good faith, continue to donate to a source that endorses this kind of thing.
Fair enough. This is a difficult area for sure but this “these treatments have also been repeatedly proven to be ineffective.” is not true at all.
From an independent study of Ashok Gupta’s Amygdala and Insula Retraining program
“Results showed a significant decrease in participants’ fatigue and a significant increase in their energy after the 3-month AIR intervention. Additionally, the AIR group experienced more significant outcomes than the active control group. The AIR group demonstrated a fatigue reduction effect size four times that of the active control group, and the absolute reduction in mean scores for the AIR group was more than double that of the control group.”
https://pubmed.ncbi.nlm.nih.gov/37492483/
The same program in fibromyalgia by independent investigators found a physiological effect
” In conclusion, these results suggest that MAIR, as an adjuvant of treatment-as-usual (TAU), appears to be effective for the management of FM symptoms and for reducing BDNF levels in serum.”
https://pubmed.ncbi.nlm.nih.gov/33050630/
There’s a lot of bad science out there. I can’t see enough of either of these papers to get an idea of their quality or if any of their outcomes were more than subjective statements. (Rewire programs encourage participants to deny that they are feeling fatigue, so were patients just denying that they were experiencing fatigue when asked?)
Also, obviously this can’t be blinded, so that may influence results as well. (Participant spent a lot of effort on this so they want to believe it helped, etc.)
It’s a degree of your animosity towards those kinds of treatments, Lisa that you – who have written about research and have taken long COVID researchers to task for ignoring the research on ME/CFS – would make such a comment without any basis and without bothering to checking the scientific literature.
And now you’re making statements like “encourage participants to deny that they are feeling fatigue”. I sincerely doubt that Dan, who was very ill, would suggest that. If you chose to listen to the interview at some point you’ll find that Dan talks about his own failed efforts to mindfully overcome this disease.
You also choose to ignore the fact that a biological factor – BDNF – was significantly reduced in people on the program in the FM study.
I’m sorry Cort, but this comment is ignorant in more ways than I care to address at the moment. Anyway, I’ve cancelled my monthly healthrising donation. Please just consider how harmful this is to the community. I’m out & I wish you all the best.
While I understand the worry about going back to the bad old days I don’t have it. I would probably agree with you it was 10 or 20 years ago and governmental organizations in the UK and the Netherlands were spending oodles of money on CBT studies containing hundreds of patients and ignoring the biology.
We’re just not there anymore and haven’t been for quite some time. The Netherlands has abandoned GET and is championing biological research and the UK – which is producing a lot of good research – has turned away from behavioral research. The only mind/body studies that are getting funded are small and they are not producing cures. They’re simply finding they can help. Researchers are not saying that ME/CFS is all in your head. Nobody has really said that for years. Things have come back to earth.
US funders never embraced CBT/GET and have focused almost entirely on biology. That has not changed – indeed the biological studies are getting more and more results – we’re clearly getting closer.
Meanwhile as some of the comments indicate these programs are helping some. This is not so different from any other approach – something that really helps one person doesn’t work at all for others. Nothing works for everyone.
I must say that the studies you mentioned are low guality and based on amygdala retraining Gupta (basesd on anxiety!) and FM. We talk about ME/CFS/POTS not FM or anxiety.
So i can understand Lisa.
That said i believe in the ANS dysfuction. With breathing training and meditaion you can win health but it is definitely NOT a cure! There can be a lot of other factors why Dan is better now. I know some people too. I am very happy for them!
In addition, I come from Europe and know everything about the situation in the Netherlands regarding ME/CFS/POTS and long covid. The studies that are now being done are under the authority of psychiatrists and psychologists. Some of them want to prove their biopsychological model, the medical world still sees these diseases as psychosomatic. Don’t be fooled by the studies that are now being conducted in the Netherlands. Don’t expect much from that. Unfortunately.
If you want to write a blog about the situation and studies in the Netherlands, please be well informed.
Fibromyalgia and long COVID actually. I’m sure you know the situation in the Netherlands better than I do but I was referring to this report from the Dutch Health Council – a governmental science advisory board
Stating that “Treatment(s) cannot address the causes of the disease”, the entire group – CBT proponents and opponents, surprisingly – agreed that CBT/GET was not getting at the cause of ME/CFS.
The first sentence in the Conclusions and Recommendations section was “Scientific research on ME/CFS is needed to serve patients better”.
The Committee recommended that the Minister of Health, Welfare and Sport commission “a long-term, substantial research programme on ME/CFS“.
https://www.healthrising.org/blog/2018/03/22/dutch-cbt-chronic-fatigue-syndrome-cbt-get/
I looked up Bleijenberg’s citations on ME/CFS- 9 papers between 2018 and 2020! He was roaring! Nothing after 2020. I’m sure there are others but he’s the one I remember.
I know everything about this Cort. Let me tell you one thing. The board give advise. There is some money. The psychiatrists and psychologists are leading the studies. Inform you well contact David Tuller.
I have the two names for you Cort:
prof. dr. J.G.M. Rosmalen
Dr. J.A. (Jos) Bosch
They are leading the studies
Blijenberg is gone , i hope 🙂 LOL
From someone who recently took Dan’s programme at no point did tell anyone to ignore their fatigue. What I understood was to not ruminate on various conditions of the illness or give energy to it which doesn’t help. Having a different perspective can change the intensity. In fact he says to work within your own physical envelope and not push beyond it and trust me when you have daily chronic pain and on strong daily pain medication for 7 years which I am now no longer on there is no false belief going on.
I found Dans ANS program to be very helpful. His recovery stories really pulled me out of the depths and gave me a belief that I could recover fully. Like Dan, those stories were the first time I heard others describe the long list of symptoms I was experiencing. I can’t express the relief I felt at finding people like me, I didn’t feel so lost and alone. I hadn’t heard of anyone ever recovering and my local gp, very helpfully, told me to go home and learn to live with the pain. My pain, thankfully, is almost completely gone now.
I too was bed bound for a period of time and those days were very tough. Walking felt like moving under water, it was a huge effort just to go to the bathroom, it felt like I was moving in slow motion.
I’m at about 85-90% now and I plan on making it all the way to 110%!
I take full responsibility for not making the full recovery yet and I know it’s because I haven’t been consistent enough in making the changes I need to.
I’m not comparing myself to anyone else’s recovery because I’m unique and no one has exactly my life, personality etc. I’m very grateful that I stumbled on the ANS program and glad Dan is still helping others to recover. It may not be for everyone but it’s helped me enormously.
Wow – amazing, Susan – congratulations! Here’s to 110%!
Hi Cort. Thanks for sharing these videos. I really don’t think you should spend a lot of time responding to some of these people. Not a good use of your time.
For some of these people, their closed minds and negativity are the reason they are sick after many years.
I think for some people it is difficult for them to accept that their actions got them sick and they now have to take responsibility for getting themselves well.
When I accepted, fully believed what had got me sick, what was going on with my nervous system and that only I can get me well again, things began to happen.
Best wishes
Quote – “Their closed minds and negativity are the reason they are sick after many years”. Stuart, gaslighting and name calling like this is what makes us feel so strongly. Perhaps you should open your mind to the possibility that not all of us can recover from brain retraining. Cort has not recovered. Does that make him close minded and negative too? I can not believe that you have had the audacity to write this in a forum full of ME/CFS patients and you wonder why we react so strongly. So, according to you is it our fault that we remain ill? It comes across you think that way. Or perhaps we are histerical or have an yappy flue? Now do you see how your coment can be so damaging and triggering for someone who’s done everything possible to try and regain their health and yet nothing’s worked? Not helpful Stuart, not helpful at all.
Is not the patient’s fault he got sick but is the patient responsability to get better. There are elements that got someonensick, elements that keeps someone sick and elements that get someone towards full recover. All of these can be analyzed separatly or how they influence each other. As we look deeper into the root cause of why we got sick we see there there is all sort of elements that contributed there. There are important to look at those with an inquiry mind not with blame or shame. Recovery when that journey is decided is a hard journey. Is not easy and is not simple. Is not even quarateed. But the field of neuroplastisity and brain retrainings as ANS Rewire can give us a blue print of how to create the recovery map. It took me a whole yearr to regain my health and I am extremly thankful to Dan for his help.
Alexandra why do you assume that patients that have not recovered have not done everything possible to regain health? Is this patients blaming again and gaslighting? You had the illness for 3 years. We know alot of people who had spontaneous recoveries within the first three years. We know of people who just rested for an year and recovered. Don’t think you know it all and your way of recovery should be everyone’s. There are alot of people that recover from cancer and others that dye. Are you going to say that they did not take their recovery seriously and this is why they passed away. This is so unhelpful.
Of course I am not assuming all the things you asked me. I even said the result is not quaranted. I said these are areas to be explored by people that believe that they can have an influence over recovery. Of course that category is not the whole pool of people that are sick. There are different theories and different responses to them. Same in all fields of medicine or responses to treatments or drugs. What is happening herenl is the offering of an avenue and some of us that took that avenue had the desire result. As long as we keep the mind flexible we can grow in understanding and give hope to so many. I wish you all the best in your health journey.
Alexandra why did you feel the need to address me? You appear to be commenting on every person’s remark that disagrees with your narrative. Calling people that have been ill for decades close minded and negative is so damaging for those suffering. Comments like Stuart’s is what makes us all angry and you felt the need to defend it? Why? Do you also think that it’s our fault that we are still ill? That perhaps we are not doing enough to recover?
Hi! I replied to you because you asked me 5 plus questions in each if your coments and also made assumtions of what I meant to say. No, of course is not someone’s fault they got sick. I never said that and that was cleary said from my first comment and was what I did not agree with in the gentelman’s comment before me. No, is not someone’s fault. Is not about blame here. Blame is not the same as responsability or influence. This is the clear difference I tried to make. There are so many angles into looking into the possibility of recovery. We need to be open to any of those possibilities. Other than that all I cam say for certain is that neuroplastisity as a field and brain retraining as part of a total multi lateral approch (not by itself) is what helped me get my health back. I tried 60k worth of treatments before. This is my story and my truth and I respect everybody’s story and suffering from this illness. I truly wish you all the best in your journey bacl to health. Be well. Alexandra
Alexandra, stop pushing your ideology -“If I can do it, you can do it too.” I did not engage with you and don’t need or want your comments. I have spent more than you and have been ill for longer, and yet I don’t assume I know it all. I have also “recovered”, but I don’t push my recovery on anyone. And whether it’s a recovery or just remission we don’t know do we? So be happy with your recover and accept we are all different. What works for one might not work for another. I did not engage with you in the first place so I will not respond any more.
how dare you blame patients for their own sickness
I can’t say this for the participants in the study, but when I was on the couch and couldn’t even sit and I used a 15 minute tool, I was then able to sit. I used it again, and now I was feeling good while sitting. I used another tool and I felt so good that I got up from the couch and started thinking “what shall I do today?”
I couldn’t go from barely being able to keep my eyes open to being up and about just because I was denying that I was fatigued.
Maybe I’m an exception? Except I know other people who are also feeling better, able to go out after being housebound, able to go on walks, lift weights, work.
I think the evidence in the scientific literature for ANS Rewire and similar programs is very weak. The studies you pointed to were published in low-quality journals (Hindawi and MDPI are the parents of those journals and have questionable review standards and are of low scientific value). I don’t think it’s fair to scold someone for failing to review the scientific literature when the aforementioned “scientific” literature is of such poor quality.
You have such excellent coverage otherwise. But this was disappointing to see.
Except for the really well known journals I wouldn’t know about the quality of the journals – I was looking for overall reviews of the literature. Brain Imag Behavior from Springer is not a quality journal?
My guess is that few people have actually perused the literature and that “pseudoscience” is this kind of vague term that gets tossed in to make their point. Quite a few studies do show effects.
https://pubmed.ncbi.nlm.nih.gov/31579851/
By contrast, mindfulness-based pain relief after extensive training (greater than 1000 hours of practice) is associated with deactivation of prefrontal and greater activation of somatosensory cortical regions, demonstrating an ability to reduce appraisals of arising sensory events. Isn’t that something that would help in a disease in which one is just pounded with painful sensations?
https://pubmed.ncbi.nlm.nih.gov/29466242/
The interventions fell into the following three categories: mindfulness, most commonly mindfulness-based stress reduction (six studies); Kirtan Kriya meditation (three studies); and mindfulness-based Alzheimer’s stimulation (one study). Three of these studies were randomised controlled trials. All studies reported significant findings or trends towards significance in a broad range of measures, including a reduction of cognitive decline, reduction in perceived stress, increase in quality of life, as well as increases in functional connectivity, percent volume brain change and cerebral blood flow in areas of the cortex.
This one might be better. A systematic review from Neurosci Biobehav Rev
https://pubmed.ncbi.nlm.nih.gov/28797556/
Searches of PubMed and Scopus databases resulted in 39 papers, 7 of which were eligible for inclusion. The most consistent longitudinal effect observed was increased insular cortex activity following mindfulness-based interventions. These findings suggest that mindfulness interventions are associated with changes in functioning of the insula, plausibly impacting awareness of internal reactions ‘in-the-moment’.
.
Thank you for all you do! It’s a very tough job dealing with severely ill people and their emotional instability. Everyone has up and down days and sick people are even more volatile. Thanks you for taking the time to respond to people with facts, whether they like them or not. Others coming along reading afterwards can see the signs of anger and frustration way out of proportion for the discussion. A good part of it is not comprehending what they read. The anger is focused on you because you are handy. Don’t take it personally. Empathy is critical with these diseases.
Yes – Dan and I noted how almost all the upsets were around things he’s not doing and proposing! Thanks for the advice not to take it personally! That never works does it?
Thank you Lisa for articulating my thoughts so succinctly. The recent research on the biological aspects of our condition (WASF3 paper) give me hope.
This on the other hand does not. Very disappointing to see this promoted here.
I am always surprised at comments about the ‘biological aspects’ of this illness in relation to discussion about ANS dysfunction.
Of course it’s a real physical illness and not imagined. Of course there are many ‘biological’ dysfunctions – I would have hoped we are long past this idea of the illness being in our head or that we can make it go away with a positive attitude or positive thinking.
