This is the 3rd in a series of interviews with Dan Neuffer. The creator of the ANS Rewired program and the author of CFS Unravelled, Dan has been exploring the world of recovery from chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) and related diseases for over ten years.
Highlights from the interview (plus some extra tidbits and links) are below. I encourage everyone, though, to watch the interview to get a sense of who Dan is and what he is about.
- I ask about people who do treatments and don’t recover 0:00:17
- I ask what % of the population might be able to recover?
- What about the ‘too sick’ people? 0:16:40
- We discuss how our mental state affects our recovery 0:23:09
- Dan talks about the term ‘mind-body’ vs known science on pain brain-training 0:26:24
- I ask how severely ill a person Dan has seen recover 0:33:38
- Link to download first 10 chapters of Dan Neuffer’s book CFS Unravelled for free
- Link to Dan Neuffer’s YouTube Channel:
/ @cfsunravelled1
Overview
I asked Dan, “What about people who have tried seemingly everything but who are not moving forward?”
Dan says that includes just about everyone! We all try all these things but don’t seem to make any progress. For one, we think we have tried it all but, of course, we haven’t, but more importantly, probably the most important mistake is people tend to hop from one thing to the next – they don’t operate strategically. They try this and then they try that. They should be trying this then they add that then they add something else – that’s the key.
It’s one thing to do something and it’s another thing to do something effectively. He has many doctors who’ve recovered in his program and he’s asked them about patient compliance. They’ve reported that patient compliance is far from 100% even for drugs that do work let alone for things like lifestyle changes such as bedtime routines, meditation, and diet that take more effort.
I noted how poor I am now at patient compliance. I’m doing exactly what Dan spoke about. I try something for a while, and when it doesn’t work, I jump to something else. Even when I try something, I don’t do it well. I probably don’t stay on things long enough or I’m not consistent. My guess is that too many years of failure have dulled my commitment and follow-through
So how do we persist with things? Dan proposed that the positives have to outweigh the negatives. What really works, though, is experiencing that something is working – there is no more powerful incentive than that.
Regarding mind/body work, the path can be complex and convoluted. Dan said he’s frequently seen someone try his program or another, have trouble with it and go away and try something else, or maybe read some books and then they try it again – and then they “get it” and it works. That made me think of Dr. Eleanor Stein’s story: it took her years of practice until it REALLY kicked in, but when it did, she recovered fully.
The way you approach your recovery is important. Going into it with an “I have to get well now” approach is probably the least effective approach. It’s probably going to cause more stress – not exactly the thing you want in a disease with broken stress responses. One of the odd things, then, that can inhibit mind/body work is trying too hard. A calm, happy, healing environment – not an easy thing in such a difficult illness – is best.
Dan noted that for most people, it’s one or the other – a mind/body or physical approach, but he’s a proponent of both. Taking something to reduce inflammation and trying to retrain your brain at the same time can seem like a conflict, though, to some people and that conflict can loom so large that they might do better focusing on just one. For his money, though, both done together is preferable.
He reported that he’s seen many people who’ve focused purely on mind/body approaches come to his program – add in the physical approach, along with perhaps a more flexible mind/body approach – and subsequently recover.
I asked Dan what percentage of people with these illnesses could get well if they just did the right treatments in the right way and how many people are just too ill to recover given the treatments present.
Dan said he was coming from his experience only and that his attitude towards recovery had changed over time. After noting that at one time he felt he was too ill to recover, Dan reported that when he started ANS Rewire, he thought that people who have been ill for too long or people who are too ill were not going to be able to recover.
Noting that neurons that wire together fire together – a central tenet of neuroplasticity – and that neurons that have wired together longer should logically fire together stronger (i.e. be more difficult to rewire), it made sense to believe that people who’d been ill a long time probably weren’t going to recover or get significantly better. Likewise, he felt that people with more physical dysfunctions probably weren’t going to recover or significantly improve.
His experience over time, though, has annihilated that way of thinking. He’s seen people recover who he thought had no chance of recovery and recalled someone who was homeless and at 10-15% functional level who made a 70-80% recovery.
