In Pt. II of our 4-part interview on how people with chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) recover, we cover the following topics.
- I ask what did CFS Unravelled bring that was new – a single explanation 0:00:22
- Dan challenges the model of healthcare – “forget a cure?” 0:04:24
- Dan talks about how to define partial & full recovery 0:09:46
- Dan explains how ANS dysfunction explains the different recovery paths 0:11:26
- I ask Dan about his experience with recoveries 0:21:46
- I ask Dan about broad themes in various recoveries 0:34:53
If you have questions for Dan, please add them in the comment section and we can try to cover them in a new interview.
Resources
- Download the first 10 Chapters of Dan Neuffer’s book CFS Unravelled for free
- Dan Neuffer’s YouTube Channel
The Dan Neuffer Interview: Part II
Dan rejects the idea that there is one magic cure because of how many different types of ME/CFS/FM there are. If you look at these diseases from an autonomic nervous system (ANS) dysfunction aspect, that’s not a surprise given how many systems the ANS interacts with.
The nervous system, he proposes, is under an onslaught that’s “just crazy”. With all the problems people with these diseases have with their gut, their cardiovascular systems, etc., their nervous systems are going to get pounded with an overwhelming number of signals and stimuli – causing them to move into high alert – and ultimately, to overreact to everything.
Note that this idea that our nervous system, in particular, is overreacting to stimuli is not new to Dan.
The Dan Neuffer Recovery Interview Series on Health Rising
- 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!”
An Aside
Research has shown that multiple parts of the central nervous system (CNS) are overreacting to pain signals in fibromyalgia. Plus, the pain inhibition system is not kicking in. It’s a CNS on edge.
The drops in prefrontal cortex oxygen levels seen during exercise in ME/CFS suggest that exercise may result in the loss of control of the limbic system (including the amygdala – the seat of the fight/flight response). An unrestrained amygdala/limbic system – perhaps the fastest-acting system in the body – could be responsible for the enhanced fight/flight response (sometimes called an “amygdala hijack“) seen in ME/CFS.
With the inhibitory brake of the prefrontal cortex gone, the sympathetic nervous systems of people with ME/CFS react to the slightest stimuli, leaving them tired and wired, their blood vessels constricted, their guts cramped up, their heart rate racing, etc. It’s perhaps notable that both the major stress axes of the body, the autonomic nervous system and the HPA axis, are affected in ME/CFS – and both regulate the immune system.
The Japanese take the prefrontal cortex problems one step beyond its well-known association with cognition. They believe that damage to a part of the prefrontal cortex called the dorsolateral prefrontal cortex (DLPFC), which regulates movement, is impairing our ability to recruit muscles during exercise. Because the dorsal lateral prefrontal cortex appears to decide which process – energy enhancement or the induction of fatigue – is going to prevail, the authors hypothesize that metabolic, functional, or structural damage to this part of the brain is key to the development of fatigue in ME/CFS. Their model even proposes to explain why attempting to push through the fatigue makes it worse.
Likewise, Jarred Younger believes that the immune cells of the brain – the microglia – are on a hair trigger – and at the slightest sign of stress are telling the nervous system to produce flu-like symptoms such as pain, fatigue, sleep issues, cognitive problems. Michael Van Elzakker’s vagus nerve stimulation hypothesis provides another way for immune issues in the body to amp up the central nervous system.
Either way, you have a situation where the central nervous system is overreacting to signals coming from the body – and amping them up
The Neuroinflammation Man: Jarred Younger on Inflammation, Fibromyalgia and Chronic Fatigue Syndrome
The severe fatigue state found in ME/CFS potentially adds more spice to the mix. In one of the more fascinating – and potentially revealing – studies I can remember, a 2015 study found that as the healthy controls became more fatigued, the parts of their brains involved in mental processing begin to disengage themselves. Two core regions, in particular, the prefrontal cortex and the anterior cingulate cortex, shut down.
As these regions shut down, they begin to lose control of autonomic functioning. In particular, they begin losing the ability to activate the parasympathetic nervous system and tone down the sympathetic nervous system. Since this happened in healthy controls, it appears to be a normal consequence of severe fatigue…
The upshot is that a variety of ways (activated pain production system/inhibited pain inhibition system, underperforming prefrontal cortex/hyped up limbic system, autonomic nervous system dysfunction, activated microglial cells, being severely fatigued) exist that could result in a twitchy central nervous system that’s raring to produce the symptoms found in ME/CFS/FM and related diseases.
Note that this doesn’t mean that problems in the body do not exist and that ME/CFS/FM are solely brain diseases. Problems in the body may very well exist, but their effects are being amplified by the brain – which is, in turn, producing the flu-like symptoms we see during infections.
Dan’s program – which I have not taken – appears to try to take the edge off an overactivated fight/flight system by “retraining the brain” to stop reacting so much. Note that this reaction is not a conscious reaction; instead, it’s a biologically driven process produced by the fastest reactor in the brain – the limbic system.
Back to Dan – and How He Stopped Counting How Many ME/CFS Recovery Stories He Found
Dan believes that the brain and the autonomic nervous system can be slowly retrained to bring down the reaction, and notes that countless ways of retraining the autonomic nervous system exist.
Dan may have been the first person to actively chart ME/CFS recovery stories. He noted that when he was sick, he didn’t know anyone with ME/CFS – let alone know anyone who had recovered – and indeed, back then, it was rare to hear of people with ME/CFS who recovered. (Now if you look on YouTube, you can find hundreds of recovery stories. (Health Rising has about 70 recovery/recovering stories of all kinds – and we’re about 10 behind).
Once Dan started communicating about recovery, though, the stories started popping up. When I asked Dan how many people he’s spoken to that recovered – he said that “he stopped counting – a long time ago”. Via personal connections – he’s talked to several dozen people, via interviews – about 60, and the people he’s interacted with via social media run into the hundreds.
Not all were 100% recovered – but all were at least 80-90% recovered. The not fully recovered group included some people who were recovered but just didn’t realize it yet, and others who were symptom-free but were not fully recovered. In his mind, being fully recovered means that you can get an infection, not sleep well, be in a stressful situation, etc. – without experiencing a flare-up. Recovery does not mean that someone cannot get ill again. He believes that anyone can get this illness.
He also believes he can actually spot people who recovered – many of whom were never diagnosed with ME/CFS – but all were seriously ill – many of whom were not sure how they actually recovered. One way to find recovered people is to talk to your local naturopath or yoga teachers, and if you talk to enough of them, you’ll find people who ended up in these careers because they got passionate about health.
Dan believes that virtually anything – really anything that stresses the body – whether it’s unmanaged type I diabetes or PTSD or whatever – can trigger ME/CFS/FM. Essentially, a personalized approach is needed. If the ANS Rewired program doesn’t work for someone – he recommends that the participants dig deeper into their biological issues – while continuing on with the program.
Broad Themes to Recovery?
I asked Dan if he’d seen any broad themes in the recovery stories. While he encourages people to be positive when they listen to recovery stories, he also encourages them not to drop their skepticism either.
In his recovery story interviews, he’ll invariably find that people did more things than they first mention. People who recovered using say, functional medicine techniques, will often start relating to their pain or their stress levels differently at some point. As they started feeling better and their worries about getting better receded, that helped them on their recovery journey as well.
Dan noted there are many aspects to pain (anticipation, the meaning we give to pain, etc.). (This is called the “affective” side of pain. Anxiety about pain, feeling hopeless about pain, being upset about pain – all serve to increase the pain experience, in part by activating the fight/flight response). Comprehensive pain management clinics now typically include pain management techniques (essentially neuroplasticity practices) such as meditation, mindfulness, MBSR, acceptance/commitment therapy, etc., to help address the affective side of pain.) As Beth Darnal, the director of the Director of the Stanford Pain Relief Innovations Lab has shown, these practices can be as effective as other therapies at relieving pain.
In any case, Dan favors a multilateral approach that works on multiple levels – fixing what’s going on with the body while retraining the brain at the same time. Sometimes, he said, patients are just missing one or two pieces of the puzzle. Virtually everyone who recovers, though, does a number of things together – and that he believes is the secret to recovery.
- If you have questions for Dan, please add them in the comment section and we can try to cover them in a new interview.