And I am always surprised when ANS dysfunction is conflated with the biological aspects of a disease. Interesting that you felt the need to respond to. Y comment Dan. Thank you though, the tone of your response speaks volumes.
Sorry if you were offended – not intended.
My point simply is that I am in no way suggesting that there aren’t ‘biological’ dysfunctions which I know that some folk do. (the old it’s all in your head argument)
I appreciate that not everyone is convinced that ANS dsyfunction explains why there are so many varied dysfunctions and why and how people come into the illness in different ways.
Hi Dan, it would be great if – besides your program and recovery stories – you would also give attention to the (severe) Patients that don’t benefit from these therapies.
It’s harrowing, people die (or give up), and otherwise spent many many years in bed in dark rooms in agony.
As ex Patient, I would wish you would give attention, because you are influential, do you have the experience, and you have the energy to give attention to medical negligence of MECFS (and LC) patients.
Things need to change and hopefully fast because it’s a hard, hard life.
Cheers
Appreciate your sentiment here Arvi!
So, I have seen many really severe folk recover and the support they benefit from (along all the usual strategies) does seem to vary.
My biggest concern is for the folk who cannot tolerate any stimulation. I have personally had a reasonable measure of that experience and must say it’s pretty distressing and makes moving forward challenging.
At times I have been motivated to take a deeper dive into the biochemistry, however, that’s a big challenge and would require a team including physicians experienced in the use of psychotropic medications and orthomolecular medicine.
I have asked about these mechanism around the stimulation intolerance in my discussions with neuroscientists, but frankly have found the answers unsatisfactory.
The day someone tables a deeper understanding of this and SAFE interventions would be welcome by many people in our patient community!
I you want, just SPEAK up, about the reality of MECFS. Advocate for the – severe – patients. On Social media, etcetera.
You have credibility, lived experience, and a voice and energy.
(All Things we patients don’t have).
Brain plasticity and a multi/holistic approach, can have value for patients. Specifically a subgroup. Possibly the group that has been able to halt PEM, the most debilitating Key Symptom, but I’m guessing.
I myself – as an example, n=1 i ve done a plethora of holistic body mind therapies in 15 years, incl Gupta (but to be honest, no experience with your program).
Results: progressively getting worse.
Anyway all these programs in recovery stories create this false narrative for the outside work that MECFS is 100% curable for all, therefore case solved.
That could not be farther from the truth. And it has dire consequences: minimal funding & therapies, no public interest leading to little perspective for a large often most chronic & severe group.
I’m not blaming you for this, but there are plenty of ex-patients out there with their programs, claiming to have found the Holy Grail.
Take the example of Professor Garner, who was ‘cured from LC / MECFS’ – after 4 months, with the Lightning Process with help of ex-patient Live Landmark. He is very public and vocal about it. Just check Xtwitter.
It’s sad, but it s actually the cured ex-patients that often do us the most disservice.
So if you would speak out loud about our suffering – incl the fact that Brain Retraining has limits as a cure – especially for a subgroup, that’s been left behind MIA, and POW from ME CFS.
This would be a huge service and help us to get real help from our doctors, insurance, companies, and governments.
Cheers
I totally understand how you feel and hear you.
We often think that the lack of help and resources, lack of research is unique to this group of illnesses. But the more experience I have, the more I see similar problems across the board.
It seems clear to me that research and treatment innovation is solely about commercial outcomes.
This is why effective medicines that go off patent often tend to fall into obscurity when they want to market a new product, even if it is more effective then the new one. If we cannot find a new pill, little interest is shown.
Perhaps that sounds cynical – but if you look how virtually all medical researchers are funded it becomes clear. How many of them disagree publicly about the use of different medicines that have been shown not to be effective? Speaking up tends to mean unemployment!
Thank you Tia
lisa you are right, this is an absolute bullshit (comment edited – bullshit was enough!) and im glad you had the courage to say so
this site has lots of coverage of actual science so i do thank cort and team for the actual good work there
this is pesudo blah blah the like nervous system is a thing bollocks
real medicine now thanks
Cort, I just want to say thank you for being willing to engage in this area in spite of the inevitable animosity from people who are sick and traumatised. That was me too in the past. I have now recovered, not through Dan’s program but through nervous system work which I studied from many different programs and coaches. I just kept seeing so many recovery stories that I couldn’t dismiss it completely any more. I was skeptical but also open-minded. When I dived into the topic I could see why it “doesn’t work” for some people – an individual approach is necessary and I learned how to tailor the programs to fit my unique self (with the help of my coach).
I do understand people’s strong reactions, because there is so much medical trauma in this community. Anything that even hints at the mind and body being connected is super triggering for people who have been disbelieved and gaslit for years. But as you rightly say, these programs really aren’t doing that any more. Things have moved on hugely in the last ten years. The programs absolutely don’t encourage you to lie to yourself or deny your experience (that’s a mistake that happened in the very early days of the lightning process but things are different now). Most of the programs are more about learning to validate and sit with your experience, while also choosing to focus on what is good and not remain trapped in fear. This work truly is changing thousands of lives and I see it all the time. I’m so grateful that I was able to remain open and curious in Spite of the undeniable traumatised part of me that wanted me to dismiss it all. Thank you for also being open and curious Cort! ❤️
Thank you Christine – glad to hear you’ve done so well! It’s inspiring!
I agree with everything you have said Lisa.
Disappointed in Cort & Health Raising.
You may other pathogens, infections, and fungi in your gut. Calling him a fraud because it didn’t work for you ? There’s 1000scof people that his program has helped them. Are you calling the patients fraud too? Lol
Lisa – I am happy to see Dan’s programme on here. As a person with fibromyalgia for 7 years and chronic daily pain his programme has helped me significantly. At no point did he ever say the programme promised to cure all. But for the minimal cost of the programme even if you took it purely as an educational programme it has emmense value for those suffering from these illnesses to gain more knowledge and tools to make proactive decisions for themselves.
Well said
❤️
Thanks for your thoughts Karen
I’m doing Dan’s programme and have certainly found it helpful. I have a first degree in biology and then went on to train as a psychotherapist so the unity of mind and body has always interested me. My take is that the mind vs body war is essentially bogus. There is nothing in the mind that is not also simultaneously a biological process in the brain. Just because we don’t understand all the biological sequelae of thought doesn’t stop that statement from being true. I chose Dan’s approach because he refuses to honour the mind/body split. Unfortunately, it is so well established that it is hard for people to see that there are no sides – unless they are two sides of the same coin. We need to stop honouring Descartes and start bigging-up Spinoza – he got it right but also came in for a fair amount of persecution.
Thank you, well said David.
I think the whole use of the world ‘mind’ is what creates this divide. It would probably be much more helpful to simply speak of brain or neurological dysfunction.
Mind/body conjures up images of some kind of magic ethereal force, mind of matter and this kind of thing. Nobody talks like this in relation to other neurological illnesses!
I fully recovered from CFS with a multi lateral approach that included ANS Rewire program. Dan’s passion and heart is showed in all his interviews in all the content of his program. The ANS program is very different than Lighting Process by Phil Parker if that is something important for you to know. But Phil Parker is also doing very important work for 25 years by now on CFS reserch and recovery. Neuroplastisity is a fascinating field in medicine and with talks like this more light is added on its importance as a tool (not the only tool) for the recovery of invisible illnesses as CFS. I wish everybody the best in your journey back to full health.
Thanks for sharing Alexandra
Disappointed to see this here as you are usually more science based. (Portion of comment removed). For example in one of his forums a few years ago he claims to cure people with strokes without medication. Irresponsible. What next? a nice chat with Phil Parker? Some tarot readings? As a pwME who has spent decades and loads of money on this “brain training” shit and have not recovered. It’s dangerous and supporting charlatans who take money off desperate people. Please stick with the science and not on things that rip off desperate patients.
Well, I’m disappointed that you’re disappointed, Jay! I’m sorry this “brain training shit” as you put it, Jay, didn’t work for you. I wish it worked out better for me as well but all you have to do is take a look around and you can see that it is helping some people.
I have to say, though, that “ripping off desperate patients” theme always seems to show up with these types of efforts but doesn’t fly. Every program that I know of – from the Ashok Gupta’s Retrainng to ANS Rewire – provides a money back guarantee. If it’s not worth it, you can get your money back. On the other hand, if it helps you have it for life – no need to take expensive drugs or supplements.
I’ve spent ALOT more on other stuff. It’s actually easily been the cheapest part of my treatment efforts.
Here’s from Dan’s website.
“If you don’t feel the program delivers engaging and compelling education to help you understand this illness and take decisive action towards your recovery, you can request a full refund minus the administration fee within 30 days of enrolment. This will be paid upon return of any physical components and the refund request form.”
So, please, enough with this ripping off stuff!
All the programs I’ve seen you can’t get the money back after a certain period, & you have to stay beyond that period to actually try the program.
This was my experience with ANS rewire.
I think it was a 30 day money back but you had to stay for at least 6 weeks or something to get an idea if it was helping or not.
I would have asked for my money back but by the time I had done the program it was too late.
It’s only a real money back guarantee if you can do the whole program then decide if it worked.
This is not correct – I never made such claims and don’t support people with strokes and never have, so this seems a really strange out of the blue comment.
Sorry you haven’t made progress with brain-training – you are not alone in that experience, especially when it’s done in isolation.
There is no guaranteed cure!
I took screenshots Dan. In 2005 on your cfs unravelled site you said to someone called Sean: “Hi Sean – well, you are talking about primarily physical treatments, but a nervous system dysfunction in my view is best addressed directly. That’s what you see with stroke victims and so on, they don’t take pills, they retrain the brain! Hopefully the explanation videos vs will make sense to you.”
Stroke victims absolutely need to “take pills”. Medication at the earliest point is the biggest factor in recovery from stroke and if administered early enough can restore function without the need for physio & “brain retraining” and medication is prescribed to prevent clots and further strokes reoccurring. I was so shocked at your claims that stroke victims don’t use pills but brain retraining I took a screenshot!
Not sure if Cort will moderate this comment as my trust in this site has fallen off a Cliff with promoting this business.
Thanks for clarifying Jay, I appreciate that.
So you can see from the quote that I don’t claim to help people with strokes.
Pretty much everyone takes pill at some stage, and certainly stroke victims are on medications especially immediately after a stroke. That is primarily to stop more strokes from occurring as I understand it.
However, in order for a stroke victim to regain their ability to walk or to speak, they engage in brain-training. This is usually done with a specialised physical therapist.
Hopefully that makes more sense to you now!
I would suggest that brain training with ME/CFS/POTS/Fibromyalgia/MCS is infinitely more complex then in something like a stroke, because it is not about solely retraining for function, instead it is about teaching the nervous system to respond differently to stimulus. Yes physical activity is one stimulus, but there are many many more including blood sugar variation, lights, sounds, smells, pain etc etc.
I get you feel frustrated, this illness is frustrating. And I get you feel frustrated with ““brain training” shit” – you have every reason to, especially if the messaging from such approaches is that ‘there is only one way’ or ‘it’s your fault if it didn’t work’. The reasons why people don’t necessarily respond to a singular brain-training strategy are very varied – understanding that is key to break through. Usually it also has to do with the physical dysfunctions people experience which I strongly advocate for treating in tandem to any brain-training efforts. If there are any severe comorbidities, including both physical or psychological problems that trigger the nervous system, ignoring them and hoping to just fix everything with brain is very optimistic to say the least – very hit and miss.
Jay, even if you have listed to testimonials of people who used such ‘brain-training’ programs, you will actually find that most of them do a whole bunch of other stuff alongside – all for good reason!
I am not against brain-training programs, but I do think that they need to be compassionate and not leave people feeling it was their fault they didn’t recover. I get the sense that Gupta certainly has a compassionate approach – I don’t know about others. Some people definitely recover with such program, I know because I shared their stories – but of course they are not panacea cures – nothing is.
I hope this helps you reconcile it all. Frankly, I was was frustrated with ALL ‘the treatment shit’ because I had tried everyone cure promise of ‘do this or do that’ for years and nothing worked – so I totally understand how you feel.
Hopefully the other parts of the interview will help you fill the gaps a little. If it is all too frustrating and annoying, maybe skip them.
Tia as someone with fibromyalgia could you tell me what triggers the biological aspects of the disease? Does ANS have anything to do with it?
Thank You Jay …. I totally agree with you
I really hope the ANS rewiring conversation can continue without black and white thinking.
I purchased Dan’s program in 2018, did it twice, saw no improvements, but am also glad I tried it and felt Dan had fully earned the ~$300USD I’d paid. The course is ROBUST. I felt Dan truly believed in what he was doing and poured his heart into making something VERY high quality.
He has a perfect voice for meditation tracks (I’m picky) and I still listen to the ones that came with the course.
Unfortunately, I didn’t see a single symptom budge. At a certain point, I began to resent the sessions because I felt I was gaslighting myself to deny the experience I was having. My pain wasn’t reducing, my symptoms were more than bothersome, and all the REWIREing in the world wasn’t making a dent. A big part of the course was “believing” you can heal and it made me feel like it was a personal failing when I lost faith. That part wasn’t great.
However, I’ve had close friends make big strides with similar programs and approaches. I do think there is something to soothing the ANS that can be helpful to some of us. I certainly wouldn’t want to block ANYONE from healing from such an inexpensive approach.
For the most part, I found Dan fairy sensitive and not patient-blaming. He was open about the fact that not everyone succeeds at this. (What I really hate is when someone recovers via brain training and then acts like EVERYONE can. No, sorry.)
The program, while not intended for this, also helped me develop better coping skills for dealing with accepting my disability. I had not asked for help and support prior to his program, but it’s part of the coaching. This made me a lot more comfortable with getting support, and that support has really helped me.
And, I’m STILL interested in ANS training techiques. When I meditate, my silent, gastroparesis’ed stomach will audibly gurgle. I’m curious about developing ANS calming techniques without the part where I have to gaslight myself.
People tend to quickly split into two camps when it comes to these programs, but it feels more nuanced than that. I want to know WHY it works for some people! That will tell us more accurately WHO it might be best for. And I want to adopt some of the practices into my life, even if they don’t fully heal me.