He’s met many people who were in bed and couldn’t tolerate listening to an audio tape who subsequently either recovered fully or recovered to 50 or 70% of normal. He noted that most of the time we’re in a bedbound state, it’s not accurate to say that we’re doing nothing. Mentally and emotionally, our minds can still be in a very active and agitated state; in other words, there’s still a lot going on.
(In her book, “The Last Best Cure”, Donna Jackson Nakazawa wrote about the pro-inflammatory immune factors that get released during times of mental agitation and how reducing that agitation helped her dramatically improve her autoimmune disease.)
People can, of course, be so ill that nothing is going on mentally. At one point, Dan was so ill that he said he wasn’t even aware of what was going on.
I recalled Dan Moricoli who said he thought he was in a coma-like state for months at one point. Probably because of the extensive mind/body work he’d done in the past, Dan Moricoli was somehow able to meet a devastating case of ME/CFS without agitation. He was able to accept his illness from the beginning and I wondered if that helped his subsequent recovery. (Using extreme pacing, yoga, and breathwork, Dan Moricoli ended up fully recovering.)
A kind of mental pacing, then, can assist recovery. Dan noted that while mind/body stuff sounds “fluffy”, extensive research on chronic pain indicates it can be effective. Drugs, for instance, aren’t enough to really blunt the pain burn victims experience when they have to undergo the horrific treatments they need to get better. Now they’re being asked to play games on virtual reality headsets when they undergo their treatments.
For a mind-blowing example of how incredibly effective neuroplasticity can be for at least some people, check out Dr. Moskowitz’s story.
Dan noted that when we’re talking about retraining the brain we’re asking people to do weird, stupid, ridiculous things like experiencing pain without it hurting. Context, Dan said, is everything. If you don’t understand the science and understand how it works, it will seem like baloney. If you do understand it, then it’s easier to move forward on what seems like an impossible task. (Most pain neuroplasticity approaches start by explaining the science behind neuroplasticity.)
How ill have people been that Dan has seen be able to recover or substantially improve? Dan said he’s seen many bedbound people recover, or if not recover, get back to 50 to 70% of normal health. It’s not the severity of illness that shocks him – he’s seen too many bedbound people get dramatically better – it’s the people with so few resources who’ve recovered that amazes him now. It blows him away what people are capable of…
The Dan Neuffer Interview Series on Recovery From ME/FS and Fibromyalgia
- 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!”
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Well, of course staying calm and mindful is always a good life practice. But if you get ME and lose your employment, any savings, your housing, your disbelieving partner and also your family, and run into all the doctors who still believe it is not a real illness, who are you kidding? You are going to sit in the snow in the street and breathe deeply?
That’s pretty brutal! But not at all unusual. I haven’t taken Dan’s class but I feel pretty certain that there’s a lot more to Dan’s approach than breathing deeply or sitting in the snow and I don’t imagine that you meant that. The mind/body world – if you chose to go that route – is truly immense. Many different practices are available.
Finding a way to deal with all that as best as possible with all that would probably be helpful! Even taking a little edge off would be provide some relief. Would it lead to a recovery or take away the losses? Probably not with recovery and the losses would remain but some relief would occur.
Finding ways to face losses like that is a very good question for a future blog.
Not for the first time and not for the last one – one way to get across the immense losses these diseases cause is to take some time and tell your story. At least get your story out there! People should know! They don’t know. Either they don’t know that ME/CFS or fibromyalgia or long COVID are or they think they’re about a little fatigue, or pain – whatever little box they can put them in. In essence whether they mean to or not, they downplay them.
They have no idea the physical, mental, emotional trials these diseases put us through. Few people even with chronic illnesses tested like these diseases test people – and people should know that.
The Lives Interrupted project is an excellent way to do that.
Here’s a story about my story that is “out there.”
My memoir about adopting an injured pigeon is making the rounds among the top tier NY literary agents. My story captures my pigeon’s return to health as my own health declines. (It has been called–among other things–an ME/CFS advocacy story.)