Resources
- Download the first 10 Chapters of Dan Neuffer’s book CFS Unravelled for free
- Dan Neuffer’s YouTube Channel
- The Dan Neuffer Interview Pt. I
The Dan Neuffer Interview on Recovery From ME/CFS and Fibromyalgia: Pt. I – Dan’s Illness Experience
Health Rising is not affiliated in any way nor receives any funding from ANS Rewire
I believe the reason there are now hundreds of recovery stories out there, when there weren’t in the past, is in part because people have now heard of ME/CFS and are either self-diagnosing or being diagnosed by doctors who don’t know much about the disease. Also, social media just means we hear a lot more stories than we used to.
Maybe some of these people have recovered from ME/CFS. Certainly some of them have other conditions but think they have (or had) ME/CFS and recovered. But we can’t know which is which, without diagnostic markers.
I read every recovery story with a hearty dose of skepticism. The first thing I filter for is whether or not the primary concern is PEM. If not, then it’s likely not the same disease I have, so probably irrelevant for me. Frankly, I would happily live with every single other symptom of my illness if only I could lose the PEM (and so live a full life, even if I wasn’t entirely comfortable).
If I took all these recovery stories seriously, I would have gone down 100 rabbit holes over the past two decades (I went down a few in the early years). And some of those rabbit holes could easily have made me much sicker (lightning process, I’m looking at you).
I learned, from my body, that pacing is the one thing that reliably protects me, and for me, it has paid off pretty well, taking me from completely bed bound (for 5 years) to fairly functional (I can work very part-time and socialize and care for myself).
In addition to monitoring and carefully doling out my physical, emotional, and cognitive activity (and taking a couple of days in bed whenever I overdo), I also need to avoid particular exhausting things that I had to discover one by one (lifting a very heavy object even briefly, getting chilled for more than a few minutes, riding in a car for more than a couple of hours, etc).
I suppose this is my “recovery” story. But I think it’s one that everyone with PEM will likely live out one way or another, if they are able to manage it. It takes crazy amounts of self-awareness and self-management. But, in my case, it’s given me a pretty good quality of life back.
Oh, and for anyone who thinks that hyper-vigilance is the problem, I will just say that, until I learned to be vigilant, I was in a nightmarish downward spiral. And to this day, it’s the times when my vigilance slips that I end up in setback. As long as I’m aware and cautious, I do quite well.
Well summarized Agatha..this resonates with my experience anyway
Another excellent interview with Dan! I can’t wait for the third one. I really love how the two of you are having a conversation that you both are obviously enjoying! There’s so much benefit to sharing our knowledge and hope with each other.
Thanks for your comment Robin – glad you enjoyed it.
Next one should be up in a week. 😉
Hi Agatha,
I think you are right, some people who ‘recovered’ didn’t actually have the illness. That’s why I always focussed on drilling into how people became ill and what their symptoms were in quite some detail. Some people find that annoying as they just want to focus on the recovery part, but I think it’s important to verify that someone actually experienced the same illness as us.
Certainly people on the ME/CFS end of the spectrum will find PEM the primary issue, but people with Fibromyalgia often don’t (many do better with activity within reason).
Glad you have managed to increase your quality of life through education and understanding – I think this has to be the foundation of any level of recovery!
Thanks for your comment
Thank you for sharing your story Agatha, it’s been really useful to read. Glad to read of your implements 🙂
Yes yes yes.. first sensible recent comment…I could feel your restraint in every measured word.
Has it occurred to anyone yet that a first principal of journalism is to reveal any conflicts of interest that could bias reporting.
I recently saw a video where Dr. Arsenault asserted that until you learn to pace you probably aren’t going to get anywhere with your treatments. It is the foundation.
Pacing is so true Cort. I wish i have know this in the beginning of my illness. I am very sure that it would have make a big difference. In combination with Dan’s programm especially to calm down the ANS. I have had GET / CBT did the opposit. I kept going till i dropped because the doctor told me to do, i believed him. He was wrong! Also i have seen real ME/CFS patiënts (three) getting ‘better’ but never 100%. All three around 70 till 80% they told me. But it is very rare.
The devil is in the detail they say.
Indeed I have come across some people that made full recoveries with GET/CBT even though so many don’t do so well at all (or even worsen significantly).
There are some important caveats in such approach, not least of which is recognising that the illness is real and not ‘in our heads’ and that you cannot exercise or push yourself out of the illness.
I don’t know if the way those approaches are taught varies or if it is lost in the implementation.
I didn’t mean that these three people “recovered” through CBT/GET. These people have recovered naturally without therapies. 1 after 7 years, 1 after 11 years and 1 after 13 years. I have never heard of a ME patient who has recovered through CBT/GET.
I think that certainly has a lot of legs and resonates with my experience also Cort.
However, ‘how to pace’ is complex and as I believe we discuss later in the interview, whilst the overall activity has to be within the envelope, we must not be over vigilant as this is sensitising. Stepping outside of our comfort zone appears to be very helpful at times, even if it creates PEM (as long as it’s not excessive and we allow ourselves to recover adequately as opposed to the linear GET approach).
I really appreciated your insight about the ‘uplifts’ – from memory it’s in one of the later parts of the interview!
Wondering if Dan has had significant relapses or setbacks since recovering.
I find that I hear a lot of people say recovery and then find that they had major relapses, but I do think their bodies find their way back easier esp if they understand pacing etc the next time. They have better strategies for getting out.
I am wondering if you truly had a linear progression of getting better and bam no more setbacks or if you still have subtle symptoms pop up now and then.
Regardless it is wonderful to improve. Just curious.
Hi Kasey
You are right, many people do recover and then relapse. Sometimes a short time, sometimes for extended periods of time.
The key is understanding how and why you get ill, become well and relapse – I feel quite strongly about that.
This is really key to recovering from a relapse in my experience! Often people don’t change their relationship to the experience, making the reversal of sensitisation challenging.
And yes, I did have a setback, quite a dramatic one which I have spoken about in the past. It was early on my recovery. It was actually very severe and after 3 agonising days in bed, I had a sudden and dramatic (dare I say unlikely) reversal following some interventions that I remembered from my recovery. It was a bit of a baffling experience to say the least – took me another week or two to fully recover from it and get my energy back.
Since then I have been fully well from these conditions. Following an appendectomy 5 years ago I suffered a series of severe health events and ongoing challenges from adhesive disease. This includes chronic musculoskeletal problems that lead to difficulty sleeping. Despite all this, I have not had a relapse. Quite surprising really – I have had more stress in the last 5 years then during all my time before that. Obviously I have learned a thing or two – but of course I am not suggesting that I am infallible.
I fully believed in recovery and have tried many things and it has been 8 years of my body being all over the map but never 100 percent. I like Dan a lot but I think it is unfair to talk the way he is to Cort who is clearly still struggling.
I think there could be a little more empathy that the combinations of things to try are literally infinite and that not everyone will find their perfect combination of things and that does not mean it is a moral failing.
I also want to say I think that life can be beautiful engaging and wonderful with symptoms do holding onto the idea that you need to be able bodied to live a wonderful life is silly. I also want to say there are many people who recover who are not fully aware of the safety nets that hold the.pm up.
Having family that is supportive, not having certain responsibilities on your plate etc. people need a perfect combo of things and sometimes that is just not in the cards for all of us. I think there needs to be compassion for that fact.
I have friends who got sick as teenagers whose parents didn’t believe them and carrying trauma like that in and of itself is a barrier to recovery. I think it is wonderful to preach hope and share stories but may we be compassionate that each persons journey is unique and recovery may not be in the cards and that acceptance can be a beautiful surrender and weight off peoples shoulders.
We all have internalized ableism and we need to accept that all bodies are different and we do not know what another bodies story is and what it holds. Just because one persons journey leads to recovery does not mean another persons journey is not valid or is immoral.
Thanks for your concern Didi! Not to worry, though. I really enjoyed talking to Dan and did not think that anything he said invalidated my personal journey. Instead the talk left me intrigued and hopeful.
Dan does believe that everyone has the potential to recover – right now! (We’ll get into that, I think, in the next interview). He has tons more experience with recovery than I do but I have to say that I’m not there yet!
Still, for me, that elicits hope.