Hey Kira, I would just like to offer some hope here. I worked through six different brain retraining programs (including ANS Rewire) before I found what works for me. It seems that the program needs to “click” with your particular brain and nervous system to work. Also, I learned something new with each program and I doubt that if I took the program that ended up working first, that it would have worked so well. Maybe it wouldn’t work at all. I think I needed to collect the puzzle pieces first.
Thank you Andreja, I fully agree. I would love to hear more about what works for you, and maybe even your thoughts on the other six, if you’re up for sharing!
Sure! It’s not as simple as listing a few things that work for me as you’ll likely have no reference for some of them, but I’ll do my best.
I work with my nervous system (NS) with an assumption that the symptoms are caused by NS mistakenly sensing danger where there is none. So if I can calm down this alarm in the NS, then the symptoms go away. But you cannot calm down a frightened child by being frightened yourself (or impatient or frustrated). So to calm down my NS which is a lot like a preverbal child or an animal, I first needed to learn to be OK with symptoms.
– The right attitude: self-compassion (I took a course on it), acceptance and non-resistance to symptoms, non-fear. These are explained really well in Alan Gordon’s book The Way Out. The exercise he describes (somatic tracking) is excellent for building non-resistance.
– Learning the polyvagal theory and seeing how NS staying stuck in shutdown and freeze states is driving the symptoms. Learning how to shift from shutdown & freeze into safe & social state with polyvagal tools. This learning is both cognitive and on body level – my NS was so stuck it took 6 weeks before it would respond well to polyvagal exercises.
– Connecting with my Self. This will sound very woo-woo, but in IFS therapy there is a Self that emerges when all the protective parts of us are asked to step away. A Self that is defined by Compassion, Creativity, Curiosity, Confidence, Courage, Calm, Connectedness, Clarity, Presence, Persistence, Perspective, Playfulness, Patience. This Self is something that we all embody in our best moments, our most connected moments, but when we’re chronically ill we rarely access it. We forget how to. It is our best decision maker. It is the one that can soothe the scared parts, especially when symptoms flare up – because they will. For me, learning to embody Self was a game changer.
– In the last program that I did (Cfs School) I learned a brain retraining technique that helps me shift fatigue within 15 minutes (it can take longer as well, of course). It’s not drastically different from Dan’s technique, but its effect on me is very different. It enables me to embody a different nervous system state, to go from shutdown (polyvagal state) to safe & social, and when this happens, fatigue drastically reduces. Sometimes disappears. Fatigue was my most disabling symptom, so this was like a miracle to me.
– Learning to notice times when symptoms flare up due to interaction with other people, a painful memory or an inner critic coming up – and learning how to feel and process those emotions instead of shoving them away because they’re inconvenient or I think they’re not important. (Learning to process emotions took quite some time.) Everything that changes the state of the NS is important and can impact the symptoms. So emotions are important – especially those that are suppressed, like mine were.
– Probably the hardest one: unlearn the idea that symptoms are bad and that symptoms mean that I did something I shouldn’t have. Instead, seeing symptoms as evidence that my NS is dysregulated, but not because I actually did something bad, but because it’s afraid of benign things. So my role is not to be afraid along with my NS – my role is to be unafraid, step into my Self and comfort my NS, knowing that I am actually safe and okay, even though symptoms are flaring. This knowing that I’m okay then helps to bring the symptoms down.
There’s more, but I guess these would be the top components of what has worked for me.
Wow! Andreja, thanks for taking the time to explain everything so thoroughly. I don’t know anything about Dan, his book, system, etc. but can tell that a lot of people are triggered by him. I understand those feelings because I don’t feel “understood” by anyone in my life. It is all still very painful, even after all the advancements that have been made in the greater world. But, I am still open to all possibilities. And you make me want to look into these ideas in more so. Thanks again!
I know, the need to be understood is such a deep running need. Personally, I haven’t found any healthy person that would truly understand me, only other CFS patients. I think it’s like this for most of us.
I’m glad you’re open to possibilities and I hope you find something that helps you 🙂
Thanks for this very thorough and thoughtful reply, Andreja!
I actually am familiar with almost everything you mentioned, except CFS School. I did six years of Somatic Experiencing therapy with a big emphasis on polyvagal work. Prior to that, I went through Alan Gordon’s TMS program, and read/did all the (work)books by all the guys in that camp (Sarno, Schubiner, etc.)
I’m aware of IFS but have never looked into it deeply—curious to learn more.
I work on my nervous system a lot, just in a more casual way, borne out of these experiences. I’ll think about your comments and see what fits my situation!
Oh wow you have worked though a lot! Great that you have already looked into polyvagal/somatic side of things 👍 I also did some SE therapy.
I found that a combination of top-down (cognitive + emotional) and bottom-up (somatic) brain retraining worked the best for me.
From the things you have worked on I assume that pain is a big symptom for you? I just read about the Moskowitz approach in a book about use of neuroplasticity in different illnesses (including when a person is born without a part of her brain) The Brains Way Of Healing. It sounded intriguing. HealthRising also has an article on it: https://www.healthrising.org/blog/2019/08/03/rewiring-the-brain-to-get-out-of-pain-the-moskowitz-approach/
Also, since you mentioned gastroparesis: my doctor wanted to send me to a specialist to test me for gastroparesis (our medical system is so slow that I had to wait 18 months for that and got better in the mean time). I lost weight because I could only eat very small meals, couldn’t tolerate any fat because the food would just sit there and even drinking water would leave my stomach feeling full for hours. Eventually I found a herb that kickstarted the healing, but the second part of my healing was regulating my NS in general and interoception exercises (that’s a lot like somatic tracking; training the brain to connect more to the sensations coming from the viscera, but in a non-judgmental way).
Thank you! Yes! Pain is huge, worse than any other symptom, and it’s the symptom I had long before ME. Many people come to ME through a virus but I wonder if I’ve come to it through extreme pain for too many decades.
I tracked down Moskowitz too! He had published a workbook that I went through. (Fun aside, part of the program is boosting anadamide, so I got to chow down on chocolate, which I still do—have found a low histamine brand that doesn’t trigger me!)
I’ve now had my gastroparesis positive tests for 20 years (checked in 2003 and rechecked this year). I’ve also visceral hypersensitivity but I’ve had it so long I think I tune it out? I’m curious what herb helped you.
Thanks for all your thoughtful responses! I’m glad you escaped the worst of the illness. It brings everyone hope.
I’m so sorry to hear about the decades of pain and gastroparesis 🙁
I’m glad that you are at least able to enjoy chocolate for health purposes 🙂
The herb was Acorus calamus (tincture made of root parts). It’s a part of folk medicine in Slovenia where I live and is sold in pharmacies here, but FDA says it’s not safe to take. I also seem to remember reading somewhere that American variety is more toxic than European, but I can’t find it now.
WebMD says “The FDA prohibits calamus use in food products because three of the four species of calamus found in the world contain a cancer-causing chemical called beta-asarone.”
Interestingly, I also found this: “It is a highly valued herb [in India] as it acts as a rejuvenator for brain and nervous system.” – https://pubmed.ncbi.nlm.nih.gov/24824923/
I only took it for about 3 or 4 weeks. I could feel some improvement straight away and as my stomach motility improved I lowered the dose to minimize the risk. This got my stomach to about 50% better and I got the rest of the way slowly as my symptoms improved in general.
As I mentioned, I didn’t end up being tested for gastroparesis, so I don’t know if I had it. All I know is that I had lots of trouble getting the food through my stomach (and also stomach pains which were diagnosed as gastritis – those are also gone 🥳).
I hope you find a solution that works for you 🤗
For me the Moskowitz story exemplifies more than any other the incredible power of these approaches. Not that they are easy or work for everyone – but at times the results are just jaw dropping. 🙂
Yes Cort – jaw dropping indeed. It’s so frustrating to see some people have such shockingly unlikely fast and profound changes and others very slow ones. I have made it a point of studying such cases over the years and gained some insights, but it’s really hard to ‘bottle it’ so that others can replicate it.
Thanks Andreja, you’ve inspired me to look again at brain retraining programmes. I realised something reading your post, which is that, being totally honest here, a part of me didn’t want the brain training techniques to work because to me that would mean that I was responsible for my own illness! Never mind the stigma that ME/CFS has, I was ready to judge myself, especially as it has drastically affected my life for 25 years now. Maybe if I approach brain retraining without beating myself up, I might have more success with it! I have benefitted from vagus nerve stimulation but that seems like more of a physical thing.
Thanks Cort for putting this information out there. I think it’s important to include contentious topics which promote a healthy discussion, as long as we stay respectful of each others opinions.
Oh Nicole, I know this so well! The shame and guilt of thinking that if this is all caused by the brain / NS then that means that I’m responsible for my illness and for the 15 years I have lost. I struggled with this a lot.
With time I realized that just because we can learn how to control a part of our physiology consciously that doesn’t mean that we should have been able to do it all along, without any training. The processes that cause the symptoms are running outside of conscious awareness – how could we be to blame for not spotting them and for not knowing how to influence them? It’s like blaming someone for not being able to consciously control their blushing.
The brain and NS do many things that we normally can’t control, like govern our blood pressure, temperature, levels of hormones etc. We don’t blame ourselves for not being able to control that.
It’s amazing that we now live in a time when some people have figured out how to influence the brain and nervous system through conscious thought and action in a way that can reverse the “stuckness” of the nervous system. We didn’t choose our illness any more than someone chooses a heart attack. But we can use this knowledge to rehabilitate ourselves.
There is no need for judgment. Beating ourselves up just activates the sympathetic branch of ANS which then gets us into fight/flight or, in case of CFS, most often into freeze. And being in these states is antithetical to healing the symptoms.
I’m wishing you best of luck 🙂
Thanks so much Andreja for your wise and kind words.
Well said Andreja
Hi Nicole,
Look, taking responsibility is great where possible, it can be very empowering.
However, what you talk about here sounds a little more like blame!
I think it’s really inappropriate to self-blame, because we don’t seek to become ill and frankly, there are usually so many factors outside of our control that lead up to illness, how could you avoid all these!?
The same goes with recovery. It is not a simple ‘cure’ process to recover despite what some “mind/body” folk or some orthomolecular/integrative/functional medicine practitioner suggest.
So lack of recovery is not from lack of trying or our fault – we must always stay compassionate and fair with ourselves!
Cort and I go into this in some detail in the next 3 parts of the interview – hope you find it helpful
Hi Dan, many thanks for responding. The point I wanted to make is that I hadn’t realised I had internalised the blame that was levelled at me from medical professionals over the last 25 years, here in the UK. Nor that it was preventing me from fully engaging with brain retraining programmes (if it worked, was I proving them right?).
I’m being totally honest and it’s quite painful to admit to it. The reason I posted my realisation is because I wonder whether some of the people reacting so negatively to your approach might have a similar thing going on subconsciously. Now I’m aware of it, I’m keen to give brain retraining another go without the resistance that was there beneath the surface.
Thank for sharing that so bravely.
I think many people will really relate to you here – it kind of gave me goosebumps as I could strongly imagine being in that same scenario.
The mental/emotional journey is really wild – glad you are processing this positively now. ❤️👍
Remember, NOT YOUR FAULT!
Your comments have really highlighted this whole issue around mind vs neurological and why so many folk get offended and think we are talking ‘it’s all in your mind’ when of course that’s the complete opposite of what we are saying.
Nicole and Dan, yes. I think a huge part of this multi-cause suffering is internalized unconscious self-recrimination and self-doubt from decades — in my case lifelong — blame/shame from authorities we were taught were the final word on everthing. These include parents/caretakers, doctors, “successful” peers, grossly uninformed New Cage spirituality pundits and cultlike or Calvinsitic Evangelicals, plus cultic LGATS (large group awareness trainings like Insight, EST, Lifespring etc. ad nauseam). All these toxic allegedly self empowerment groupthink programs have now infiltrated into all large corporate institutional trainings and are causing cognitive dissonance in healthier and ill alike. Carolyn Myss, Louise Hay, and many other New Cagers come to mind. The result or traumatized ME folks is instant add-on layers of PTSD.
Add to this doctors unaware of the ANS disasters, and chemical poisoning from Roundup/Glyphosate farming, and at least 80 thousand toxics added the the world environment since WW2, including moldy housing and car exposures, all mostly unavoidable from lack of public info about all of this.
Ken Wilber, the great philosopher who almost died from this in 2006, writes brilliantly about the blame the experiencer conventional gaslighting disasters in his groundbreaking book, Of Grace and Grit.
In general, people without our exact lived experience, wisdom or a very high degree of emotional intelligence cannot evaluate our unique experiences. Self-negation was wired in too early before we knew what was happening and is therefore tougher to dissolve.
For me, strong helpers along the way include Jeff Foster’s affordable work. Pissed off raging is intentionally made more constructive by using the downtime choosing to channel that toxic rage into broader research to access better supplements, less stupid or greedy holistic and allopathic practitioners, and finding appropriate nutritional bypasses from the 23 test with a good consultant. Prioritizing misperforming SNPs into a few consults with my note taking from the consultant recording reduces the overwhelm of much new into re my particular combo of genetic imbalances. Requires adjustment time.
My confused and partial skill sets grew bolder with gradually increasing assertiveness skills, advocacy info sharing and positive snark. Not recovered because am in process of escaping a mold home that keeps the ANS on red alert. More forward moves are being added on; it is happening for me in ways I can now identify; never give up!
What others assured me was my negativity was actually theirs; this was just an indicator of impatience of mediocre practitioners with my complex healing process and their lack of skill.
Accepting their hell perceptions and questioning everything over time, plus defusing the rational mind despair of “nothing happening” with a “hell if I know” mindset can lead to some interesting life upgrades. The solutions to recovery processing are totally individual, and the esoteric Woo (such as Chinese medicine and energy medicine approaches) can be a complement to true evidence based science when it is not bought and paid for by Pharmakeia.
Hi Kira, thanks for your honest share. I’m thinking about trying the program. Curious, you mentioned you tried the program twice? Since I’m not familiar with the program how much time in total did you spend with it?
Hi Tammy!
The program is really a lifestyle, it has recommendations on where and what to eat, how to sleep, and how to think, so you’re kinda doing it all the time. I actually quit working for six months just to focus exclusively on the program. I was very grateful to my parents for funding the essentials for 3 of those months, and drained my own savings doing the other three.