I just got feedback from one of the agents–formerly a highly acclaimed writer and university teacher–who had comments on the writing and story structure of what he called a very engaging manuscript. But he also rather oddly added a comment that in the book it is a mistake to use the term “chronic fatigue syndrome” and instead I should used the term “myalgic encephalomyelitis.”
He said that the anecdotes I tell throughout the book about the disbelief I have encountered, combined with my descriptions of the historical neglect of CFS, convinced him that chronic fatigue syndrome was actually NOT a real or serious illness.
This prompted him to google “chronic fatigue syndrome,” and for the first time in his near-seven decades on this planet he learned that CFS is an illness of extreme brutality, suffered by an astonishingly large number of people (just as I had written).
So, he reads a book he likes in a style he likes by a narrator he likes, and a takeaway of his is to toss out the entire explanation of the illness.
I thought I knew what we were up against…but it is even worse than I thought.
Should more stories be out there? Absolutely. But perhaps we need figure out how to tell them in a counterintuitive way, and in a context that doesn’t perpetuate disbelief. Otherwise, we may be doing more harm than good.
Glad your story is getting out there. I hope it gets published.
I agree that some stories can evoke disbelief – some are simply too shattering and all encompassing for people to get – people who can’t tolerate any stimuli for instance. They’re just so far out of the mainstream that it’s hard to fit them into what people know. It’s probably best not to lead with them. (Note though that your work caused him to dig deeper :))
Most people, though, have difficult but more understandable stories. If you look through the stories on Lives Interrupted you’ll find that most stories involve “professionals” in good-paying jobs including quite a few doctors and healthcare workers.
I would go with those and getting stories out of people who we can all relate to was one of the prime reasons for doing Lives Interrupted.
Hi Jude
So true, the suffering we experience with chronic illness seems to cascade.
When I first started doing recovery story interviews, I noted how many people used to say “it’s been a spiritual journey” – whilst respectful, I internally rolled my eyes.
Years later I understood what they meant.
Finding a way to experience peace in the face of all the symptoms and the fallout of chronic illness really seems impossible at times – finding a way to make peace with such things may indeed be a spiritual journey!
Well said.
You don’t know what calm is, trust me.
You are like they say in the famous documentary unrest, hysterical, and your brain waves will stay in that state until the blood flow to and out of the brain will be in a normal flow.
I don’t know how hard and how long are you in, but I think I am on to something now.
From 19% to 100% in 55 months and on a day I got fine 15.11.2023 my mind felt so great that I developed mania- you fell so grat and so much love that you think you are a god, and than depression and great anxious, energy boots with no sleep for 36 hours and I was active it was a crazy 3 weeks ride. I would probably go mad but I know these stages from my wild wild youth and I stop the madness.
Now like nothing happened except that I am old now was carlees young man 35 when I enter it, lost like all of us everything, now I am 40. But is crazy to write this here where people suffer for 40years +.
In the next two months I will contact Cort whit my thesis how to unlock it.
But one thing is for sure and I come up with these sentences when I was still quite seek: The state you are in is making you seek.
And just somthing to add it. I was reading healthrising for probably 3 and a half years and also all the commets, well I find in september 2023 that the Cort was the edditor, that was my focus.
Woth Love, Mike
This is a tricky one. I’ve worked so hard (and methodically) for 12 years and made real progress. But what we are finding is that I have several other conditions that they balled up with the fibromyalgia and cfs that has blocked complete recovery. I’m sitting at around 65%. Endometriosis surgery earlier this year, learning to live with POTS and interstitial cystitis and now working with a chiropractor to keep my sacroiliac joints from going back out. I feel like I’m in a game of whack a mole. These additional conditions were only identified in the past two years! If medical professionals would not dismiss young sick people then they wouldn’t get so sick – I was ignored for so long. And all the brain work, all the relaxation techniques and healthy habits can’t really combat all the unmanaged ignored conditions. How far ive come gets a bit discouraging when im so far from “normal” and everything goes down hill so quickly. I’m hoping to get to the next 10% next year.