Didi, loved your reply. It reminds me of one of my favorite sayings;
“One doesn’t necessarily need to be cured to be healed.”
Wow – that makes me think. Actually, that brings up some emotion to say the least!
Really appreciate your feedback Didi.
I am aghast at the idea that I may be being insensitive. 🫤
Truth is, it’s quite possible at times that I project this. Having seen such horrific suffering in people over the last decade and so much injustice has hardened me in the face of suffering when speaking with people – I simply see it as it is, a fact.
I must admit, it has also strengthened my resolve about recovery and my intolerance to the illness. Not only did I find my own experience with the illness intolerable, but seeing others suffer has reinforced this feeling. It may not be ‘right’, it may not be spiritually enlightened – it may almost be slightly militant at times or lead to expressing extreme unwavering viewpoints. I imagine that part of the reason is that unlike some people, I eventually could no longer manage living with the illness despite my best efforts.
Your words are wise and beautiful “I think that life can be beautiful engaging and wonderful with symptoms do holding onto the idea that you need to be able bodied to live a wonderful life is silly.” I wish I heard them when I was sick, although I imagine I would have struggled with them. Frankly, taking this wisdom onboard may be the first step in anyone’s recovery journey and I always tell people to make the most of everyday regardless of where they are in their journey.
“Just because one persons journey leads to recovery does not mean another persons journey is not valid or is immoral.” – well that is 100% right of course.
On another note – Cort was an absolute trooper recording such a long interview. I was a bit concerned about that at the time and straight after but I think he was OK.
I have been diagnosed with ME/CFS, Lyme, POTS, Fibromyalgia, Mast Cell issues and treated by all of the experts: Enlander, Stanford CFS Clinic under Montoya, Horowitz (Lyme), Grubb (POTS), Vanderbilt Autonomic Dysfunction Center and Chheda. I paid for the Optimum Health Clinic phone program but it was too complicated for my brain fogged mind. I had only gotten sicker and absolutely, completely broke financially (to the point that I paid for Dan’s program using paypal’s pay x 4)!!!
I have had 2 courses of TMS (Transcranial Magnetic Stimulation). During these treatments, I saw firsthand how treatments affecting the brain affect physical dysfunction. I would go in to my appointment feeling like I was going to collapse, unable to stand upright. I would leave the treatment feeling great, able to go to the beach and out to dinner with my family. The only problem is that this TMS treatment success does not last. It is unsustainable to keep having my brain zapped. I have also been using Gammacore Vagus nerve stimulation with tiny, tiny improvement.
Dan’s program is life changing. It covers every, single aspect of what we are dealing with.
Some may say, well your problems must have been purely psychological. Nope! I have had a fever everyday for 12 YEARS, sepsis, ANA that goes from positive to negative to positive to negative, positive tests for soooo many infections. My temp is normalizing with his program.
Anyone who believes Jen Brea’s or Jeff’s improvement with craniocervical instability surgery needs to believe Dan’s research because the brain affects EVERY single part of the body and affects every last symptom. I was told by Chheda that I have craniocervical instability, but I have children and will not have brain surgery unless my life is immediately at risk.
Those who have tried everything and refuse to even humor the fact that the ANS can cause such unbearable suffering, what do you have to lose? The intro videos are free. I bought his program out of pure desperation. I am glad I did.
If you don’t believe Dan’s well thought out research, please don’t down something you know nothing about based upon assumptions. I know that I don’t get to decide what ends up creating healing. I know I don’t have that kind of power. All I know is that the “experts” haven’t healed me. I’m just grateful that I was open to the research and that healing is here.
If you think you know what his program entails by the title or the recovery stories, I assure you that you don’t.
Great job, Dan!
Thanks for sharing, Cort!
Thanks for sharing Angela – glad you are doing better.
Keep building on your progress and make the most of every day along the way.
I’m positive I’ve had ME/CFS and fibromyalgia since I was 17 years old. I’m now 67.
I have “recuperated” at least three times but this last time my symptoms have stayed. I’m moderate to severe re symptoms.
I’ve tried brain “rewiring” and brain stimulation but all have failed. I get much worse after any session of deep meditation etc. I’m not being very clear this morning but basically even working with brain retracing experts I always get worse so obviously I’m extremely reluctant to try again. I get dizzy and faint and can’t sleep at all after a session. Yes, it’s a feeling of failure.
Hi Kathryn,
It’s important to stay self-compassionate. If it is for reasons you don’t know, it’s not your fault. If you are doing something that you know is causing the set-backs, then seek to change your behaviour. (such as pushing excessively)
Ultimately, you are an expert having recovered 3 times. See if you can reflect what worked, what hasn’t worked, but has hindered you in the past. Hopefully you can find a way to get some recovery momentum again.
It’s a frustrating journey – recovering and relapsing is perhaps even harder to cope with emotionally – so be kind and gentle with yourself. Sending you some hugs! ❤️❤️
It has been a confusing journey. The times I recuperated I didn’t do anything different at all. I was young and got back to my active life every time until I completely collapsed twenty years ago. I’m better than I was but not great. 30-40% of normal.
I have changed my diet, tried every med or supplement suggested and I can’t tolerate most. Like many on this blog I’m well educated and keep up with research. I’ve done so much work on my mental health and have worked with experts on brain plasticity and my ANS reacts negatively. Many supps make me sick. So you may understand my frustration and exhaustion at giving another program a try. Thanks though. I’m happy you have been able to help many.
Hi hear you Kathryn!
Frankly the experience of dealing with this illness is just as exhausting as the illness itself.
We can do so much right and still not have results – after all these years and all my experience, I still share your frustration. 🫤
Thank you for your reply. One day something will work.
Thank You!
Cort, who are you referring to when you say ‘The Japanese’…. Any particular research or researcher?
A couple of research papers probably by the Watanabe group, I think it was, which, to my understanding, has dominated research over there. There are links to the studies in the blogs.
Thank you Dan
It is so refreshing to listen to some pure, common sense.
I wonder whether some of the ‘disbelievers’ are actually listening to what you have said, or are they so fixed in their thinking?
They try and find lots of reasons as to why there is no ‘cure’, but ultimately what they seem to have in common is that they are against hope!!!!
No magic pill will ever be found for these sort of illnesses.
I think it’s pretty traumatic having this illness. Such a shock, so much suffering, everyone shrugs their shoulders and often suggest the illness is psychological or ‘in our heads’. That’s a lot to bear!
If that isn’t bad enough, I think we end up trying everything including a lot of alternative stuff that makes big promises and doesn’t deliver. All that is enough to make anyone cynical.
After going through all that, I think some of us simply struggle to put our thinking caps on and look at things calmly and logical.
Thanks for your comment Stuart – appreciate it.
Hi,
I’m confused about how the brain retraining ties in with pacing and resting.
I tried the brain retraining method with Alex Howard and it helped quite a lot. I made a lot of progress initially. He called it the stop process and I did it before, during and after (if needed) doing something I knew would cause me a lot of anxiety and therefore symptoms.
I initially did it only with light activities that I knew my body was able for but was stressed about. But then I became more and more daring and started assuming nearly every time symptoms appeared that they were due to the stress response and anxiety around doing more rather than being due to my body genuinely needing to lie down or slow down.
I’d do the stop process- breath deeply, ground myself, use positive visualisations, relax for a few minutes, tell myself I was safe until I felt safe and the symptoms decreased and then continued on with activities.
This repeated ignoring of my body’s genuine need for rest and slowing down and doing more activity each time lead to a catastrophic relapse where I developed very severe ME and was completely bedbound for three years and unable to care for myself or do anything at all but rest, eyes closed 7-10 hours a day. Fortunately I’ve improved from that state by very careful pacing and luck.
I still do the stop process when I know I’m stressed or over anxious especially when I’m doing a very light activity (for me) and know intellectually I’m able for it. But I pace carefully now and make sure to stay within my energy envelope or expand it ever so slightly when I know I’m able for it.
My question is how does your brain retraining technique tie in with pacing, resting and staying within one’s current energy envelope? How do you distinguish between symptoms that are genuinely telling you to slow down or rest and symptoms that are a result of the stress response?
It’s a long time since I did Alex Howard’s programme but if I recall correctly he said you should only gently bounce the boundaries of your envelope while doing these techniques. (Which I obviously overlooked).