As far as “active” participation, I watched one video a day (anywhere from 10m to an hour+) each day for about 40 days. I meditated 20-40m per day. I often did a pain track (20m) or a self soothe exercise as well (30m). I intentionally spent a lot of time in nature, often several hours…I can’t remember if that was part of the program or just a me thing.
I felt it was a pretty all-encompassing effort. He has ways to tailor it to wherever you are, though. I think it would be very hard to get through the program if you can’t at least tolerate quiet videos with someone speaking and occasionally showing diagrams. (There’s nothing loud or flashy, though.)
Thank you for articles on top down and bottom up rewiring approaches! I tried a different program three years ago and it just wasn’t a good fit for me, it was brain retraining only and kind of soured me on that kind of approach. But as proof that people can change their position on things, I’m doing another program now that includes bottom up practices as well to influence the nervous system and I’m seeing quality of life improvements that are giving me real hope. I found my way to this program via a winding road that started with a book, Decode Your Fatigue, mentioned in one of your recovery profiles.
Please keep it up!
Thanks – good luck!
Cort, thank you so much for presenting this way of healing!
I was so opposed to this approach at first. I KNEW I wasn’t just imagining my symptoms, I knew that PEM that I got after activity was real. I was offended whenever I read a suggestion that the answer could be in the brain, especially after I actually tried one brain retraining program and I felt that it made me crash! I tried to be open minded, but for many years after that I just couldn’t.
That is, until life backed me into a corner and I couldn’t tolerate any therapies that my functional medicine practitioner was prescribing. I was desperate, so I tried neuroplasticity again.
It took 5 more brain retraining programs before I finally found my answer! Well, I’m not 100% recovered yet, but it’s a big improvement – from being up for only 4 hours in a day to being up all day, able to go on 1 hour walks, socialize, work part time, go on vacations, have hobbies and do it all with little to no symptoms. Able to live!
But I had to hear about neuroplasticity / nervous system way of healing from many sources and watch many recovery stories to be willing to give it a try and then even more to be willing to try again and again when the programs didn’t work for me. The only reason I could keep putting in the work was because I have heard of so many others who have recovered or improved in this way. That gave me hope that I could find my formula, too.
So thank you for letting people know that this exists. We need to hear it many times and from different sources before it can “stick”.
Thanks, Andreja. Your story reminds me of Dr. Eleanor Stein’s. She quickly got over her horrid MCS using Annie Hopper’s Dynamic Neural Retraining program but it took her like five years of doing before it got to her ME/CFS. She is now fully recovered, exercises regularly etc.
Hopefully it will kick in for me at some point (lol).
I think I heard of her, but this makes me want to look her up and read her story 🙂
5 years of DNRS before seeing improvement? 😯 I don’t think I would have the perseverance for that… and I’ve been known to stick with things for too long 😅
Now I’m more of the thought that if something doesn’t seem to be working, try a different variation or get a coach. Though TBH my first CFS coach led me down the wrong path… but that’s life, some things will work out and others won’t. I like Dan’s approach: if there are no improvements in 6-8 weeks, change something. I also count feeling more regulated as a good change, but at least within 6 months I would also want to see symptom improvement.
I didn’t know that’s what Dr Ellie used but I do know I felt bilked by Annie Hopper and her DNRS programme and the constant need to spend more money. Ellie Stein has her own program she is selling now.
But why BF do you need to spend more money? I tried the program – it didn’t work for me – but I got the book and all the discs plus the opportunity to participate in the forum which I never did but which I assume doesn’t go away.
I believe in the ANS dysfunction. With meditation and breathing technigue you can win some health. But it isn’t a cure. It is can be if you have a burn out.
That’s right there is no single cure, and meditation and breathing isn’t going to fix anyone alone.
However, my hope is that people can see how ANS dysfunctions plays a role in the perpetuation of all the different dysfunctions.
So addressing the dysfunctions AND seeking to normalise ANS function at the same time makes the most sense to me.
My personal opinion – for 25 years – has always been that the parasympathetic nervous system was ”broken”. Something about acetylcholine or the brain stem. Michael vanElzakker has a theory about this part of the ANS. THERE is something disrupting the ANS. That is obvious. Everything can be explained from that. But there is also a cause for this or several different ones. If anyone knows, we will know what ME/CFS/POTS/FM is and you will win the Nobel Prize.
Do you see patiënts getting better after 10, 15 or 20years of illness or more?
Thank you for your thoughtful comment.
I looked into the role of acetylcholine in some detail and I totally get the whole ‘broken’ thinking.
Undoubtedly the mechanisms behind ANS dysfunction are complex and not fully understood and indeed there are inhibitory biological forces that take hold, some of which we understand and others that are probably not well understood.
However, over time I have stopped focussing on such things so much except where the stimulation intolerance is extreme (because those cases seem they could really benefit from some kind of intervention)
The reason is that I see that people can recover, even after many years of illness. Yes, I have seen many people people recover after 1, 2 and 3 decades – I do only remember one lady that recovered after 4. (probably rare more due to the fact that there are drastically less people seeking recover after 4).
Not sure about the Nobel prize – my sense is that perhaps this is not all as mysterious as suggested. If we think of it as a hardware issue, then yes I follow your line of thinking – however, given that people become unwell and recover also, I would suggest that we are really facing more of a software issue – in other words, a maladaptive mechanism.
Eleanor Stein MD had it for decades and completely recovered using these methods. She probably talks about in this video.
https://www.healthrising.org/blog/2021/05/24/whats-up-doc-chronic-fatigue-fibromyalgia-ei-eleanor-stein-md/
For the dissenters here:
I think it’s important not to conflate the discredited and cynical PACE trial nonsense with these brain retraining programs.
The former treated patients abominably (talk about gaslighting – patients told they had “false illness beliefs” and were faking illness for “secondary gain”). Awful and harmful stuff. There’s no place in modern medicine for this kind of abusive behavior.
The latter (Dan Neuffer, Ashok Gupta, Annie Hopper) are completely upfront with patients, do not blame patients in any way, and do not promise cures for everyone. I think there is definite promise in their programs. We know the SNS is over activated in ME – if one can help balance it with these programs, it has to be helpful.
I personally know two intelligent, credible people who are now well after applying these latter programs, with illness duration ranging from 4 years to 35 years.
The most interesting point: why is the AND overactive? Compensation? Low bloodflow and oxygen to the (body) and brain?
Agreed…:) That may be THE question in ME/CFS and FM.
Yes finally … lol -:)
Great question!
We will talk more about this in the later parts of the interview. Indeed the physical dysfunctions trigger the ANS, in particular when there is low blood volume and strong blood sugar variations as well as many other physical dysfunctions!
The ANS controls EVERYTHING.
Dan’s research is legit and has helped me.
I don’t understand why people get stuck in such rigid approaches to treatment when nothing thus far has even worked.
I take a little bit of this and a little bit of that treatment. Try this, move to that. I’m not even stuck solely on the CFS diagnosis as I’ve been diagnosed with: Lyme, ME/CFS, Fibromyalgia, POTS, EDS, Mast Cell issues, Lupus, Sjogren’s… all by experts in their fields (Enlander, Stanford CFS under Montoya, Chheda, Horowitz (Lyme)). Who knows what is really wrong? (What’s really wrong is that I went completely broke.)
One thing that is helping now is seeing a functional medicine naturopath and Gammacore Vagus Nerve stimulation. I feel Vagus Nerve stimulation is in the same field of thought as Dan’s approach to the ANS.
I’ve had TMS (Transcranial Magnetic Stimulation), where I went in one day feeling like death, POTS so bad I could barely hold myself upright and left afterwards going to spend the day at the beach with my family and having dinner out afterwards. Some might say, well maybe you only had depression. Nope, I’ve had a fever for 12 years straight.
Don’t discount the importance of the brain in chronic illness. If you believe Jen Brea’s surgery helped her, then you should believe Dan. The brain controls everything. Specifically, the ANS controls everything.
Thanks Dan. I saw through the pandemic how devoted you were to help your readers even when you got sick. Remember, Joseph Lister was mocked. Doesn’t mean he was wrong. Hold your head up high.
Thanks Cort for sharing Dan’s research.
Angela totally agree with everything you have said. Dan’s programme has given me the tools to help myself. After 7 years being in so much pain from fibro and heavily medicated I am now medication free after being on Dan’s programme for 3 months.
Thanks for your kind comment Angela
Dan is a genuine, decent human being. His hypothesis is undoubtedly correct. I have done over 500 hours of research and there is so much evidence that these range of illnesses are related to an ANS dysfunction. It is the brain perceiving danger. The way out is convincing the brain that you are safe.
The arrogance and ignorance of some people in relation to these illnesses is staggering.
Please listen to Dan. He is genuine.
From what I have seen of Dan, he does seem like a genuine guy, and I think that his ANS Rewire approach has merit. But not necessarily for everyone.
Your comment sounds like you think that his hypothesis is true for all cases of ME/CFS and, after spending 27 years in this community, including moderating support groups, and also reading a lot of research, I do not think that is the case.
I would say that Ron Davis is one of the current leading experts on ME/CFS and his research is far more extensive. He does not, to my knowledge, support an ANS based hypothesis. That does not mean Dan cannot also be correct, I do not think there is necessarily a one size fits all explanation for the condition, and to claim one is premature without some very good evidence. Does Dan even suggest it is the one true cause of ME?
To be frank, your 500 hours of research is just 12.5 hours of full time work. My undergraduate dissertation took more than that, my science PhD (not on ME) was around 6000 hours. A reputable scientist would (and should) be more circumspect.
Hi Andy,
So ME/CFS/Fibro/POTS are complex and heterogeneous, hence the different diagnosis but also there is huge variation within each diagnostic bracket.
The pathogenesis is complex because there are so many dysfunctions and symptoms.
However, it is my view that the primary driving mechanism is ANS dysfunction for this illness and Cort and I go into some discussion around this in the other parts.
That is not to say that other things aren’t going on, because of course there are. Unfortunately some of these, even when triggered by ANS dysfunction, still need support for recovery because they get their own driving dynamic.
A good example of this is IBS, which I believe to be the same condition as ME/CFS/Fibro/MCS/POTS – so driven by ANS dysfunction. However, once IBS takes hold, we start to get all kinds of issues with the gut which is why different physical treatments are helpful and some of them really need intervention. However, ultimately ANS function need to be normalised for IBS to be resolved.
So in summary, yes I think that ANS normalisation is required for every case of this illness, however, I also think that very often numerous other interventions are required not just to return to health, but also to allow ANS normalisation to occur. That’s why you sometimes see people primarily treating the symptoms and make recovery success, because it changes the way the ANS is triggered.
Hope that’s not confusing, the other interview parts should help explains this better.
Thank you for clarifying, Dan. I appreciate that.
I have heard the explanation that other interventions allow the ANS to return to health but am not sure how we would go about scientifically showing that was the case rather than the ANS dysfunction being a proximate rather than original cause.
I also wonder that if Ron Davis’s team demonstrated that their itaconate shunt hypothesis was true and they could cure people by changing that, would that be a problem for the ‘all ME/CFS is ANS dysfunction’ hypothesis? or does the ANS dysfunction hypothesis basically claim all bodily changes, whether immune system, cardiovascular (POTS) etc, stem from that?
As I said before, I think your explanation has merit, and is clearly curative for a subset of people with ME/CFS. I am as yet unconvinced it is the umbrella cause.
Well, I suppose that’s fair enough.
The problem is that the way this ANS dysfunction is expressed is dynamic and complex, not simple and obvious as we see in POTS. My view would always be a multi-sensor portable monitor which would have to be used for longer then just 24 hours (I am thinking at least 7 days).
Whilst you make an absolutely valid point, I think it is somewhat moot because I don’t think that many folk make full recoveries by solely symptom treatment. In fact, I think it’s extremely rare. My experience is that it is always a multi-lateral approach, although not all people are aware of the brain-training strategies they engage in alongside their physical treatments.
I appreciate your skepticism, very healthy and helpful (I am wired the same way). I personally came to the conclusion because it simply makes sense – it explains the numerous dysfunctions, it explains the numerous onset triggers and it even explains the various recovery paths – convincing folk of this was my sole objective in writing CFS Unravelled so many years ago.
❤️
Thank you for your kind comment Stuart. ❤️
If people are uncomfortable with these types of program (myself included… the point about a 30 day refund on a 6 week course is well made), my impression is that they seem quite similar to regular breathing and mindfulness techniques that calm the nervous system, which you can access elsewhere without all the baggage and promises of brain retraining.
For mindfulness I’d recommend the Breathworks charity, who run free weekly mindfulness sessions and relatively cheap online courses, while having a online community that includes many people with chronic illnesses.
Thanks for all the work you put into blog, Cort. Just as a side-note, if you have the time you should check out Dr Kevin Lasko’s neural retraining technique for POTS (he’s been interviewed by the Potscast podcast)… a very different field (chiropractic neurology) but the anecdotal reports from patients remind me of comments here, seemingly miraculous and puzzling improvement
Thanks for sharing.
I think brain-training is less affronting for POTS because it is 100% recognised as being dysautonomia.
Having said that, appropriate intervention is still sorely missing and I don’t think folk solely with POTS get better support then the rest of us.
Thank you for this Cort.
Dan Neuffer probably saved my life. I’ve often commented, a few years back on Health Rising (Tracey Anne) how much his ideas helped me. I was very unwell, increasingly intolerant to more and more food, my blood pressure was sky high, as a consequence of eating certain foods (they set off by sympathetic nervous system) and I was barely sleeping. My energy was clearly becoming progressively depleted. I’m a lone parent. No one believed me. My family didn’t believe me and were in other countries and doctors didn’t believe me.
So, on another late night trawl of the internet I came across Dr Nancy Klimas talking about ME/CFS. I’d never heard of it. I then googled ME/CFS and came across Dan Neuffer and watched his videos.
Dan interviewed Brenten and I was amazed to watch & listen to someone like me, who was intolerant to most food & had to keep changing what he ate. What was the most useful was Brenten highlighted that Dan had previously said to him, “Are you really resting?” As at that time I could barely think or remember anything, I thought to myself that I needed to focus on two things: calming down and getting better sleep. I couldn’t actually understand how this would work but I had no other options.