I cobbled together my own plan and then tried to stay with it. I had set myself a very low trajectory, (Bruce Campbell PhD) trying to avoid getting worse for a start. I followed my symptoms and tried to work out what made them worse and what, if anything, improved them. I was intolerant to most food and could only eat a few things. Food could affect almost every part of my body and brain and my throat would swell up etc.
So, by trial and error I found that certain food would set off my sympathetic nervous system, which in turn would make my food reactions worse and I was hardly sleeping. I looked up all sorts of diets and picked out the food that I could tolerate and was health promoting. I tried to focus on calming my sympathetic nervous system and deliberately enhancing my parasymp ns, whenever I could.
I tried to steer my sleep into some sort of pattern, as my circadian rhythm was wrecked and I tried to eat at the same sort of time, each day.
I also took a range of supplements, probiotics, psyllium, apple cider vinegar, olive oil, ginger, turmeric etc.,
What helped me, I think, is that I’m a fairly methodical kind of person. I love routine. So, I set up what I thought was a good idea and essentially stuck to it (with lots of adjustments and mishaps).
I prioritised rest, as much as I could and have lived a fairly boring, repetitive life for years. I consciously attempted to stay within my capacity, when I figured out what that was. I’ve been fairly ruthless in avoiding people and situations that stress me out, as far as possible. My life has completely changed and become fairly small but that’s essential.
I was aware of Dan’s ideas, from his free videos and it was him who pointed me in the right direction for me. Even though I didn’t believe his ideas would work 🙂
Hi Tracey
Glad the information has supported you and that you are making progress.
It sounds like you’re doing a great job – it’s not easy that’s for sure.
Keep building on your approach!
Hi Dan,
In terms of subgroups, what has been your experience with ME patients who also have Ehlers danlos / hyper mobility / skin laxity? Does they tend to recover from ME but still have the collagen issues or what kind of pattern have you seen?
Thanks, Patrick
Yes absolutely seen people with this.
It’s my view that these issues trigger ME/CFS because they put an additional strain on the body to compensate for the lack of vascular tone.
Like everyone who has a comorbid condition that triggers their ME/CFS, it makes it harder to recover and makes them more vulnerable to relapse. However, I have still seen people make excellent near full and full recovery progress.
Thanks Dan. That’s very encouraging.
So, just to be clear, what you are saying is that, from your observations, people with collagen issues can recover from ME/CFS itself – and live a normal or near normal life – but you have not seen the collagen issues themselves go away?
Thanks.
Yes that’s right.
The collagen issues are genetic – I have not seen anyone recover from that, but I have seen both partial and full recoveries from ME/CFS/Fibro/POTS.
I do think people with these issues have to take extra care after their recovery and be mindful not to overdo it because their system is under extra load. So let’s say a conservative version of normal life, not the cross-fit version 😉
Got ya, thanks very much.
I’m skeptical. Anytime someone claims to know of recovery for many people with severe ME/CFS. The suggestion that we just need to be more compliant, & more committed to the program sounds like victim blaming to me.
That said, I understand the concepts of brain retraining & pacing are promising. I’d like someone who’s skeptical now to try this approach & see if they recover or improve. It should be someone who’s severe & had ME/CFS for at least 20 years. This is the person I’d find credible. Otherwise, it’s just someone selling something telling us it works. That shtick has been around forever.
Oh gosh yes. I’ve had so many health professionals tell me I’m just not being compliant enough. That bit of this interview really HURT to read. As a classic CFS A-type personality, I look back and think there’ve been plenty of times I’ve been waaaay too compliant. Like when the male qi gong master kept kissing me on the lips during my private sessions with him as a very sick 19 year old, but I still did his exercises religiously every day for a year with no improvement. Yeah, I’ve proven the placebo effect definitely doesn’t work for me. I don’t need to try yet another thing with a whole heap of mere anecdotal evidence where I’m going to be told I just didn’t try hard enough if it turns out to – surprise surprise – not work for me.