It seems to me that these brain retraining methods can be very dangerous if not explained thoroughly and if pacing and resting are not part of the program because I think the idea can be quite complicated to understand correctly and can very easily be misinterpreted and lead to people pushing themselves into major relapse.
Good question for a followup interview with Dan.
Hi Kieran
Thank you for sharing your experience.
Unfortunately, many people push excessively with or without brain-training.
Even when they engage in other physical treatments, as soon as they feel a bit better they launch themselves into things and we soon see relapses and worsenings. 😢
As per my comment to Gijs above, whilst we can nudge our pacing and do some things occassionally that we expect to be beyond our capacity, we have to balance this and reduce other activities and/or rest if we get some payback. Continuing to push is a recipe for disaster.
Certainly there are some ‘brain-training’ approaches that don’t recognise the physiological side of the illness. Remember, it’s not simply ‘anxiety’ about worsening symptoms here – it’s 100% the actual activities. Otherwise you wouldn’t get PEM following activities that you were 100% comfortable with and thought you could handle!
You really answered your own question here “you should only gently bounce the boundaries of your envelope ” – this really stands regardless of whether you do brain-training or not!
Frankly, just about any recovery strategy can be ‘dangerous’ for this condition. I see people get messed up with diet and treatments and recovery strategies of every type, INCLUDING pacing. In fact, often testing makes people very sick. At the very core of this illness is the maladaptive stress response, which makes us very vulnerable!
If you have more questions about this for another interview, post it and Cort can decide how to include it.
Thanks for an interesting interview. Great to hear your perspectives and the emphasis on the brain/nervous system.
Seems to tie in well with neurological research and hypotheses regarding predictive coding and predictive processing framework, which describe how they think the brain is able to cope with the massive amount of stimuli bombarding it every second (Google them).
As ME/CFS patient, I’ve already tried many things, though currently following Raelen Agle’s approach). In addition, I am currently engaged in working with my perceptions of my symptoms and working to stimulate new neural pathways. While I firmly believe there are physiological reasons that people get ME/CFS, it doesn’t make sense to me to dismiss the psychological aspects, which I believe are part of any chronic illness, not only ME/CFS.
I’m actively applying somatic experiencing exercises and while it’s still early days yet, I expect/hope to continue to see progress. I was lucky to be diagnosed by my own doctor in 2020, at which time she told me that if I continued as I was, I would get worse. I thought I took precautions, but tried to keep working. As she predicted, I got worse, until finally I had to quit altogether and go on permanent sick leave.
I’m somewhat better now nearly two years later and view myself as a (very slowly) recovering person.
So far, the recovery stories I’ve read/heard have taken 3-10 years, so hopefully I can be fortunate to be about halfway there now 😃
Looking forward to part 3.
Thanks for your comment John.
I think we need to think of all this as NEUROLOGICAL rather then Physiological and Psychological.
The ‘psychological’ approach is mostly about affecting ‘neurological’ change.
It’s a bit like when people use their mind to retrain their body to work, but nobody calls that psychological because it focuses on the physiological change of moving rather the physiological change of sympathetic/parasympathetic balance.
Glad you are doing well – keep going!
This is a really interesting article, linking the ANS and the immune system.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8910153/
“Abstract
The autonomic nervous system (ANS) and the immune system are deeply interrelated. The ANS regulates both innate and adaptive immunity through the sympathetic and parasympathetic branches, and an imbalance in this system can determine an altered inflammatory response as typically observed in chronic conditions such as systemic autoimmune diseases.”
“7. Conclusions
The evidence of the interplay between ANS and the immune system are multifaceted and are at the basis of the clinical pictures (such as organ inflammation, pain, CV involvement, and fatigue) of diseases where chronic inflammation is implied. In particular, the potential benefit for a nonpharmacological intervention in systemic autoimmune diseases based on vagal stimulation is an emerging field of interest that is worth further study to confirm its efficacy in improving the symptoms and quality of life of these patients.”
Thank you very much for sharing that Tracey.
Yes, it’s well known science, which makes it surprising when people take exception to these concepts.
Thanks, Tracey! Isn’t that something! Add on the well-known impact of the HPA axis – which is also disturbed in ME/CFS – on the immune system and you have quite a potential impact on the immune system simply from a dysregulation of the stress responses in the body.
While I have never been able to get close to taming my clearly overactive sympathetic nervous system I think being able to do so would probably very helpful in a number of ways.
Since I watched Bill Moyers on his Healing and the Mind series and then purchased the book in the 90s, I have believed that the interaction between the nervous and immune systems is at the root of ME/CFS. I have been waiting for medical science to change its paradigm based on the simple fact that nerve fibers can be seen inside immune system cells as neurologist Dr. David Felten.
I sit here reading the ‘new’ research which seems really to go to the side of this question. This emphasis on the brain stem or this or visible neurological organ misses the point.
The connection between the immune system and the nervous system is inherent at the cellular level. Clearly, signals are being passed back and forth.
I feel kind of crazy reading these innumerable studies and discussions about the vagus nerve, the brain stem, etc. Why aren’t ME/CFS researchers addressing this simple, easily verifiable, in your face fact? Nerve fibers reach into immune cells.
One of the important things about Felten’s discovery is that it clearly dissolves the distinction between body and mind.
I wait and wait for this Western paradigm to collapse as I approach the end of my life. My intellectual career has been very involved in breaking down Western dualisms.
Cort, I would really appreciate your response to this.
“Why aren’t ME/CFS researchers addressing this simple, easily verifiable, in your face fact? ”
Why indeed?
🫤💲💲💲
Well, thanks for your response, Dan. But I am thinking more about the paradigm within the methodologies of the research not starting with this baseline understanding.
Why look at the vagus nerve as a structure and stimulating it, when there are underlying structures and chemical signals going at the most basic level?
If I were looking at ME/CFS and brain structures, I would be asking myself questions at the cell and molecular level. Are those sorts of scientists not interested in ME/CFS?
If they are, why is there support for investigating the macro structures of the nervous system and not the microbiology at the cell level?
From a distance and only dipping into the research infrequently and not delving all that deeply, it seems to use an Emily Dickinson ‘word’ — “slant”
I will go to my grave thinking: why isn’t ME/CFS research looking at this? why isn’t medicine accepting the paradigm shift? why do we even think for a second that there is a brain/body division?
sorry, after a lifetime of waiting — 54 years to be exact since my ME/CFS began — I am just so very testy.
It isn’t just funding. This paradigm shift should be infused in all approaches to ME/CFS and many other illnesses.
My ‘mind,’ influenced as it is by my irritated immune cells, is constantly looking for this paradigm shift go much further than “meditate to heal — we don’t know why it works, we just know it works.”
I don’t even feel capable of phrasing this the way I would like because there is a lot of stress involved in waiting around for this to be addressed.
forgive me please
The easiest product to sell is one in a pill box.
Look, ME/CFS is not alone here. Ask yourself, why do people get the medical interventions they get with type 2 diabetes or with high cholesterol.
The machine is far from perfect and far from patient outcome focussed.
I’m sorry, I can’t decipher what is the suggestion / treatment to try?
Hi Caroline,
Hopefully things will become clearer in the coming videos.
But that is the point of this video – it’s not about some single treatment – that is the wrong model of health.
Health is not achieved through ‘cures’ – such things don’t really tend to exist, they are mostly a myth.
It’s about focussing on resolving the root dysfunction and doing so through brain-training and resolving personal triggers and dysfunctions – which is why a tailored approach is required rather then looking for some panacea cure.
correction:
I have been waiting for medical science to change its paradigm based on the simple fact that nerve fibers can be seen amongst immune cells as neurologist Dr. David Felten discovered at least three decades ago
I was imprecise in my earlier comment and wrote a sentence fragment.
I just took out my Moyers book and did a search for Felten’s papers and was reminded he is a MacArthur Fellowship (genius grant) awardee. Thank goodness.
Somewhere in my files I have an early article by Felten which has pictures of immune cells with nerve fibers clearly visible on slides he produced in his early work. I kept that article because of the pictures it included.