I’ve improved over the years. Long story but I still have issues. (I also had a heightened sense of smell for a few months amongst all the other weirdness. And I’m intolerant to alcohol and dark chocolate.
This is my experience and I’m not going to be silenced by others who don’t believe me. For that purpose, I did a couple of threads on Twitter, a while back outlining my own viewpoint.
Thank you Cort and thank you Dan.
Thank you for your comment Tracey Anne.
Progress not perfection – keep striving for a fuller recovery and appreciate and enjoy the progress you have made. ❤️
A comment independent of content: I cannot process auditive (video) language information. My ability to take in and process information is impaired due to sensory issues with ME/CFS, auditive information leads to sensory overload within minutes. +
Reading of condensed information I can process better.
So I personally hope this blog will not switch more often to the video format, as the information in a 2,5 hr video or hidden somewhere in Dan Neuffer’s convoluted marketing website is not accessible to me.
It would be great if a blog like this would also come with a gist box or explanation of terms used (like neuroplasticity, somatic feedback).
You did link to the freebies page on Dan Neuffer’s website for a “3-part video series” and PDF, but annoyingly, these are only accessible when registering for updates. To me it is absolutely annoying and deterring marketing behaviour to make information on treatment services contingent on suscribing for updates, which does not build trust in services at all as it feels like forcing people into subscribing for a newsletter instead of letting them make this choice on their own. It is also not at all in line with the requirements of ME/CFS – when I can hardly process information due to ME/CFS cognitive issues, the very last thing I need is another newsletter in the inbox.
No worries. I actually planned to do more videos but my living situation – camping out – means that I don’t have the bandwith to produce and upload video’s! (Dan was able to take care of that.) Health Rising will continue to be primarily text-based. 🙂
Hi JR,
Sorry about the audio issue – totally get and appreciate how challenging that is.
The 3 part video series that summarises the explanation has been freely available on YouTube and my website for many years (no need to opt-in) 😜 Here it is https://cfsunravelled.com/1-the-root-cause-of-mecfs-fibromyalgia-pots/ (it links to the other 2 videos)
The ‘marketing’ opt-in are either for
1.) folk who want to follow my email list on cfsunravelled.com where I update them on recovery interviews and other blogs OR
2.) for the intro lessons for the ANS REWIRE program. The reason why we use this approach is because the 4 free intro lessons are lengthy and dumping them on people in one go is not helpful. Instead, by opting in to the email they get a sense of how the program is delivered – one video a day.
This illness is complex, brevity is not my strong point – the day we find a one-fit-all cure we will have more succinct answers.
Hi Dan, I appreciate your personal reply. Thank you for providing the video link!
For clarification: In this blog, the links in both “A three-part video series, “Learn How Recovery Is Possible“, provides a good introduction to Dan’s ideas.” and “Since then, Dan published “Discover Hope: 7 Steps to Discover Hope and Cope Better” – which is now available as a free download from his website.” lead to the freebies webpage https://cfsunravelled.com/freebies/ . Although on the freebies webpage there is description of both the free PDF and 3-part video series, there is not any working button to download them, it only says at the top of the page: “Subscribe for future updates & download/watch existing resources right away”. So either the freebies page is broken or it does indeed require subscription in order to give access to the videos and PDF.
I have another question for you: Under which link could I access the 4 free intro lessons? And what to expect from them – are they mainly information or do they also contain some exercise to try out to see if one responds to the method?
I am not opposed to trying out new things, if other planned medical interventions such as TheNicotineTest make me well enough to even be able to try.
But as a newcomer to your resources, I’ll be honest and say it does not resonate well with me whenever a service provider makes a kind of universal claim to have found the “root cause of Fibromyalgia, ME/CFS, POTS & MCS” as does the title of your video. From following ME/CFS research in the last 3 years, my best guess is that ME/CFS is a complex systemic cascade dysregulation disorder (like for example in the graph from Renz-Polster’s microglia paper https://pubmed.ncbi.nlm.nih.gov/35614970/#&gid=article-figures&pid=figure-2-uid-1), where some processes may switch into a new state of sick equilibrium, of which ANS dysfunction is one big part, and which depending on the individual may or may not include ongoing perpetuating factors (say, for example, active Covid viral reservoirs in the body). We have also seen in recovery stories on this blog that some people benefited from working with their nervous system, but like Patrick also stated a limited effect on ME/CFS, and some who benefited from it had other strong healing factors like a fully supportive family who relieved them of all duties of cooking or housework.
Therefore I would not expect ANS dysfunction to be “the root cause” of these illnesses, but my best guess would be that in some persons ANS rewiring can provide symptom relief by improving one big area of dysregulation, that in some lucky individuals whose systems are still flexible enough ANS rewiring could – by influencing the system in one building block of dysregulation – provide the necessary impetus for the whole system to readjust itself towards a healthy equilibrium, but that in other individuals this may not be enough to effect change.
I am glad to see from your comment that you acknowledge the complexity of the illness. This is just a feedback that a video title promising “the root cause” of these not yet fully researched illnesses without marking it as a hypothesis, or headlines like “Learn How Recovery Is Possible” on the freebies website are not something I consider trust-building because they sound like universal claims, which would also mean that if I don’t “learn” how to recover with this method it would be my fault.
What does build trust for me is an honest picture of the possibilities and limitations of a method, for example that some cases find it an important part of their recovery, while others report a degree of improvement or do not respond.
This is such a good comment, I felt it really deserved a lengthy response – my apologies about how long it is!
Sorry, those are old links – my bad.
Yes the Discover Hope book is emailed to you, but you can watch the old 3 intro videos here: https://cfsunravelled.com/1-the-root-cause-of-mecfs-fibromyalgia-pots/
The intro lessons can be requested here: https://ansrewire.com/info-request/
So these are separate lists, because they have different purposes (one I send people curated articles/videos about discovering hope and the other is for understanding what the program is about).
OK, I get where you coming from. Obviously everyone already agrees that the root cause of POTS is dysautonomia and both fibromyalgia and ME/CFS are long ago identified as neurological illnesses.
But because these are so complex with so many things going on (thanks for sharing that paper), there seems to be a lack of focus.
I appreciate that my use of language is aggressive and a little grating in referring to the ‘root cause’ – the reason is that the lack of focus is what keeps people spinning their wheels going down rabbit holes and trying to fix a million and one dysfunctions. Seeing that (and have experienced it for 7 years) makes all this frustration more then a little bit personal.
Frankly, after I came to my conclusions, I would have thought it OBVIOUS what the root cause is for any second year medical student! Surely nobody can experience so many varied dysfunctions unless they either
1.) have ANS dysfunction
2.) have hypochondria and are making it up.
It seems quite a few folk seem to suggest we are in the second category which I really don’t take kindly too.
I appreciate you wording here “where some processes may switch into a new state of sick equilibrium”. Because the ANS is what regulates all our systems, including the immune system, I identify this is the root mechanism. However, that is probably a little simplistic because it would appear that the same stress dysregulation process may also be happening on a cellular response, possibly without direct ANS involvement. I am not well versed in this, Cort probably knows a lot more about such things. So I am alluding to the ‘cell danger response’ and even MCAS.
Yes what you say is 100% right and is exactly what I try to teach people. Before we even consider brain-training, we need to create a healing environment. This does not only mean supporting the bodily dysfunctions and getting various treatments where required, but also creating a supportive calm atmosphere and not being constantly triggered by having to do more then we are able. That’s why any ‘brain-training’ isn’t even started until day 14 in the program – we need to set a foundation!
ANS regulation is not something done in isolation in my view, it is not a singular process. It looks different for YOU, then it does for me then it does for everyone else. Learning ‘how recovery is possible’ is just that – it is not learning some magic cure! It’s learning HOW IT IS POSSIBLE.
I don’t think waiting for everyone in the world to agree what drives ME/CFS or Fibromyalgia like they do for POTS is the way to go – it’s really slow despite the insights from scientists identifying these problems. In my experience there appears to be a very significant gap between medical research and medical practice!
When I published CFS Unravelled, major public health websites like various medical colleges involved in diagnosis were very much saying “cause unknown, we know nothing – totally mystery” Now over a decade later, the language has very much changed (espeically for fibromyalgia), but it is still lacking focus.
Yes, the dysfunctions are numerous and how it all works is very complex and yes, much is now and will always be unknown. However, even if we ignore for a moment my 2nd year medical student analysis above (and perhaps we really shouldn’t go past that one!), then there is really an overwhelming evidence of what is driving these illness now.
Just because we don’t have some panacea cure, doesn’t mean we shouldn’t focus on what the root problem is.
Thanks for the feedback or my language use – I find it hard wording things to getting people’s attention and get them focussed whilst being politically correct. You make really valid points, I am not sure how easily I can do better. It’s hard to say something in a headline that perhaps needs to be addressed in a 2000 word essay, just look at this reply. 😮💨
Last comment. It is NOT about some ‘method’.
I of course do NOT have some curative method! (even if some people who recovered suggest this)
It is about a systematic process that tailors your approach within the framework of that focus on resolving ‘the root cause’. That is really complex and challenging and far from a sure thing, which is why people continue to have mixed results with their efforts.
But if people don’t progress, it doesn’t change the validity of the framework or what is going on. It means we have to find a way to better identify and address their dysfunctions and triggers. It’s a personalised process – not popular in a world of sausage factory solutions!
Hope that helps – if you would like to suggest refinements to my website wording once you have looked at the material, feel free to email me, I always appreciate feedback.
Just to add my two cents as someone who previously used brain retraining to recover from POTS, was well for three years and then developed ME/CFS. I have found brain retrianing helpful this time around but not to the point of ever spirally upward with my health….
It is clear from specific symptoms that there is an ANS dysfunction going on in the illness. Things like noise, smell and light sensitivity have to be driven by the brain. Excess sympathetic response / freeze response likewise. We also know from research that there are biological abnormalities in the brains of ME patients. It makes sense that neuroplasticity could possibly correct these abnormalities and that this might have an effect on symptoms. It seems obvious to me that Dan is talking about correcting these kinds of biomedical abnormalities in the brain: he is not doing what a lot of haters like to suggest.
I think it is essential that top minds at various research universities should try to devise their own neuroplasticity programs for ME patients. They understand the neurological abnormalities better than anyone – what would a science-created neuroplasticity program for ME by the folks at Standford look like for example?
The conflation of neuroplasticity approaches with the biopsychosical strand has led to a resistance in academia from considering brain retraining as a possible treatment. This is an understandable kneejerk reaction.
On the other hand, many brain retraining programs unforgiavebly oversimplify ME/CFS and reduce it just to a ‘hypersensitive nervous system’ issue (Dan does not do this). There are countless identified biomedical abnormalities – some of them major like low blood volume, microclotting, autoantibodies attaching to blood vessels and heart – which could be responsible for a lot, if not the majority, of symptoms that a patient feels. You can’t leave out the whole picture and succesful efforts to treat ME/CFS will need to come at it from every angle.
Also many of these secondary dysfunctions are likely to trigger the brain too as it tends to like having a certain amount of blood and oxygen to function!
There is a popular YouTuber who features recovery stories and who repeatedely states that there is nothing wrong in the bodies of ME/CFS patients and all they need to do is retrain their brain. This is unbelievably callous advice.
In sum, I think ME/CFS is driven by many things – many interlinking – both in the brain and everywhere else. I am happy to work on treating things from every angle. For me brain retraining is about changing the physical structure of an injured brain and it is one piece of a multifactorial puzzle. It may not be enough on its own though for a lot of people, depending on what is going on in the rest of their body.
Thank you for adding your perspective. I’d like to add that for persons like me with energy issues and many cognitive issues it’s almost impossible to do regular exercises on top of simply meeting basic needs. And the high level of sympathetic overdrive/tension can make it hard for any meditation to achieve more than feeling slightly less bad – I noticed this when having unexpected stress-reducing side effects to a medication (which were unfortunately only temporary) for 1.5 weeks during which I was suddenly able to deeply meditate, and vagus exercises too had a much stronger effect during that time.
Would you mind possibly adding a few words on what neuroplasticity exercises and brain retraining actually are? So far I don’t have a grip on what we are talking about when using these terms? I only think of the Gupta programme a few years back where – if I remember correctly – it was about constantly and repeatedly telling your body that there is no danger (which might work for some to calm the stress response but to me it seems might also create issues by not acknowledging true emotions – I could not muster the attention for that method anyway …)
I wish there was a ‘like’ option – I completely agree.
I was sick for a total of 4 years with CFS (from a mild exposure). I tried another brain retraining program after 2 years in the illness and could not connect with that approach. I was very disappointed and took me another year to try again.
So at almost 3 years mark I start working towards my recovery with ANS Rewire. It took me 14 months to get myself back to full health, even better then before the illness. It was the hardest thing I ever did. I had to truly understand the responsibility and the influence I have towards my recovery. Before that I was caught for all those years in the blame.
But truly, is not our fault we got sick, but is our responsibility to get everything we can to regain our health. Recovery means a lot of angles to be approach. I had a functional medicine doctor, I did accupuncture, I worked with a therapist. But was shift everything was working closely with ANS Rewire. Is such a multi lateral approach.
Underatanding how CFS got established, what neuroplastisity is and how works, the power of mindfulness, diet, sleep, brain retaining, understanding mental distortions, personality patterns. Was ete opening for me. So so much value for $290 for the program (that is how much cost 3 years ago when I purchased it). But is a self education program. The difference is in how closely we work with the tools. And how we personalize the tools to work for us. And, very important, how we go and seek more help when we need to incoporporate other stuff in our recovery.
Other recovery programs are so much more expensive but they cover the coaching part (some 1 on 1) which for some people may be important or even crucial if is hard for them to work by themself with a program. It does take a lot of commitment, dedication, effort and focus. So we do not need to “romanticize” the brain retraining tools. Is not (a lot of times) a fast or easy road.
Neuroplastisity works by a lot of repetition. I own Dan so so much and I could see how much passion and heart he puts in his work. Thank you again Dan , from the bottom of my heart. Your mission is wonderful and I support you. I wish everybody the best in their health journey. Full recovery is possible. Alexandra
Thank you for your thoughtful and insightful comment Patrick.