Bullseye! Totally agree with you (see my response to Deanne)
Sorry to hear about that aweful experience you had – sad to see folk taking advantage of people like that.
Yes, we get totally burned out trying things and frankly, the best thing is to pull back rather then trying to force yourself. When we are ready, we tend to have another go to improve things.
However, I would strongly discourage you from trying ‘another thing’. Look, if there was some panacea cure, we’d all know about it! As you understand more about how this illness works, it becomes clearer why there is no such single thing. That’s not to say there aren’t really effective treatments and strategies existing and emerging (check out my interview with Professor Thieme on my podcast) – however, even in those cases you will see that there are subgroups which respond differently.
The key is understanding WHY they respond differently. That allows us to use the right treatments and approaches – both at a symptom and a root cause level.
I encourage to watch all the parts of the interview – as you can see, my message is to get away from trying another thing and move towards a more systematic way to make recovery progress.
I certainly agree with Deanne and Jennie regarding the burden of responsibility to engage in self-care and finding the right combo of mind-body practices, heathy nutrition, supplements, sleep habits, disciplined pacing, helpful prescription medications etc.
I have been lucky to have many privileges that helped me recover/improve multiple times since the onset of my ME journey in 1990 that included multiple minor and major setbacks over the years related to a head injury, PTSD trauma, COVID vaccine reaction and most recently long COVID that lasted 7 months. Each time I had to figure out what combo worked for me. My “privileges” included degrees in biochemistry and medicine with extra training in integrative medicine and clinical hypnosis. I am also lucky to have a conscientious personality, a supportive family, income disability insurance when I needed it and part time professional work i love.
Most people living with ME have multiple barriers that make self- management hugely challenging.
Perhaps it would be useful to consider the concept of the TB convalescent centres 80+ years ago before the TB antibiotics were discovered. Patients were cared for in a stress free environment, fed well, played cards in a sun room, listened to music etc. Many recovered after a few months. Of course, ME would require more personalized complex care.
The patient’s job is to heal. Not everyone is able to take on the extra job of selecting, coordinating and executing a complex self-care program in spite of well-meaning guidance from professionals in the field.
Well I think there is nothing wrong with skepticism, to a point at least (sorry flat earthers).
I don’t think it’s as simple as “more compliant, & more committed” – indeed that sort of thing CAN be like victim blaming because it suggests people just didn’t try hard enough or do things well enough. In reality, recovery is much more complex (which you hear in the recovery interviews where people try hard and fail until they have their breakthrough). I actually have seen many people hurt by this sort of narrative and find it quite upsetting.
Having said that, in some cases it really IS a case of needing to be “more compliant, & more committed” – so there can be opportunity to take more responsibility and get better results. However, I think we always need to be compassionate because it’s not as simple as that much of the time. So this whole thing is not so black and white – hope that makes sense.
Look, when I started my advocacy work, there were no recovery stories or interviews. That’s why I started them to bust that myth that it wasn’t possible.
Frankly, if you haven’t come across any such experiences and then someone tells you that they “know of recovery for many people with severe ME/CFS” then it makes sense to be skeptical. The answer is to simply find out the truth – and that’s not so hard now.
Since I started, not only have I published numerous interviews with people that were severely ill (you can listen to them yourself and recognise that these people had severe ME/CFS before recovering), but you can actually find countless recovery interviews on YouTube now. Yes some of them are by people promoting their own programs, but many are still independent recovery stories (frankly those are my favourite ones, not to say that the others don’t have value also).
So don’t take any one person’s word for it – you can EASILY find out for yourself. 😉
Hope that supports you.
PS: not sure if you had a chance to listen to all the parts of this interview or not, but my whole message is that “IT” DOESN’T work! There is no single magic panacea cure or strategy to cure all people. What is required is a multi-lateral approach that has to be personalised.
Not sure if’s clear in the thread – this reply was for you Deanne.
What an absolutely outstanding interview.