At first he thought, this cannot be what I am really seeing. “. . .and there sitting in the middle of these vast fields of cells of the immune system, was a bunch of nerve fibers. I looked at them and thought, what is this? Nerve fibers aren’t supposed to talk to the cells of the immune system. What are they doing here?”
I don’t know if this link will work for people but here is one of his earlier articles: https://journals-physiology-org.proxy1.cl.msu.edu/doi/abs/10.1152/physrev.1995.75.1.77
I’m currently in a relapse and working on a number of things together to help my chances of improving, and keen to be open minded about all aspects of health. I’m meditating, doing breathwork, working on mental health, nutrition, supplements, pacing etc I am currently bed bound and have been for many months. I am able to move around but it feels horrible (like gravity is pushing me down/ heavy body/weak) and lying flat seems the best thing I can do at the moment. I want to ask, based on his experience of trying to help people recover, how to proceed when in this state (what have you observed when people are so ill and then get better- are there long months of no improvement? And is this not nec a bad sign) . Do I wait until the day I don’t feel this symptom (haven’t felt free of it for months), or do I slowly move around (or is this pushing?) with this sensation and test the waters? Or do I accept being bedbound until something shifts. I hear a spectrum of experiences.
(I’ve noticed this ‘heavy body’ – fatigue?
feeling seems to be described by those with other autoimmune conditions also. Is it inflammation/ mitochondrial dysfunction, a blood- brain issue? ) these questions are open to anyone, really curious. I’ve seen some Health rising articles that seem to be slowly uncovering this mystery) one element of my approach is aiming to calm my nervous system in order to try and let my body heal, and just hoping in time something will shift.
I don’t know what Dan or Cort would say, but I can tell you that my own experience (from being bed bound for most of 5 years….much better now, many years later), the trick was to find the degree of inactivity that would allow the bad feelings to lift. For me, at my worst, that meant not sitting up in bed for more than 5 minutes at a time, not doing mental work (like reading or writing these posts), crawling slowly to the bathroom, and carrying on like that for days and days or even weeks until I started to feel a bit “normal.” Then continue as before, only increasing by tiny increments, with the standard that you should NEVER feel that heaviness, if at all possible (anyway, that’s the goal).
Within a few months, I was able to spend some time out of bed. Within a couple of years of really mastering this, I was able to get out of the house a bit. Now (15 years later) I’m “well” enough that many people don’t even know I’m unwell. I can work a couple of hours a day (I’m a math tutor), care for myself, and socialize fairly normally (as long as it’s sedentary activity).
Aside from the absurdly meticulous pacing, the biggest thing I learned was to be particularly careful about not overdoing two days in a row. If I overdo, according to my own metrics or according to my sensations on day two, I take a couple of days back in bed. This is an ironclad rule. It’s only when I instituted this rule that I stopped having catastrophic setbacks.
I know that some people have an even more limited “energy envelope” and can’t sit up in bed or do almost anything without worsening the illness, and therefore can’t get onto this healing path. If that is your situation, then pacing, though essential, may not bring improvement. I will leave it to the experts to make suggestions in that case.
Oh! I just realized I do have two suggestions for those who are bed bound. Because orthostatic intolerance is clearly part of the issue if sitting up (much less standing) is a problem, I have sought out ways to address orthostatic intolerance. The two things I have so far found most helpful are putting 5 inch risers under the head of my bed (read up on this! it alters your orthostatic process in very real ways) and hydrating with WHO dehydration packets. The truth is that I haven’t had a truly serious setback since I adopted these two things…the risers all the time, and the dehydration packets when I’m more active than usual.
Wishing you good luck and improvement soon! It’s a very hard thing to bear. Sending a big hug.
To clarify: The “catastrophic” setbacks that occurred until I became religious about pacing sometimes set me back by a year or two. The “serious” setbacks that disappeared after I got the risers for my bed were setbacks I was still having occasionally lasting two or three months. Since I got the risers about 6 years ago, my worst setback has lasted three weeks (knock on wood), and most are about three to seven days….but only because I follow my ironclad rule about getting straight into bed as soon as I realize I’ve screwed up, and not emerging from bed until I feel truly “normal” again, and even then being cautious about getting back to normal activities. (By the way, I meditate and take supplements and eat carefully, and am in long-term therapy, but I have no sense that any of those things have affected my illness…but they help my overall well-being.)
Thanks for sharing your story. Can you provide a link to what kind of risers you use on your bed?
Hi Tammy! Here are the ones I bought, but I see they aren’t available anymore: https://www.amazon.com/Height-Adjustable-Bed-Risers-Black/dp/B000LHAKQ6/ref=sr_1_15?ie=UTF8&qid=1406480671&sr=8-15&keywords=bed+risers+adjustable
But here is another type with good ratings, also adjustable (I set mine at 5 inches):
https://www.amazon.com/Nicunom-Furniture-Adjustable-Elevation-Heights/dp/B0C1BPHHXW/ref=sr_1_44?crid=38G4SKA4OX9PY&keywords=bed+risers&qid=1699396953&sprefix=bed+risers%2Caps%2C93&sr=8-44
There are many kinds available, at different heights. Just make sure they look safe (bed legs won’t pop out because insertion place is deep enough). I hope this helps!
Thanks for the reply. Appreciate it.
Thank you for your advice, that’s very useful. My issue is that I have this symptom 24/7 and I do very little, it just hasn’t lifted for months. Did you have long stretches of time just feeling the same until something lifted ? And was there absolutely no heaviness at all when you slowly improved ? Feeling a bit worried now :-/ I’m confused because I’ve read some people describing their autoimmune fatigue in a similar way but seem to be moving about with this symptom until it lifts. I don’t really have anything else but occasional sleeping issues, I sometimes feel totally normal/ energetic but my body just feels heavy. I’m just hoping with time and rest and doing what I can with hydration etc I’ll improve . I don’t feel like I’m worsening though, just the same and some symptoms like bad sleep have improved.
‘the trick was to find the degree of inactivity that would allow the bad feelings to lift’
I guess this is my issue and I’ve been trying and resting very well, but it’s just a constant symptom. I don’t feel worse over time though, just hoping it will slowly ease. It works like that for some people who are severe doesn’t it? It just slowly gets better. I wish I had a window when that particular symptom went away and then I could work with it :-/
From your comments, I’m wondering if part of the challenge is thinking that activity during a particular time period or day should map to symptoms or lack of symptoms. But that is not how this disease works. My heavy feelings did not lift until I was truly extreme about doing nothing all day every day for weeks (not sitting up beyond 5 minutes, not conversing beyond 5 minutes, not reading or writing beyond 5 minutes, spending all my time lying in a quiet place doing nothing). There is something intensely cumulative about this illness, and it’s asking us to STOP, because our bodies have somehow forgotten how to produce energy, and when we use any, our bodies can’t replenish at all. And it takes weeks, months, whatever, for our body to make up for tiny energy expenditures.
Thank you Agatha, this has been really useful. I think on reflection the reason I’ve been also struggling to recover for the first few months was stress and emotional upheaval as i found it deeply traumatic of course! But in the last few weeks I’m much more settled, so im partly wondering now that sleep / emotional stress has gradually been resolving, perhaps that was taking such a huge amount of my energy, and I’m hoping the little I’ve been doing with the stress reduction will show gradual resolution in symptoms rather than cutting back further. But i hear what you’re saying and i will try what you suggest and I’m comforted to hear that it wasn’t instant resolution of symptoms- it took weeks to see the results of cutting back so intensely . I’m very inspired by your story, thank you for you help! 🙂
I’m so glad you found my comments helpful. I’m just one person, but I know others who have had similar experiences of pacing, so maybe it will help your recovery as well.
And I agree that the stress of the early months of the illness inhibits recovery. Acceptance, as hard as it is, is key to improvement.
Best of luck on your journey. I will note that, as hard as it has been, life is on the whole still sweet.
Tereza, I’m so sorry that it’s so hard right now. When you say you do very little, can you clarify what you mean? For example, when I was at my worst but beginning to figure out pacing, I could not have participated on this forum at all. I had to do *literally nothing.* (I was fortunate then to have family members who covered for me, including taking over the care of my young children 100%.)