The problem is that research must be funded – the kind of research that is funded is usually more commercial – ie. biochemical intervention.
This may sound cynical, but it is simply a fact of how things work in the world. There are scientists with outstanding research and outcomes in this field and they get mainly roadblocks and no support despite the efficacy and validity of their research and treatments.
Thank you for sharing this, Cort. I can say that this type of approach to treating ME/CFS is the only thing thus far to significantly improve my health. I’ve dealt with ME/CFS for 46 years, with the most recent five years being the absolute worst (and I never anticipated my symptoms could possibly getting so much worse). I’ve only been doing the brain retraining part of this approach for a month so far and I’ve gone from being housebound to actually driving again, going for walks, going out to dinner, etc. with no PEM. I still get tired, but without the severe fatigue. I was absolutely the biggest skeptic of this approach, but after doing my research I became a believer in it. It was only then that I took a leap of faith, trying it with 100% devotion. It’s working! I’m so very thankful for those who are fearless in sharing this approach with all of us.
Wow that’s fantastic Ellise – good for you.
I really admire your tenacity to keep looking for answer after so many years – that is amazing. I have no evidence to suggest you can’t make a full recovery – although my experience would suggest that you will struggle to know when you get there after so many years. People usually become “120% recovered” 😉
I touch on this in the other interview parts.
Dear Ellise, would you be able to say a few words about what “brain retraining” is and what it looks like in your case? As I can only take in very limited information, I would be glad to learn about it from someone experienced with it. May I ask which method you followed (was it Dan’s) Thank you very much. I am very glad that you are better!
Dear JR,
Braining Retraining, short answer: breaking the current, programmed loop in the mind body connection that is preventing healing.
Long answer: creating a mentally safe, calm environment in which one can then use positive, healing and forward thinking techniques to create the desired changes and the future life they envision. These methods seem to break the learned programmed loop of response to the symptoms of the illness, within the mind and body, that are keeping a person from healing. It definitely is not what I would call a cure, but at the same time it is healing. One absolutely must believe in it, for it to work. After all, the brain isn’t stupid!
Since I have yet to complete the method I’m using (it is not Dan’s as I did not know of him), I hesitate to share this information. However, what I recommend is going on YouTube, listening to various coaches and selecting the one who is most like you personality-wise, who has experienced a similar CFS journey and with whom you feel you can be most comfortable.
JR, you may not believe it just yet, but I know you’ve got this. You can get so much better. Obviously, you are taking steps forward just by inquiring about it. Congrats on that!
JR, after reading your other comments, all of which are valid, I think it’s important for you to know my level of illness prior to brain retraining. I was determined to take a bath once a week. This meant on bath day, I could do absolutely nothing else. My husband had to help lift me out of the tub, dry me off and put clothes on me. Just walking from the bedroom to the family room couch was all I could do most days. When my husband drove me to appointments, I couldn’t tolerate all of the sensory stimulation. I had a pillow in my lap to try to comfort me and had to ride with my eyes closed. I often could not speak to the doctors, as I didn’t have enough energy and was so short of breath, so I would have notes/questions that I compiled over much time on my phone. I would just give my phone to the doctor and let him read and respond. The next day post-appointment meant staying in bed or at the most, making it to the couch. I know this isn’t anything new or shocking to anyone with CFS. I am only sharing it so that you know where I was then and now.
I might as well put my “two cents in”.
Brain plasticity is a real thing and has helped so many people with horrific symptoms from MS or Parkinson’s and post stroke victims.
So no one should ever deny this method of treatment. Plus don’t forget there is more to his program that may help.
Yes there are a lot of idiotic attempts by fraudsters. Buyer beware.
Neuro plasticity programs have not ever worked for me. Any cns disturbance even if its supposed to be positive actually makes me far worse and I can never carry on.
It does work for some.
Thanks for your comment Kathryn.
The problem is when folk speak of this illness as being SOLELY a brain dysfunction or don’t acknowledge the reality that you cannot magically fix it immediately with some single rudimentary brain-training technique.
That sort of thinking leads to people denying the reality of their real physical illness, pushing themselves excessively and paying for it with the inevitable PEM and other symptom flare-ups. It’s simplistic and silly. (even if it does create more focus in the approach and help some folk).
So even when folk try such things, I would urge them to stay compassionate with themselves and stay true to the knowledge and instinct they have about their illness and be sensible in their approach so they don’t make things worse.
I add to the comments here who are unhappy with you featuring pseudoscience.
Dan has benefitted greatly financially from his programmes, and now so many other untrained people are popping up too, with laughable programmes. I think you may have lost a few followers from this I am sorry to say.
It isn’t just about not recovering, it’s about harm, and there are patients who have been harmed by these programmes that encourage people to push through symptoms. Dan will say this isn’t the case, but it is.
We regularly discuss how harmful Gupta has been to people as rather than helping with any anxiety, it produces anxiety around having to continually do the method.
I also want to point out cohort and mention that Dan has Beth French as “The most inspiring story ever” on his you tube channel.
For those unaware Beth French is a long distance swimmer who has swam the English Channel. She has done this whilst she has ME. Apparently. She herself says she doesn’t have PESE (I have a screen shot of her saying this in a discussion before anyone says she does) so by definition, she doesn’t have ME. So sorry, if Dan is happy to hold someone like Beth French up as a poster girl for recovering from a disease she never had, then who else does does he “treat” with something else, then claim recovery from ME, for the sake of throwing the rest of us under the bus?
It’s his business and I don’t think your blog supported by patients should promote it.
I am grateful for everything else you do. But please leave the pseudoscience out.
I would be careful Ali about how you describe these programs. I haven’t taken ANS Rewire but Dan is very clear in the interview that it is impossible, has his experience has shown him, to push through the illness. He can say better than I, are you sure that he asks patients to push through their symptoms; i.e. “there are patients who have been harmed by these programmes that encourage people to push through symptoms.”
If you read through the comments you’ll find plenty of people who have been helped – and don’t worry – the hard science will be back shortly. Just so you know regarding Health Rising “promoting” this stuff, it is not in any away affiliated with ANS Rewire and receives no funding from it.
I prefer to think of the blog as “informing” actually! 🙂
I am not against you doing blogs like this, but I think Ali is right to point out if the success stories include a person without PESE/PEM under the label of ME.
Also, although I of course cannot tell if this could be the case for Dan or his patients, in plenty of individual recovery stories in particular when there was a relatively short duration of illness it is not fully possible to distinguish the effect of an intervention from the natural course of recovery which is known to happen in a certain percentage of postviral cases.
I also agree with comments that point out this is still a commercial venture, with the commendable money back-guarantee limited to one month after purchase.
When I read the experience reported in another comment: “So at almost 3 years mark I start working towards my recovery with ANS Rewire. It took me 14 months to get myself back to full health, even better then before the illness. It was the hardest thing I ever did. I had to truly understand the responsibility and the influence I have towards my recovery. Before that I was caught for all those years in the blame.
But truly, is not our fault we got sick, but is our responsibility to get everything we can to regain our health. “, this immediately gives me a stomach ache because it sounds so much like the “you’re only as healthy as you want to be” approach.
And when I then read from the same experience report that “Understanding how CFS got established, what neuroplastisity is and how it works, the power of mindfulness, diet, sleep, brain retaining, understanding mental distortions, personality patterns. Was eye opening for me. (..) Neuroplastisity works by a lot of repetition. ” it makes it rather clear to me that with CFS you need to have a rather high level of functionality to even be able to do all that. This is not even going to be possible in a case like mine (moderate bordering on severe, housebound) where my energy is completely consumed by the most basic daily tasks like preparing food or how to achieve a shower every 4 weeks and ability to take in and process information is much limited; where I am glad to manage preparing food at all and following some specific diet is impossible both due to grocery buying and food preparation, and where I am stuck with sensory sensitivies in an appartment with thin walls and TVs running everywhere around me without being able to change something about that now due to energy issues. So I would say that a likely limitation of the ANS rewire program is being feasible for mild-to-moderate cases with relatively good cognitive abilities rather than moderate/servere.
Also, even programs like that can have side effects: For example, due to my having a high degree of detail perception and ongoing self-analysis, a program that requires constant self-observation and -correction can cause stressful overawareness.
While I agree with you doing posts like this, I also think that critical discussion in the comment section of this blog is almost as important as the blog itself whenever you present “unscientific” 🙂 content like anecdotal recovery stories or involving commercial providers.
I also still think that you should make it easier on yourself by putting a standard disclaimer box on top of this kind of article and the summits blogs too, something like “General disclaimer: While Health Rising primarily covers published scientific research and hypotheses, it is also part of HealthRising’s policy to cover ongoing scientific research in the pre-publication stage, anecdotal reports on treatments reported to be effective by patients and overview information which treatment approaches improvements are being attributed to. This may for example include interviews with scientific researchers, personal recovery stories or occasionally information on summits where alternative treatment providers present. Please note that recovery stories are anecdotal and the factors recovery is attributed to by patients are their individual appraisal and opinion. In case commercial ventures are involved such as former patients becoming health service providers, Health Rising is not affiliated with and is not advertising or vouching for quality of such commercial offers. Patients are encouraged to apply their own discretion and discussion in the comments section is always welcome.”
I did not object to Ali’s characterization of that patient.
I would think that neuroplasiticity programs like ANS Rewire might be the easiest for the more functionally impaired.
It’s a nice disclaimer! It’s very long but I would like to use it somewhere. Thanks!
(Health Rising does receive funding from the Summits. Stated at bottom of the blog. )
I did put this at the bottom of the blog
“Health Rising is not affiliated with or receiving funding from ANS Rewire”
Thanks 🙂 All this discussion in, I STILL don’t have an idea what brain retraining and ANS rewiring actually are and what type of exercises they involve… Is there any other blog where this is explained? Unfortunately still can’t process the interview /video series…
Ali, I fully recovered with ANS Rewire. Is nothing about pushing in this program (btw…do not generalize the same conclusion about all programs. I teied a different program a year before I did Dan’s program and did not saw a difderence with that program). If anything, Dan finally help me understand how to slow down and do way less than I did before. This pushing, physically is such a wrong assumtion. I focused on recovery as my nr 1 priority and yes, is a lot of effort and dedication but is not pushing. Not at all. I wish you all the bestnin your health journey.
I have really no more comment to make but Beth French, channel swimmer with ME, Dan’s poster girl.
An objective analysis would look at all the recovery stories instead of plucking out one that has issues. I imagine you’d wouldn’t have many problems with the rest.
Cort, most people that recover do not want to give a public interview. And the one that do (I did…cfr u raveled episode 10) are almost regreting that they did it. We did it, or comment here not for the sake of debating, but to give hope for somemone but it makes it not worth it because of not even be believed. I never made claims outside of my own interpretations or my own ezpeience. That is why statitstic are so bad for for CFS because the ones who recover want to get out of the illness communities because of how they are treated.
Cort, I also want to add to my previous comment just so it clarly and is no confusion, what I said there is my reflection on interacting in any CFS communities after recovery and I have other friends that I met during my journey that fully recovered and would not want to spend any time in any CFS communities because of the respons they get. I admire your work here and dedication for the cause. And also opness to hear other perspectives. Inl wish you all the best. Take care. Alexandra
My 2 cents. I did Dan’s program and he doesn’t ask or recommend anyone to push through symptoms. In fact, here is one of the quotes that I saved from his program:
“Don’t try to force recovery.
Let go of the ego.
Let go of the achiever.
You can’t force sleep. You can only let go and allow it to happen.”
And another one:
“You can’t force the nervous system to act normal – you can coax it by creating a calm and safe experience for it.”
Does this sound like someone who is encouraging people to push through symptoms?
I WAS the biggest skeptic. I have had ME/CFS for 46 years, with the last 5 being worse than I could ever imagine. After doing a lot of research and becoming totally convinced of the merits in braining retraining, I dove into it with 100% conviction. I started reaping the benefits almost immediately. I am so thankful for people like Dan who have been fearless in promoting this approach. And, Cort, thank you for sharing it with all of us. I now absolutely believe I will make a full recovery using these methods. It’s only been one month and I’m already driving, going for walks, dining out with friends. Unbelievable, but believe it!
Is the program translated and/or subtitled to spanish?
My first diagnosis 23 years ago was FM. In meeting other people with FM I found one clear commonality, Trauma (capital T intentional). Were they mentally unsound? NO. But the conclusion I drew from that was there was a commonality and somehow that commonality was manifesting biologically later in life. Perhaps trauma (physical and/or mental) was changing the biology of SOME people. Was it one of the factors? Would saying so make people wonder if every person with FM was experiencing a somatic illness and then conclude it wasn’t worth taking seriously especially because most of the people were female? I’m not an academic, by that point I wasn’t even working. My observations and possible conclusion have no basis in scientific method and I will never claim otherwise so don’t bother jumping on me for it.
In the early 2000’s there was a serious outbreak of SARS in Toronto. I got it and became extremely sick. In succeeding years I had other serious viral illnesses from which I recovered less each time. I am now at a point where I am mostly bedridden, have ME/CFS and have had for at least 20 years but likely much longer.
I have tried many, many, many different therapies none of which helped me. I know I was hopeful, I know how hard I tried and I know I am now too ill to even try another possibility. Does that mean every person with ME should do what I do or did? Of course not.
When we don’t even know which particular variables will cause one person to become very ill and recover and another to become sick and stay that way why are we arguing about something like a mind body connection? Our minds and bodies are inextricably linked but how that manifests in A will not be how it manifests in B or C, not even within the same family.
For far too long we have given psychology and psychiatry too much credence it hasn’t really earned. It is so easy to go with “this study says” without thinking critically. In turn anytime a mind/body connection is implied or spoken of it is deemed an insult. It’s an insult because it implies there’s no “real” illness because it’s All In Your Head and you could stop it if you wanted to, it’s not real, it’s not worthy of treatment, it’s weak mindedness etc etc etc. Those are the prejudices we encounter and deal with every time we see a new dr or disclose our illness.