From all the research I have done I am now of the belief that recovery is not a possibility, but a probability if the right. balanced approach and the right mindset is used.
Many thanks to both of you.
Thanks Cort and Dan for this interview. I can understand some of the commentators who wrote that they felt hurt by Dan’s point that everyone can even recover from the severe level of ME/CFS.
I don’t believe it’s true. I have heard stories of people who are most severly ill giving interviews to journalists. They have often been sick for decades. Sometimes since they were kids or teenagers. They are able to care for themselves so well. They know exactly what works for them after so many years of being so ill. They have never given up hope and decided to continue living.
They are the true heros and heroines of ME/CFS in my view. One of them is Toni Bernhard who has written How To Be Sick and has tought many people to learn to live with a severe level of the illness and try to live at their with the illness.
In the other hand I will definetely come back to the interview and your advice, Dan, when I revise my Wellness-Recovery-Action-Plan (WRAP) the next time.
I am working with that format that was developed about 20 years ago by a group of people who experienced great challenges to their mental health and were totally frustrated with what the doctors could offer them, namely, the advice to go on disability for the rest of their lives.
When I fell ill with ME/CFS I was already an experienced “wrap-per” because I had struggled with reoccurring depressive episodes in my twenties and early thirties and just as the folks mentioned above found conventional medicine with their psychotropic drugs and talk therapy useless if not harmful.
WRAP offers exactly what’s your advice, Dan. It gives the power and responsibilty for their health back to the people and offers them a systematic approach to train themselves to become their own best advisers in their wellness and recovery.
It can be learned in a group format in online courses with the Copeland Center. However, it can also be learned in a self-paced correspondance course format with the little red book WRAP which offers the course in a nutshell and not on 200 plus pages. So it’s also accessible for people with ME. For people without resources there is even some funds available.
I am trying to find video on Dr. Klimas explaining the difference in the immune system (cellular) level that she found between Gulf War Syndrome and ME/CFS. Can anyone tell me what year and what conference to look at? I think it might be back in 2018…..
Also, if you want an update on Dr. Klimas’s “reboot” human trials look at 2022 Shield Conference GWI 21:37. 2022 INIM Conference 15:33
I am thoroughly enjoying the conversation lads.
For me I had to stack many treatments in order to get relief. I had to treat a chronic major bacterial infection, heal my gut from that, re-wire my ANS, identify and remove many food allergies together, reduce stress (including finding stable housing), get out of toxic relationships, supplement nutrient deficiencies, take an anti-viral and LDN, effectively pace, sleep well and then I experienced living free from symptoms. There were many other things I tried that didn’t make such big difference. If I only did one or two at a time I’d still be experiencing symptoms and feeling shit. If I let too many slip together, hello symptoms.
I maintain hope of further improvement everyday. The times I lost hope for improvement were my darkest days. I often wonder what was the driving force that kept me optimistic, hopeful and motivated to keep trying new things. Recovery stories certainly helped. and like Dan, I just couldn’t accept a life of disability (diagnosed at 20, now 42) because I love being fit, active and engaged with life. I recognise not everyone has this same approach.
I also realise I was adequately resourced with safety, money, Medicare, adequate cognitive function and access to helping professionals.
Relationship stress is one of my biggest triggers. I can micro manage my diet, sleep, movement etc but I can’t control other people and sometimes they create stress for me. Despite years of therapy, dedication to relationships skills, and nervous system regulation skills, I still get dysregulated and overwhelmed by this stress sometimes. And a flare ensues.
I have really enjoyed this interview series. It has given me new things and perspectives to think about which are helpful. I’ve been severely ill for 18 years this month but was struggling way before that. I had been diagnosed with multiple things along the way. From the long view of my life, it seems that I had difficulty as a child and those problems slowly progressed until my body finally crashed 18 years ago. I don’t know if this has been the experience of others but many of my symptoms I’ve had since childhood. Latest diagnosis has been CFS and POTS. These finally got me to answers and help that have slowly made a difference.
Thank you!