If it’s at all possible, if I were you, I would do as the sickest do: darken your room, put on an eye mask, sit up only to eat quickly (the sickest are actually on feeding tubes), listen to soothing music or podcasts, maybe allow yourself to watch happy, non-stimulating shows for 15 minutes at a time. Get out of bed only to use the bathroom (baths once a week, briefly, followed by eye-mask rest for the rest of the day), move slowly and gently when you go to the bathroom, limit conversation to 5 minutes at a time, rest very quietly all of the time. Can you do this for a week or so and see if the heavy feeling starts to lift? (If it does, don’t change anything for another couple of weeks, and then increase extremely slowly.)
I know all of this sounds impossible. It felt impossible to me. But it wasn’t. Obviously, you have to have a support person or team to recover in this way. I hope you do.
Oh, and to answer your first questions. Yes, I had that heavy feeling all the time until I worked out my extreme pacing. And then, after a week or so, I had it zero percent of the time unless I overdid (by, for example, sitting up in bed for 20 minutes chatting with a friend…in which case the heavy feeling returned a few hours to a day later, which meant I needed to go back to the original baseline). But I spent many months improving from 100% bed bound to merely house bound, even while being super careful. For me, there was no way around months and months in bed. It was worth it. Learning pacing was by far and away the hardest thing I’ve ever learned.
Thank you that’s really useful to see it broken down. I am lucky to be in a secure position with housing and cared for, so thankfully that’s ok. I don’t really sit up unless it’s for food (or walking to the toilet ) , I’ve sat down for a short shower averagely once a week. I watch about 1-2 hours of tv (but I’ve also gone with none or more), I listen to audiobooks. Probably where I could work on is conversations – with friends, family , therapist. I’ve not been able to have a solid stretch of time consistently doing as little as you’ve stated so I guess it’s worth a shot to reduce even more and increase breathwork/ meditation etc. thank you for your advice 🙂
Hi Agatha,
Thank you so much for all the comments in this thread.
You are sharing fantastic recovery insights for Tereza here.
Most of us get so fixated with the physical triggering (because it is so obvious) that we don’t realise that other things cause PEM. That’s why I talk about understanding the illness in the context of the ANS so much.
I think most of us put physical triggers, physical pushing at the top of the tree for triggering flare-ups, however, what surprises many is that I place it in number 3 with emotional at 1 and mental at 2.
Whilst emotional and physical are obvious, mental stress is probably the most insidiousness because most of us don’t understand what it is. As you correctly point out here, that includes doing things like reading, writing, puzzles – even knitting!
That’s why our focus needs to be on REST. Finding a calm peaceful experience which includes doing things to keep up morale and reduce boredom. My advice is always to spend your spoons moving to a different physical space rather then a cognitive strain like listening to something or reading when we are severe!
PS: congratulations on your partial recovery from such a low, that is fantastic. I normally mainly share full recovery stories, but have been asked to do partial ones also. Your understanding of how you moved out of the low might make for a great discussion on the podcast – contact me via the cfsunravelled.com website if you are interested.
Hi Dan! I will contact you through your website. Thanks!
Hi Tereza,
I am so sorry to hear about how you are feeling.
Not only have I been there myself, but I have seen many others there also – so I get what it’s like.
Look, you said it! “I hear a spectrum of experiences. ”
Cort and I touch on this in the following parts of the interview, so look out for that. But it’s often more about concepts and how we do things and experimenting, rather then a strict formula.
What I would say is that you must overall be gentle and not push excessively. Even showering and such things can be a burden.
A lot of it is about choice – so when you ‘spend your spoons’ make sure it’s on something that uplifts you – changes your scenery.
Another way to think of this is that you should focus on REST. Most people don’t do this. That is why the brain-training including breath work and other things you are doing are key.
But REST is mostly about how you FEEL. It’s not just about calming either, sometimes a little gentle stimulation is helpful. For instance, if you can manage it, doing something uplifting, being somewhere uplifting or engaging in something positive whilst draining, may be RESTFUL to compliment the traditional rest of lying down, sleeping or meditating.
It’s really about changing it up and looking after your morale!
Hope that helps.
Thank you Dan, that’s brilliant and comforting advice.
And thank you so much Agatha for explaining what helped heal you, hearing your pacing advice has definitely made me reflect and I will experiment.
I keep thinking that for those of us who are functional but constantly exhausted right now, a quality of life improvement could be achieved via a blood exchange from a healthy donor. I had to have a blood transfusion after a surgery a few years ago because I lost so much blood and I felt amazing for weeks after getting another persons blood.
I realize all this long-term research is necessary but I cannot find anyone who is willing to try the blood exchange on me as a test for immediate quality of life improvement. I realize there is no money to be made from blood exchanges for big pharma and no doctor is willing to take the risk. It is very frustrating, it seems like such a simple option for those of us who just want to be able to exercise without crashing.
Hi Lee, I had a similar experience after having been the victim of stabbing about ten years ago. It was definitely a physical improvement that lasted ten days to 2 weeks.
Glad to hear you had the same result! I actually got my brother’s blood because I had banked it before my surgery. I wish he could just donate for me regularly and I have one bag removed from my body when he donates and then put his right into mine once my bag has been drawn. It seems so simple and yet I cannot seem to find anyone who is willing to actually put the IV in us and give it a try 😐
I have Ehlers-Danlos Syndrome. If I am honest, I have had an energy deficit since birth. However in the course of my life, with each flu episode, my fatigue grew worse until I now have moderately severe ME/CFS with PEM. As I commented in a previous blog, I’m always asking myself, “Is it EDS or is it ME/CFS? Or both?”
The assistant at Stanford’s clinic made a remark that haunts me; she said that some huge percentage of their patients had some sort of hyper mobility problem.
So Dan, my question to you is what portion of your subscribers have EDS or hyper mobility, and given that it is most likely genetic, what kind of success do these people have with your program?
For myself, like many here, I have tried so many things. I find it exceedingly difficult to pace using body signals yet my body shuts down when it runs out of energy–no guidance from me. In other words, my body is ‘pacing itself.’ The resting between bouts of fatigue is really the only thing that is somewhat helpful.
So Dan, any words of wisdom for people like me?
A small thought, from my own experience: I cannot use body signals for pacing. Not at all. My fatigue rarely sets in until 12-36 hours after activity, so body signals are useless. My pacing is based on calculating what appears to have been sustainable over time, then choosing the 75% mark and limiting myself to that level of activity all the time. And if I start to feel really good, I use that as a signal NOT that I can do more, but that what I’m doing is working. Increases are extremely gradual and planned, not based on my sensations.
Is Dan’s program available in Spanish?
Hi Nancy,
So I would say that it is BOTH.
EDS directly feeds into ANS dysfunction because it is a stressor.
Your sympathetic nervous system, your adrenals have to work much harder to hold things together so to say.
We don’t have numbers as the program is self-help (in any case the numbers don’t matter, it’s more about your personal experience). But what I can say that having EDS is a significant complication and makes it harder to recover in my experience.
However, it does not mean that you cannot recover.
In fact, I have seen both partial and full recoveries of people in the program who had EDS. However, given the inherent stressors of EDS, I think such people need to be more mindful to be gentle once recovered to stay recovered!
Hi Dan, hope you are still reading the replies. First thank you for your kind and encouraging replies. They have had a very positive effect.
Now, after mulling my query ME/CFS vs. EDS, I found this article; https://www.frontiersin.org/articles/10.3389/fneur.2020.00828/ful
lt suggested that the pathways of these disorders are very interwoven. I also ran across a Medscape article (can’t find it to post) which suggests that hypersensitivity of the ANS to stressors plus things like perception of sensation may have bigger genetic underpinnings than previously thought.
In this arena, researchers are still arguing whether people with EDS are prone to more psychological problems than ‘normals.’ Some say they are not and what is mistakenly read as psychological problems is actually an over active ANS influenced by genetics. In other words a hyperactive ANS (as a contributor to ME/CFS) is actually a physical functional/genetic problem rather than a mental one.
But who is to say exactly what is what because all these systems are so interdependent and every person is unique.
Thank you again for your kind words.
We know the brain is plastic. We know that people with EDS can NOT have ME/CFS and then later develop ME/CFS and then recover from ME/CFS.
So regardless of whether genetics are component, I think it’s important to hold onto that.