That this is the interpretation is a huge disservice to every person but also to the actual possibility of being able to work with our own minds and bodies. Consciously breathing can slow your heart, that is fact. Soothing a crying baby by rubbing its back works, that is a mind body connection. A kiss from someone you love raises endorphins, that is a mind body connection. Laughter makes you feel happier if only for a moment and that is a mind body connection.
Trying to find your own way to alter yourself and your body through one of the plasticity programs or supplements or anything else Does Not mean there’s no biological base at work, or, if it doesn’t work for you it’s because you’re an idiot and didn’t try hard enough. These are judgements levied through societies interpretation of psychology. They’re erroneous, just plain mean, without foundation and shouldn’t exist, especially among medical professionals, yet they do. And to understand how inflammatory the interpretation of the words and the implications are you have only to read comments here. Once something is deemed to stem from the mind it is also deemed frivolous. That is why we must be so careful with the language we use……interpretation of mind/body connection is different by country, generation, gender.
When we don’t know if we’re all starting from the same place there’s no way to say for whom any potential solution might help. It’s not possible. There are too many unknown variables. We don’t even know if everybody with ME/CFS or Long Covid has the same disease. Given the cost to find out I doubt even the variables will be identified during my lifetime. But please, take new information with a grain of salt, think critically and if you think there’s validity say so. If you think otherwise that too is valid but please tell us why so we can follow up and draw our own conclusions.
Now I’m going back to bed to try and recover from the effort of writing this.
Thank you for your lengthy thoughtful comment.
It’s a big mozzaball of a topic you tried to address there!
Strongly agree with you on so many points you make.
I hope you feel a little better soon.
I enjoyed the interview and look forward to the future interviews. I have no doubt whatsoever there is ANS dysfunction , however I think one of the main contributors of that dysfunction is due to viral neurotoxins. This is why you get that ‘poisoned’ feeling. Everyone has different symptoms depending on the strain of virus and where it happens to land or attack. I am specifically referring to the herpes family of viruses. Also, from what I have learned adrenaline will feed a virus so anything that will help keep adrenaline flow down will be helpful.
There are many scary possibilities.
However, we have to mindful that in the face of conclusive evidence that we are experiencing such things and/or in the face of a lack of effective intervention for such possibilities, entertaining such thoughts may be very unhelpful.
I always encourage people to speak to themselves and evaluate and frame things the way they would for a young child – we must be gentle and kind with ourselves.
I agree Dan. I am over the moon happy for your recovery and want to express my gratitude to you for sharing your experiences and also to Cort.
Cort I am asking this earnestly — has anyone claiming to have fully healed from brain retraining been able to substantiate their claims with medical proof? If not, they should not be trusted — and in my opinion should not be given any positive promotion for their service.
I think that’s a fair comment.
That’s why when I started doing interviews a decade ago, I went into lots of detail on both what their symptoms were (as well as diagnosis) and what their life is like now.
In particular, I think it’s important to explore not just their symptoms resolving, but that they can actually engage in stressors such as work, exercise and so on. (after all, that’s the real test, right!?)
In recent years, others have started doing such interviews also – so you can check out these recovery stories and judge for yourself if they are genuine and bulldust!
Oregonami, I was able to get my life back with the help of ANS Rewire. I was couchbound and not able to leave the house for months. I am now hiking, swimming,travelling, looking after my family again, currently working on my new career. Honestly, I don’t care if I have medical proof that brain retraining contributed to my healing journey. All that matters to me is that I have my life back. Maybe it was a placebo effect only. Of that’s the case, nothing that any doctor ever offered me made me feel any better. I know quite a few people who got better with brain retraining and am grateful for each one of them to have escaped hell – with or without mecical proof.
I believe that many questions about diagnosis and treatment are about to be answered.
Two new blood tests have been developed, one for ME/CFS and the other for Long Covid. It these stand up to further scrutiny, many treatments will probably fall by the wayside because real patients can be clearly identified.
ME/CFS blood test:
https://www.webmd.com/chronic-fatigue-syndrome/news/20230911/scientists-develop-blood-test-for-chronic-fatigue-syndrome
Long Covid blood test:
https://www.nbcnews.com/health/health-news/long-covid-differences-blood-test-study-finds-rcna116871
What do you mean by ‘real patients can clearly be identified’ Betty?
I apologize for my unfortunate use of the word “real”. Everyone who reads Cort’s blog is ill, but most likely not with the same thing.
The “real” illness I was referring to is the one that started on the West and East coast in the early 1980’s and moved around the country often in clusters.
Rather than defend my position on this, I encourage you to read Osler’s Web by Hillary Johnson which is the most accurate history of this outbreak. It is available on Amazon, but unfortunately not in Audible so it is a challenging read if you have brain fog. Maybe ask someone to read it to you.
Thanks Betty. I’ve had Osler’s Web sitting on my bedside table for about a year! I’ve also bought The Why, which is possibly a good place to start. 🙂
“Real patients”. Here we go again with “I’m more sick than you are” like it’s some weird contest for a race to the bottom. How sad, how simplistic.
The blood tests of which you speak are a welcome addition to a field clearly lacking. I would caution though about concluding they will be definitive. Unfortunately, viruses mutate faster than we can keep up, we are their pawns. Therefore a blood test now won’t be an absolute like it would be for pregnancy or mononucleosis.
When we don’t know what we don’t know about the genesis of the illness or if it’s even the same illness we can draw conclusions too quickly. This is why ME having been documented under a variety of names can be found as far back as WW1. Mentioned, noted and then forgotten. Battle fatigue. Yuppie Flu. Hysterical illness if you’re female. Glandular fever.
I worry that very sick people will be dismissed and sent away because they don’t fit neatly into the parameters. It’s like the neurologist who first mispronounced my last name ( it’s a famous one in neurology and especially in my city but jealousy and small minds are rampant in medicine), looked at my evoked potential results which were decidedly askew and without touching me or speaking to me announced “there’s SOMETHING wrong with you young lady but it’s NOT neurological.” It took me 2 years to find the courage to try something else. (That time I tried bioidentical hormones having been assured by the physiatrist they’d fix me. *sigh*)
Hi Cort,
thanks for including these interviews with Dan. I haven’t done his program but was inspired by a person who recovered on his program to look deeper into the nervous system aspect of ME/CFS. That’s how I found out about Polyvagal theory and then Stanley Rosenberg’s vagus nerve exercises.
I’ve been recovering using Dr.Paul Eck’s work called Nutritional Balancing based on hair tissue mineral analysis. My progress had been consistent but slow. Adding the vagus nerve exercises immediately accelerated my progress by being able to calm down my nervous system to the point I could feel my jaw muscles relax within only 10 – 15 minutes. It also cut my recovery time from PEM in half.
Clearly, Dan’s program has helped some (many?) people to fully recovery, many to improve, and some with little or no progress. That’s a helluva lot better than what mainstream medicine has to offer – which is basically nothing or often times people get worse.
Cort – the question I have for you is why researchers don’t follow up on Dan’s work & his customers to advance their own work? Instead they blindly put out theory after theory that they spend millions of dollars researching with little or no results. Isn’t a researcher’s job to investigate and determine the underlying biologic pathways that are changing? It would seem that researching patients that are improving would shed light on these pathways and open up treatment options for more people.
I have the same question for the program that I’m on – in my case I have years of lab results documenting my improvement as well as tremendous insight into the metabolic underpinnings of ME/CFS. And yet, I’ve never had one single researcher follow up on my posts or respond to my emails.
Dr. Paul Eck’s work has been around since the mid 80’s and has survived the test of time. His work is based on Dr. George Watson’s work from the 1960’s which proved that metabolism is malleable – certain vitamins and minerals combined with specific types of foods will speed up metabolism and others will slow it down. Once I learned this, it saved me thousands of dollars on supplements that didn’t work and allowed me to start recovering by focusing on those that did.
It seems that researchers are so entrenched in the ‘incurable disease’ position that anyone who recovers is just an outlier with nothing to offer. If they based their work on what is already helping patients we would all be much further ahead.
What am I missing here?
Cort, I have long admired your writing abilities and have followed health rising for years. I welcome all information presented by health rising. I have had dysautonomia since I was a small child, just like my mother, siblings and my 3 sons. In my case, I have recently found mutations in my immune complement system which can be connected to autoimmune disorders. Lab testing has confirmed partial complement deficiency. I have been previously diagnosed with POTS, fibromyalgia, ME/CFS & recently small fiber neuropathy. I will meet with a rheumatologist in February as I have symptoms of Sjogren’s & some for lupus. My thoughts are that even though I think there is a primary “physiological” reason for these illnesses & my dysautonomia, our autonomic nervous systems are affected by sights, sounds, thoughts, smells, pain, colors, memories, trauma etc. It only makes sense that anything a person can do to limit harmful effects to our ANS will help our conditions. I have been working on getting my mind as healthy as I can. I’m not well, but I know I need to do what I can to help my ANS. Any tips on doing so are greatly appreciated. In my mind it is an essential part of the overall treatment plan.
Exactly, that’s how I view it as well! ANS controls so much of how our body works that it only makes sense that we help it work as well as it can. I recently learned of neuroimmune modulation via vagus nerve stimulation which can downregulate some autoimmune responses (they use electrical pulses for that I think). Can we do something similar with our minds and vagus nerve exercises? Who knows. In either case, ANS has a big potential for healing seemingly unrelated illnesses. I’m wishing you all the best on your healing journey 🤗
I think meditation for people with me/cfs should be considered in the same vein as meditation for people with cancer – fine if you need some relaxation, but potentially dangerous if presented as a treatment. It isn’t going to fix real biological problems.
Well at face value your comment makes complete sense of course. Look, I appreciate some folk have all kinds of amazing experiences with all kinds of illness, but how reproducible and credible are they???? Sorry if I sound like a naysayer, I am just saying we have to be practical – are you really going to expect to cure yourself from cancer by starting meditating?
The problem is that in science we tend to measure interventions in isolation (how else can you otherwise reliably measure them, right!?).
The issue is that the effectiveness of treatments/strategies for this group of illnesses in isolation is actually not that great – not just for meditation, but for the vast majority of treatments and strategies.
And I have never come across someone who recovered by solely meditating. Whilst mindfulness practice is included in the book and program, it is NOT as a solution, but rather as a foundation for doing the neuroplasticity work.
Having said all that, let us also recognise that meditation can have a profound physical impact on the body. Maybe it can’t cure CFS/Fibro or cancer, but we can see signficant physical changes in the brain measured with MRIs after even a short period of dedicated practice. Such changes don’t translate to any cures on their own as far as I know, but we know that not only are there physical changes, but also functional changes.
In summary, don’t overestimate singular strategies, don’t underestimate them.
I was a participant of Dans program when it first originated
I am not 100 % recovered but went from bedbound, and housebound to ‘living again’
He gave me the tools to explore every Avenue of ‘my’ illness. It’s hard work but worth all of it. He also was my ‘coach’
His sincerity was overwhelming needed.
I am able to walk for 30 minutes most mornings, pick up my grandkids from school, travel some again
I still experience symptoms but developed tools to help me better control of my illness.
There is no cure as he plainly states.
But every 10% from each avenue can add up to a better quality of life.
His approach is 360
It’s worth trying for any percent toward recovery.
He believes in recovery
And I believe while this illness is not all in someone’s ‘head’ our brains have the power to change everything.
Thanks Dan for helping me to ‘live again’
Thank you for your kind comment Denise.
Great to see you making the most of your time with the grandkids 😉❤️
Thanks for sharing this Cort. I know it’s controversial to some folks, but some people find it really helpful and I’m glad those people are finding some form of relief. Biomedical aspect (bottom-up) is no doubt the actual underlying cause, but external input into the autonomic nervous system (top- down) should never be underestimated and I think moves the needle
This is the lightening Process with another name. I am a recovered person of ME/CFS and had it for 16 years from the UK. Whether it works or not I can’t say as I haven;t ever tried it or the LP but I doubt it is a cureall for ME/CFS. I hope it helps the people who try it though.
My gosh, Martin -you’ve never tried the Lightning Process or ANS Rewire – yet you know enough to say this is the Lightning Process by another name (???)).
Cort here is what the lightning process does which is very similar to ANS rewire.
https://lightningprocess.com/what-is-the-lightning-process/
Thanks
https://lightningprocess.com/what-is-the-lightning-process/
“The Lightning Process involves gentle movement, meditation-like techniques and mental exercises. With practise you can use them to change the way your nervous system works, switching on pathways which promote health and switching off ones which aren’t so good for you.”
I’m sure there are similarities. There are similarities to all these programs – ANS, DNRS, Gupta – they are all heavily invested in neuroplasticity. There are also some video lessons in ANS that provide support with cellular metabolism; hormonal and neurotransmitters, and detoxification as well as supplements and diet.
More importantly in contrast to the 1 weekend and get all better from ME/CFS approach that the Lightning Process takes (hence the name) the ANS Rewire program lasts for a minimum of 6 weeks and you can subscribe to it for a year. As you’ll see in the interview Dan views the recovery process as a surprisingly slow one – and in some ways – he believes it has to be so.
While LP may use some similar techniques it’s the get better in 1 weekend approach that has really set people off. Of all these programs it arouses the most upset – I don’t think it’s really fair to Rewire to conflate it with such a controversial program.
This was the only ANS program that helped me. I did other things, as well, but it was super useful. Thanks for the interview.
With all due respect, I read a lot about neuroplasticity. Dan and Cort talk about this. In my opinion, a vague and broad concept in an objective sense. How do we measure this? Which neurological pathways or connections are changed or ‘broken’ in ME/CFS patients. And which pathways (neurons) have been restored after Dan’s or LP’s therapie? Which MRI results can confirm this? Very vague in my opinion. An example is: if we have MS patients do an MRI scan with white matter abnormalities and then apply Dan’s therapy or LP, I am sure that not a single white matter abnormality has disappeared.
While the results of Dan practice have not been measured MRI studies do show that mindfulness and meditation practices can have a dramatic effect on brain functioning. For instance,
We found that regions comprising three key functional brain networks i.e., Default-mode, Salience, and Executive Control, were consistently implicated in focused attention meditation. Furthermore, meditation expertise, mindfulness levels and attentional skills were found to significantly influence the magnitude, but not regional extent, of activation and functional connectivity in these networks
https://pubmed.ncbi.nlm.nih.gov/36067965/
Specifically, mindfulness-mediated functional connectivity changes include (1) increased connectivity between posterior cingulate cortex (DMN) and dorsolateral prefrontal cortex (FPN), which may relate to attention control; (2) decreased connectivity between cuneus and SN, which may relate to self-awareness; (3) increased connectivity between rostral anterior cingulate cortex region and dorsomedial prefrontal cortex (DMN) and decreased connectivity between rostral anterior cingulate cortex region and amygdala region, both of which may relate to emotion regulation; and lastly, (4) increased connectivity between dorsal anterior cingulate cortex (SN) and anterior insula (SN) which may relate to pain relief. While further study of mindfulness is needed, neural signatures of mindfulness are emerging.
https://pubmed.ncbi.nlm.nih.gov/35202647/
Here, using a systematic review approach, we identified 25 peer-reviewed magnetic resonance imaging (MRI) studies demonstrating grey matter changes related to mindfulness meditation…In conclusion, our analyses show that mindfulness meditation practice does induce grey matter changes
https://pubmed.ncbi.nlm.nih.gov/33624219/
CBT/GET lead to significant increase of grey matter and changes in nettwork.
Maybe even a better methode than mindfulness?
We have quantified cerebral structural changes in 22 CFS patients that underwent CBT and 22 healthy control participants. At baseline, CFS patients had significantly lower grey matter volume than healthy control participants. CBT intervention led to a significant improvement in health status, physical activity and cognitive performance. Crucially, CFS patients showed a significant increase in grey matter volume,
https://pubmed.ncbi.nlm.nih.gov/18587150/
But my guestion was what about the therapie from Dan? Make it more objective.
Dan, when you say you are recovered, does this mean you needn’t follow any special diet, take no nutraceuticals or medications, can work, exercise and travel without being constrained by “it”?
Hi Linda,
Yes that’s right.
I would say however that I don’t tend to fast or drink excessive coffee as I have found I don’t do well with that – perhaps a person without a similar health history wouldn’t worry about such things, but having spent 7 years ill I am a little gun shy about feeling subpar!
Cort and I discuss this in the later parts. I know some people label themselves as ‘recovered’ but are very restricted in diet, activity and have lots of medical support. Not to say there isn’t value in that, but I would call that good symptom management. To be fair, such people undoubtedly do have a level of recovery – let’s call it a partial recovery.
I came back here to watch the video and was just floored at some of the nasty comments towards Dan and ANS Rewire, and Cort by extension.
You know, most of the popular ME/CFS/fibro + comorbidity treatments didn’t work for me. Some of them actually made me worse.
Cromolyn, LDN, gabapentin, amoxicillin, palmitoyethanolomide, DAO, HistaminX, HistaBlock, H1+H2 blockers, Loratadine, dextromethorphan, on and on…
Let’s definitely decry all these things, as they didn’t work at all for ME personally.
And on a serious note, let’s remember a drug BARELY has to be effective for SOME people to be considered a scientific success. Rifaximin cures fewer than 40% of SIBO infections, making it slightly higher than placebo—therefore, it’s an FDA approved first line treatment. I’ve had drugs with efficacy rates as low as 12%.
In working with Dan, I found him genuine and sincere. His little $300 charge is hardly making him wealthy. I cannot say that for Salix, which manufacturers rifaximin, often costing patients nearly $3k per BOTTLE.
Goodness, people.
Thanks for sharing your thoughts Kira
Goodness! Maybe one day I’ll have the time and energy to read all the comments! A friend recently tweeted (X’ed?) that she would no longer read your blog because of this article, next time I see her I’ll suggest she read the comments, they certainly cover a lot of perspectives.
There is a big part of me that has learned from experience (I am 75 yo) that one’s mind can accomplish a lot if one puts one’s mind to it, lol. I also have an M.Sc. in Biology, so I respect science done properly, but I know it has its limitations. And not all ‘scientific’ research is flawless. So far, there is no one treatment or cure that works for everyone, and some of us have improved thanks to trying one thing or another, not necessarily the same one thing.
Cort, I am glad you publish articles like this, if only to spur discussion and present alternative views.
There used to be a time where everyone recognised the value of different viewpoints – one might even say it is an integral part of the scientific process.
My biggest learnings in life have come from considering the alternative opinion – that’s why I do my best to keep listening.
One thing I have noticed over the years is that folk who arc up and strongly object to me, have not actually listened to anything I have said.
What is so objectionable – that the illness is real? That there is no cure? That is a neurological illness? That there are million and one treatments and none cure us? Surely we all recognise that these are facts recognised by the WHO and the wider medical community for many years now.
Surely it can’t be the simple fact that recovery is possible, even though there is no panacea cure! Or is it the suggestion that perhaps the illness is not the enigma that it is often made out to be?
In my experience people arc up because they say that the illness is real, it’s not mental and not imagined, it’s not all in our heads, you can mind over matter and simply wish it away. Well, that is old news – I have never suggested any such things because that would be ludicrous.
I was diagnosed with CFS in 2000, and I got better in under a year. I lived a reasonably healthy and active life until early 2020, when I believe I had Covid. Been sick ever since with either long Covid or ME/CFS. I thought that I had simply run out of luck and was too old to recover this time. Recently I have come to realize that that is just a thought, not a fact. Coincidentally, I was an active mindfulness meditator in 2000, had been since a couple of years prior. But I gave it up a few years after my initial recovery, thinking there was no real benefit and I couldn’t spare the time. LOL.
Tell her she’s going to miss a lot of good science!
I know, eh?
Hello. I have now been through the Gupta, Dan ANS rewiring program, as well as another local program which is probably closer to the Lightening Process. Realize that I am an optimist (or an idiot? by definition). Perhaps this has to do with personality types, who do the programs help best?
I myself am a very unstructured person who quickly forgets the “reference book”, but I pick up some things along the way anyway. And believe it or not, do my best to succeed ie “hard work” every time (program) with a very slow progression over all these years.
My hope is that new knowledge is arriving all the time, if not at record speed and not with the greatest financial resources and support.
Incidentally, I perceive Dan Neuffer as a knowledgeable, honest and extremely friendly person. Hip hooray for those of you who have become good, better, – and the rest of us must do our best. I am not scared away by Dan (-: here on the website, I continue with my tiny contribution a month to Health Rising which I perceive as the best information channel according to ME.
Better to still be open, curious, and to gather all good forces.
“Home probation” since 2011, Stina
I’m sorry to hear that you have worked hard and haven’t seen the results you hoped for. I’m glad you keep trying. That is all that we can do. Try this thing. Try that thing.
Incidentally, if someone asked me 6 years ago (after I’ve done my first program) what I thought about brain retraining programs, I would tell them that they’re selling false hope and that it made me worse. Much worse, in fact. And yet, a few years later I couldn’t tolerate any supplements or sauna or infra red light and so out of desperation I tried brain retraining again. And somehow, little by little, it worked… until I found a combination that worked big time. Never give up 💪
Andreja-
I like your post here and in a CFS program we are both in. They give me hope!
I have issues with some binders (Pectasol, metal cleanse, Welchol) and slowly over years have become intolerant of sauna, bath heat, and infrared light. Severe exhaustion for a few days as well as leg tingling and burning.
Could you please tell me – were those your symptoms as well and if so did brain retraining take care of any/all of these?
Thank you,
Jamie
Hi Jamie, I’m sorry to hear that your sensitivities have been getting worse through the years.
Yes, I would get increased fatigue with any kind of heat and also from regular showers (not hot) and from cold exposure. Even 5 minutes of sauna or infra red light (which doesn’t even emit much heat, since it’s mostly light energy) was enough to feel more fatigue than normal for at least a day. Longer exposures could mean several weeks of increased fatigue.
I don’t know at which point to call fatigue “exhaustion”. During recent years I was usually sleeping or napping for 20 hours per day, but I was able to walk around the apartment and to take my dog outside briefly when I was awake.
Showers and heat up to 30 degrees C or so are not causing fatigue anymore for me. I don’t think I’m ready for sauna yet. I plan on incorporating IR light into my routine during the winter, which means that if it will cause any increase in fatigue I plan to retrain that until it’s fine 🙂 And after that I plan to retrain cold showers. I’m excited for this winter 🙂
I had tons of tingling in my legs! Not necessarily related to heat exposure. I had it most of the time. It dissipated as I regulated my NS more. If I feel a bit of tingling these days it’s a sign that I’ve spent too much time in sympathetic state and haven’t regulated well.
I hope this helps 🙂
Yikes, this is an intense comment section.
I’ve done Gupta. It didn’t heal me, but I had trouble committing to it. I also took many tools away from it that have helped shift my mindset. I am re-reading the course transcript now. Why? Because I have been watching a ton of recovery videos on YouTube and I’ve noticed three consistent themes in those who have recovered: 1) recovery mindset (hugely important- you have to believe and be an active participant in your own recovery), 2) pacing, and 3) brain retraining.
If you imagine yourself sucking on a lemon, you will actually start salivating (a dreadful thought for me, since I hate lemons!). That is how powerful the mind is. It’s about putting yourself in a healing state. Watch the documentary Heal on Amazon Prime if you want to see more about this.
Cort, thank you for your steadfastness in featuring all kinds of routes to recovery here.
Hi Amy,
Nice one on recognising the themes.
Pacing is very important, although it can be a bit of a double-edged sword, but when combined with brain-training it’s really powerful. I would say people pushing themselves too much is perhaps the greatest problem when seeking recovery.
Appreciate your positive focus, hope you enjoy the next parts of the interview!
Cort have you been tested for Lupus? I couldnt help but notice in the interview that you appear (to me) to have the classic bbutterfly rash across your upper face and cheeks. It is faint, but clearly noticeable.
Hi Pat – no I have not but that red, shiny rash always gets worse when I get worse. I’ve had it for decades. I haven’t seen the rest of the video, but I wonder what it will look like by the end of the interview. Thanks for the question. I should get it checked out.
I did this program. Unfortunately it didn’t help me at all so i wouldn’t recommend based on my experience.
I don’t go in for the whole brain retraining ANS theory thing but this man is telling the truth in my opinion. I can relate to his onset story, for me it was a few months of general anxiety disorder / paranoia with occasional panic attacks that started suddenly which preceeded my CFS onset, I had gotten over it by that point and it wasn’t my first psychological illness but I was still in an odd ‘head space’ and as a result I was cycling obsessively to distract myself from that. 5 years into my CFS I developed what I now believe is H2S SIBO and it made me very ill, but I can actually see how it could be confused for CFS, i’ve now partially recovered from the SIBO but obviously I still have the CFS underlying it all to deal with if I do get back on track.
I’m looking forward to the rest of these interviews. I am one of those who have benefitted immensely from Dan’s ANS Rewire Program. I had symptoms since 1990, and became debilitated in 2002, and mostly bedbound by 2009. After trying so many things, on my second ME/CFS specialist, I read his book and knew this might be the key when he suggested multiple or long term trauma and the ANS dysfunction could trigger ME symptoms, FM and POTS. I went from about 5% to 70% functioning level in about 18 months… able to look at bright light, converse with my family, sit at the table, walk, drive, think! in short, engage in life and the world again. All who know me couldn’t believe in the transformation.
With new stressors and traumatic issues, I continue to rewire thoughts, and symptoms, and since COVID have slowed down a bit. But I am convinced that Dan’s theory was correct for me.
Thank you, Cort, for doing the interviews.
Congratulations Denise on your improvement and your persistence with the program. Thanks for sharing your results. Part II of the interview is coming up.
I don’t understand the appeal of profiteering off desperate people who have the same illness you recovered from and therefore know how debilitating it is. I’ve done these programmes out of desperation and have had to borrow money from family to do so. You can call me cynical but if I recover I would want to spread my recovery as far and wide as a can. Not to make money from sick people who can’t work.
I’m sorry it didn’t work for you Sophie but anyone who is not independently wealthy who puts a great deal of time, effort and resources into something must find a way to compensated. Dan, after all, has a family to take care of. Besides $350 US for a 1 year program – which allows you to get your money back after 6 weeks if you’re not satisfied with it – seems like a bargain to me compared to the tens of thousands of dollars Ive spent fruitlessly on ME/CFS.
Maybe it seems like a bargain to you but probably not to the people it didn’t work for and for some people it isn’t achievable to pay at all. It’s the £350s that add up to the £10,000s in the hope of finding treatment. There are so many CFS ‘recovery’ programmes now but with little to no scientific validation. I’m not saying it isn’t wonderful to share all and any information you have on recovery.
I’m saying personally I find it hard to understanding charging for information that could be shared freely. After all once recovered all these people are capable of working and earning a wage independently.
Thank you Cort for doing such an incredible interview with Dan. He is so genuine, relatable, and open about his hellish struggle with CFS and Fibro. Dan has been in the same trenches that all of us with ME/CFS have been. Eight years ago I started watching his interviews with people who had recovered from CFS. His book and hypothesis of the ANS dysregulation was the first that actually made sense to me both scientifically and personally, and also gave me hope that recovery is possible.
I’m trying to catch up on recent Health Rising articles, so a disclaimer – I haven’t watched the video yet, but definitely will, as the whole idea of ANS disfunction really interests me – but I have skim-read lots of the comments.
I tried the ANS Rewire programme a few years back and eventually gave up. Sadly it didn’t help me, which I find hugely frustrating as I can see a lot of scientific sense in the theory behind it. Having another bash at it, or something similar, is a regular consideration. But there are problems…
So my question is…
How can I follow a programme such as this when I live alone, spend all my energy on basic tasks in order to survive yet increasingly struggle to maintain a property I am too ill to downsize from, regularly push myself and overdo it then get PEM and feel absolutely dreadful, but if I don’t I would never go outside or see anyone and my mental health would be unbearable, and most of all, I have zero family support and only my ME friends ‘get it’, but understandably we rarely meet as we’re all ill and of course they can’t offer practical support. When I have tried various interventions related to brain training, I find it exhausting, as it means fitting in more tasks, and then I get stressed at the sheer effort of it. If I had a full time housekeeper/carer/partner I might stand a chance.
Suggestions welcome. Thank you!