There is a lot of conjecture, even a lot of ‘fact’ that people fly in the face of. What is the point of hanging onto a negative narrative that has defeating undertones (after all, little you can do about your genetics (ignoring epigenitics 😉))
I would say that ALL people experiencing chronic illness are more prone to psychological problems, just as I would say that all people going through difficult divorces or who lose their children would be more likely to go through psychological problems. Is there a genetic component? I think this narrative around genetics and mental illness is simply getting more airtime due to the recent confirmations regarding the effectiveness of psychotropic medications.
What I would say is that the reason why EDS patients (which obviously IS a genetic issue) get ME/CFS is more about the physiological issues then the psychological aspects around the illness. This is where the biggest load comes from in my view. Then like with all people that develop ME/CFS, there usually is another stressor that finally ‘breaks the camel’s back’ so to say.
Nancy, my best advice is to let go of this whole discussion given that, that is all it is – a discussion, views, possibilities, thoughts. You can even forget about the whole concept of full recovery from ME/CFS if you need to. Instead, simply focus on the idea of a partial recovery, feeling a little bit better. This is often much easier for us to accept and get our head around. As you improve, seek a little more improvement and keep building from there.
Recovery and the meaning of recovery. When you find someone that “recovered” that is now a health coach or yoga teacher, I question “recovery”. I wanna hear about the people that went back to being a lawyer or a doctor or teacher. Not the ones that slowed down their lives and are now “recovered”. Dan- if you have any interviews like that please share!
And I’ll add, people that didn’t have six months of cfs. People that have been ill for at least a few years.
Yes, so many folk turn to health care after they recover – actually, A GREAT DEAL OF THEM! In fact, I often speak to professionals who end up retraining in nutrition or some kind of therapy – recovery really sparks that. So your comment is absolutely pertinent. I don’t know what % of people this describes, but I think it is pretty significant.
When people have been ill for years, returning to work is usually a bit of process because they often have to find a new profession given how long they have been out of the workforce or sometimes they are retired.
However, I have certainly seen people recover and go back to demanding jobs, including doctors, professors, therapists and also manual workers and high stress jobs. Sometimes this take a little while, so it’s sometimes a year or two after people have recovered.
The challenge is that such a personal recovery story interview and advertising illness doesn’t always look great on a resume – so I have actually had to remove some of these recovery stories and testimonials over time. Not to sound cliche, but one I can think off had literally worked as a yoga instructor and meditation teacher for like 5 years before becoming a police officer!
Anyhow, here are some of the recovery stories I have published – https://cfsunravelled.com/cfs-fibro-recovery-stories/
You might like to check out Katie and Jane (teachers), Luke (producer I think), Peter (woodworker), Mollie (therapist), Kari and Tim’s stories. Hope that helps.
Thanks Dan!
Part of recovery can be the realisation that your previous lifestyle and occupation choices were part of what was making you stressed and ill, so it would be crazy to want to go back to that. That’s what has happened to me. I used to think I wasn’t ‘recovered’ until I could go back to living my old life, until I realised the old life was a contributing factor.
I guess, but why can others go back to living your old life and not have CFS. Yes, maybe they will end up with a heart attack instead! But I look at true recovery as- I can go to Ibiza for a week and dance all night long for day after day and not have a fatigue episode that lasts 3-4 months. Yes, staying up all night dancing for a week isn’t healthy. Most people would probably get a cold/sickness for 1-2 weeks. I would be disabled for months. Recovery for me would be dancing a week strait, maybe even being a bit unhealthy and not have a severe relapse. But yes, I have changed my lifestyle these days and I’m doing ok and work.
It’s funny you use that as an example because going to Ibiza and festivals around the world was one of my recovery goals. Lol.
After 20 years of fibromyalgia that ended up with me being on disability and unable to work, I’m just delighted that I now live free from symptoms everyday. I can party occasionally but I know it will disrupt my body and mind for a few days and it’s just not worth doing that much. I have fallen in love with my simple, holistic, healthy lifestyle and have a deep gratitude for what I can do (work again, workout at the gym, go on long hikes) and accept that I have complex underlying health sensitivities that require me to live in a certain way. I’ve found peace in appreciating my body for what I does well and have let go of expectations to do it all. All things considered, I wouldn’t want to go back to my stressful corporate job and unhealthy party lifestyle even if I could.
Very pertinent comment.
The problem with the CFS model is there are many possible etiologies. Certainly, the neurological impacts this but also the immune and endocrine responses. The monster has to be tamed from every angle, obviously, this is why so many experts fail.
The body is quite the complex organism that relies on a multitude of metabolic pathways, many of these pathways interact with other pathways. The neurological, endocrine and immune systems really are one system due to their interaction. Finding the root cause could involve any one of these systems.
There appears to be epigenetic shifting that has occurred within the last few decades. Environmental toxins are a major cause of this shifting, but the medical system is silent about this. I speak on this from firsthand conversations from medical researchers.
I would like to see unbiased data from science that can prove that these agents do not cause problems. Many of my problems started to resolve with a complex detoxification system and better yet, polyphenol donations made another big difference. Of course, there are many other parts that I am not mentioning for the sake of brevity. I went from being bedridden for 20h per day to now almost functional.
Dear pbyr,
I wish Cort would invite you to write a blog on your environmental exposures and treatments that helped. In a post further down, I mention that 300,000 Gulf War veterans were exposed to chemicals that the VA and DOD has linked to their ME/CFS illnesses.
I served as a co-chair of a committee of the National Institute of Environmental Health Sciences for over 20 years. This is the institute that studies the links between toxic exposures and disease and/or disability.
How can CFS researchers totally ignore this great body of research?
Thanks Dan for the thoughtful reply. I will try to get a hold of Cort.
Correction: Thanks Betty for the reply!
I would add that I was severe CFS for 20 years.
Whenever I see posts about recovery stories I feel concerned. I know that recovery sounds more hopeful but I think that remission is much more honest. I know I am not alone in having ME when I was younger, believing I had recovered, and then many years later getting ME again. I feel that if I had known ME could come back, it would have changed my entire approach when I started getting sick again. This time my level of severity is worse and while that may have been the case anyway, I can’t help but wonder if the severity could have been lessened by aggressive rest when I began getting ill again, something I didn’t try because I never thought it might be ME again. I feel that it is a disservice to share “recovery” stories without acknowledging the reality that only way you know if it is truly a recovery story is if you live the rest of your life without a relapse. Remission stories, to me is much more accurate, and also gives people the information needed to better take care of themselves should a relapse occur.
So sorry to hear that you are unwell again.
Indeed if we can get sick in the first place, there is no reason why it can’t happen again.
I personally don’t like the word remission, as I feel it creates a negative expectation.
Of course your viewpoint is totally valid, however my preference differs.
I do think that understanding how we get ill and how we actually recover is key. People often think it’s one thing or another and actually their recovery has more factors involved. A deeper understanding can help create a more robust recovery.
Also, I feel it’s important to stop this distinction between ME, CFS, Fibromyalgia, POTS, MCS, IBS and so on. The problem this creates is that when people recover from one and then experience the other, they don’t realise they are in a relapse and think it’s something else that needs a totally different intervention. I have seen multiple people get caught out like that.
Thanks for sharing your viewpoint.
A laboratory of humans exists that could help unravel the cause and potential treatments of ME/CFS. This living laboratory consists of the nearly 300,000 Gulf War veterans who have an illness that mirrors ME/CFS. The symptoms of elevated herpes viruses, PEM can all be found in these veterans. Yet, it can’t be genetic since they are all from different backgrounds and all were uber-healthy volunteers when they went into the service.
An interesting aside is that GW illness has not been reported in veterans serving in the middle east after the first Gulf War.
What was different? The DOD and VA have attributed Gulf War Illness to chemical exposures. Which chemicals?
Why has no serious research been done on chemical exposures in the civilian population with ME/CFS? According to the CDC , we all carry hundreds of chemicals in our body fat. Theoretically, if these chemicals are released through stress, high temperatures, aerobic exercise, extreme weight loss, they can go into your blood stream where they suppress immunity allowing bacteria, fungi and bacteria to proliferate.
It seems that no one wants to “bell that cat”.
“bacteria, fungi and viruses in the herpes family”
For those of us who have a hard time processing large amounts of information, could someone tell me (or post a link to) the treatment that is being suggested by Dan.
Hi Caroline,
Sorry, I know it’s tough.
Here are some key messages :
1.) recovery is possible
2.) NOT some single treatment
3.) focussing on resolving ANS dysfunction
4.) personalising the recovery approach.
Education is key – which is hard when we are exhausted and having brainfog.
Unfortunately, there is no panacea cure, so a more complex personalised approach is required.
Hope that is helpful.
Hi Dan,
Thank you.
1. How does one “resolve ANS dysfunction”?
2. Who does one see for the “personalized approach”?
Thank you again. I Appreciate your time.
Hi Caroline
It’s really key that we become the champions of our recovery journey.
Recovery is not going about going to someone who will fix you.
So education is key which is why I wrote the book and created the program.
ANS dysfunction is resolved by reducing the triggering of the nervous system, changing the arousal of the nervous system and then retraining with a range of brain-training strategies.
The reason we speak of a personalised approach is the variation in how our nervous system is triggered.
So someone with diabetes is triggered differently then someone with POTS, which is different to someone experience IBS, which again is different to someone who also has a mental illness like anxiety or trauma.
Wo whilst most treatments don’t resolve symptoms, getting treatment for some things is key.
@Cort, could you clarify something for me. In the part 1 interview I could have sworn you mentioning that you tried Dan’s program but in part 2 you said you havn’t tried Dan’s program???? So far these interviews are resonating more and more with me.
Or I should say in your summary of part 2………you write that you have not tried Dan’s program.
I see sometimes people respond that when people recover, they didnt have CFS in the first place. I have issues with that narrative. I am very happy for everyone who was able to leqve this sickness behind. I was able to some extent on a specific SSRI ,ketosis, candida treated, eat sugar free. Drink 6 L of water. Never got fully rid of the PEM. My old days as a pro swimmer where long gone. I think my onset was EB and ignoring the signs and kept on going hard in the pool.
Thanks for bringing this up Robert.
Yes it’s sill to make a blanket statement like that – like some people are totally married to the idea that recovery is possible.
Glad you are doing better.
PS: that’s a lot of water – be careful folks not to deplete your minerals, excessive water drinking can be dangerous.
I bought the program. Yes I believe that there are symptom mitigation benefits from vagus nerve relief. I agree with that. But that’s extremely different than making a claim – countless recovery stories. I’ve been part of the global community for over 9 years; one person is recovered or long term remission from this. From 100 patients who buy the program – what is the statistical probability of recovery in Dan’s opinion? I think his claim is unsubstantiated w data and statistics
Hi Sharon,
Some programs out there make claims (I have heard up to 100% claimed success rates).
I do not wish to make claims about full or partial recovery rates because the program is not in a clinical setting and we don’t get good data. I often learn years later of people recovered with the program who I never had any contact with, people who relapsed, people whose progress plateaued and people who made no progress.
So ‘statistical probability’ and opinion are not a great mix.
Further, even if we had accurate data of X% partial and X% full, this does not translate into the recovery probability for an individual in my view unless you have a detailed way of differentiating what determines the difference in outcome likelihood. Even if you had this, I still don’t think it’s relevant, because then by understanding the difference, you would of course seek to close that gap no longer making that statistical probability relevant.
So that’s exactly what I hope people develop an understanding off – why did they get ill, why did they relapse, why did their recovery plateau. If we can understand these things, our ability to move forward is greatly enhanced.
I agree that any stressor, physical, mental, or emotional can impact my illness because they all require energy and producing and replacing energy reserves is where I have an issue. Listening to my body and pacing are basic foundations to staying functional. I think meeting people who have some success with recovery, or reading their stories, has given me hope that at least some degree of recovery is possible. It was 1997 when I was diagnosed with CFS and years before that with fibromyalgia. It’s been a long road, many ups and downs. However I am enjoying being semi-retired. I use multiple strategies to stay functional. I take recovery seriously but I am not serious about it, if that makes sense. I’m trying to say fear can be my enemy, but reality is my friend. Does that make sense?
Please , please, please…has anyone learnt how to sleep at night. I am now largely managing my pain during the day but at night when I am more vulnerable. The pain goes into overdrive. I am only getting a couple of hours broken sleep a night if that. Falling a sleep is also a problem. Many nights, no sleep at all. I really am losing it at the moment. Sleep problems for 40 years but decidedly worst with pain the last 10 or so
Sorry for my delayed response. After years of not getting sleep, especially from 11pm-2pm which is the time for restorative sleep (really I thought I’d die without this), I found a few things that have been a game changer. Check out CBI.org, they have an app which respects privacy. On apple app. 5 minutes and I’m knocked out. How can Dr’s not know about this?. I’m still trying to accept and adjust. Then, chlorella in powder form seems to make me sleepy. But I did the breathing exercises before this. Chlorella prompts vit D which prompts melatonin. Either the breathwork or supplement may be helpful. I know how isolating it is to sleep only when you’re exhausted in the daytime. I wish you the best..
I mean Conscious breathing institute. Not to be confused with CBI..opps!
Thank you so much for taking the time Elaine. Anyone’s wins are greatly appreciated.
Your welcome Nerida!
It is IBF-international breathwork foundation. My mistake again ..CBI is more a commercial site that sells gadgets..Sorry for any confusion!
I wanted to share this article I found. Dan it would be great if you could ask Health Rising to get permission somehow to publish this on this site. Please google and read, I’m not sure how to link it here. It’s called “ Self identity: a fundamental form of suffering in the chronically Ill” and is by Cathy Charmaz, out of Queen Mary University of London.
It is that one can really lose motivation to heal. I’ve had fibromyalgia so long that the abnormal is normal (although of course I’m aware too that it’s not also). I’m facing the lowering of my standards over the years of what accomplishment has meant to me. I realize that accomplishment has always brought me such feelings of joy. The other day I pushed myself to clean my apartment and felt this great satisfaction, then once again realize that sense of self satisfaction has been reduced to mundane activities. I need to raise the bar and look at a larger picture potential of healing to this end. Hearing others may improve or heal is so helpful. I’ve been stuck in survival mode for so long with fibromyalgia, but even with cooking (a basic need) I manage to make it creative and learn about different spices and interesting techniques or flavors. Tired of self care mode..I live alone and am reliant on self for these.
Thank you everyone for your thoughtful comments- have meant a lot to me..thanks Dan!
Hi Elaine,
Thanks for sharing that.
Totally makes sense to lose the motivation, because it seems too hard and frankly our efforts can only go unrewarded for so long before the brain says “what’s the point”.
I myself had certainly totally given up the idea of recovery – found that chasing it was simply to upsetting and draining and there was not enough positive feedback to bother.
Indeed hearing others’ experience is really helpful here, which is not something I ever had. That’s why I created the recovery stories which did not exist on the internet until I published the first one over a decade ago.
Maybe we need to shift the goal posts and simply focus on enjoying life a bit more and feeling a little bit better, and reset the goals from there. Aiming for full recovery can often feel too confronting.
Glad you were supported by the post – there have been a lot of fantastic comments and questions.
Dear Dan, You are such an inspiration for me. I agree with you so much. I find this whole interview as a video vademecum on how to recover from ME/CFS. Thank you for telling us about all these mechanisms rulling the CFS and recovery process.
And Cort, thank you for inviting Dan and asking him all the questions!
Greetings!
Thanks, Elfka!
I don’t agree fully with Dan’s comment about IBS and fibromyalgia. My IBS, and probably a part of my fibromyalgia was driven by 20 years of H.Pylori infection that doctors failed to pick up because they kept telling me my IBS was just part of fibro. My gut got destroyed in those years and is still not back to optimal functioning now.
What Dan says about a multi-layered approach is certainly what worked for me. For the best part of a decade everything I tried seemed to not work, but I realise now many of them made a little difference that was hard to notice amongst all of the intense symptoms. Over the years, one by one, I figured out my triggers, weaknesses, driving factors and compounding factors and eventually started to feel a lot better. I’ve just had nearly 12 months symptom free but some recent stress has resulted in a minor flare. It takes a lot for me to remain symptom free because there’s obviously root causes I haven’t yet fully addressed. I prioritise optimising my health everyday and slowly I chip away at root causes.