“Stop Trying So Hard to Recover!” Dan Neuffer
Dan Neuffer has been investigating ME/CFS and FM recovery stories longer than anyone. In our 3-part series of interviews so far, Dan has said that he’s now seen so many recovery stories that he’s stopped counting them, that he’s seen many bedbound people recover, and if not completely, at least to 50-70%, that he believes everyone can recover, and in this last part, his best advice is to stop trying so hard to recover (!).
The last part of our long interview was the most interesting for me. At this point, the interview was verging on two hours and by the end of it, if you couldn’t tell in the beginning who probably had ME/CFS and who didn’t (and you probably could), as the day turned into night in my van and the mysterious red band on my check deepened in color – I was clearly fading. Dan threw so many intriguing ideas my way that I left the interview exhausted but with a lot to think about.
The Dan Neuffer Interview Pt. 4
Watching the video is highly recommended, as you can get a sense of who Dan is from it. There’s also a written synopsis with added reflections from me below.
- Dan shares a key concept for recovery from Chronic Illness 00:00:17
- Dan talks about patterns of symptom improvements in recovery 00:03:01
- I ask about subgroups that recover more quickly 00:04:55
- I raise the issue of genetics and predispositions 00:11:22
- Dan talks about mental health impact on recovery 00:16:46
- Dan’s surprising answer to Cort asking about people’s struggles with recovery with severe illness 00:19:44
- The dichotomy of the illness & need for distinctions 00:24:12
Link to download the first 10 chapters of Dan Neuffer’s book, CFS Unravelled, for free: https://cfsunravelled.com/hr/
Link to Dan Neuffer’s YouTube Channel: @cfsunravelled1
The Gist
- Dan Neuffer has been tracking ME/CFS and fibromyalgia recoveries longer than anyone. In the 4th and last part of my interview with him, Dan stated that miraculously rapid cures – while they do occur – are the exception and not the rule, in his experience. Recovering from ME/CFS/FM is more a matter of continuing to accumulate small gains over time. Small gains, though, can be easily missed in a disease that produces so many problems.
- People who have quicker recoveries tend to have done things in the past that helped them. Dan remembered one person with Buddhist training who was able to calmly use the practices in his course and recover quickly despite being quite ill. That brought up Dan Moricoli’s story of recovery from being severely ill. Besides his yoga practices and disciplined pacing, Dan accepted everything the illness brought to him.
- Dan’s experience is that people who recovered solely using mind/body approaches tend to be on shakier ground because they often haven’t resolved what caused them to become unwell in the first place.
- Even some people who have never been well – have been sick since childhood – have achieved health.
- One of the big takeaways from this last part of the interview was Dan’s advice to stop trying so hard to recover. Do not aim for full health right now – it just increases your stress. You don’t have the capacity to fully recover right now anyway – but you do have the capacity to feel a bit better – and that’s the key.
- Instead, focus on these questions: What can you do to make life a little better? What can you do to reduce your symptoms a little bit? What can you do to feel a little happier and appreciate and value any gains that you’ve made?
- When you feel a bit better – don’t launch yourself into life – back to the many things you think you should do.
- invest whatever gains in wellness you’ve gotten into more wellness – like taking on a hobby or doing something you love. Wherever you are – whether you’re still bedbound or at 50% or 70%, invest whatever gains you’ve gotten back into more wellness.
- While pacing can be helpful, it should not be the sole focus, and he believes that solely relying on pacing can be harmful as it can sensitize our systems (presumably because they are not getting the stimulation they need?).
- Instead, Dan’s focus is on finding ways to stimulate the nervous system just enough – but not too much. The goal is to retrain the nervous system so that it doesn’t respond so dramatically to stimuli. If you remain cloistered, you can’t do that and you’ll be stuck.
- It’s not what we do to recover – it’s how we do it – and that’s probably the biggest message Dan wanted to give to people. His parting thoughts were: “If you can aim for small incremental gains without the pressure of full recovery, and invest your wellness in something that makes you happier and not push yourself, I think that would really serve you”.
- Watch the interview and get access to the first part of Dan’s book and his website and YouTube channel at the top of the blog.
The Slow, Sometimes Hard-to-See, Progress in the Beginning
For Dan, as a patient, it was always all or nothing; it’s got to be fixed right now! But as Dan will note later in the talk, miraculously rapid cures – while they do occur – are the exception, in his experience. Recovering from ME/CFS or similar diseases is more a matter of continuing to accumulate small gains over time. Small gains, though, can be hard to see.
Rapid miracle cures are the exception to the rule. Most cures occur slowly over time.
For one, there’s the problem of “cognitive distortion”. Small gains are harder to chart. As some symptoms disappear, it’s not hard to forget to chalk up that gain – perhaps because of all the others that are left. Dan said when he asks people, “how are you doing?”, he sometimes hears “mostly the same” yet when questioned more precisely (“what about this symptom”), they’ve forgotten that they had it.
I remember Dr. Peterson referring to patients not being fully aware of the progress they’re making. I don’t think this is ME/CFS specific, though. I think it’s pretty much part of the human condition. As human beings, we tend to be wholly focused on what’s wrong, and there’s a lot “wrong”, or at least a lot of what we’d rather not have, that’s there.
Plus, Dan noted that core symptoms like fatigue take longer to get impacted, aren’t reduced, then they tend to overwhelm progress in the other systems, while sensitivities to things like lights, smells, and emotions often tend to disappear first.
The Quicker Recoveries
One person who was attacked while in bed developed PTSD and fibromyalgia shortly afterward. Despite being severely disabled, she’d made complete peace with the illness. She still hoped to recover but was OK with being ill and Dan believes this changed her level of stress and helped her proceed.
She was willing to try new things – like changing her expectations in the midst of feeling dizzy – something that Dan said sounded rather insane and, on the face of it, made no sense – but which she was able to do and eventually retrain her nervous system. She’d done Buddhist meditation for decades and when it came time to embrace new practices, she did so calmly and coolly. She ended up having a very rapid recovery.
Again, that reminded me of Dan Moricoli’s story. Dan had studied Buddhism and other practices before becoming severely ill where he described being in a coma-like state for months. Stressful physical exertions could cause his arms to flop around – sometimes hitting him in the face and his speech would slur.
Dan Moricoli was impaired to the extent that his future looked bleak indeed, yet he fully recovered using disciplined pacing, yoga breathing techniques, and a very slow ramp-up of exercise. One thing he said struck me – he said he accepted the illness from the beginning. He never fought it (at least not for long), he was never a victim of it (at least not for long), he didn’t ruminate about what he’d lost (at least not for long) – he was able to just accept it.
My jaw dropped at this almost superhuman level of acceptance, but I imagine his prior work in these areas and his ability to accept things as they were probably helped.
The Miracle Cure Recoveries
Every now and then, you hear about people who go from being ill for 30 years to hiking in the mountains in 3 months. Dan was initially skeptical of these reports and he would drill people to make sure they had this disease.
He’s concluded that people who get well quickly tend to have resolved what led to them becoming unwell. Dan’s experience is that people who recovered solely using mind/body approaches tend to be on shakier ground because they often haven’t resolved what caused them to become unwell in the first place.
Recovery After Never Being Well
The past is not necessarily prologue, though, and our destinies are not fixed. Dan then said something that helped explain why he thinks all of us can become well. He said he’s met people who have been sick since childhood who have recovered. Dan would poke back at them.
“How do you know that you’ve recovered?”
“I’ve never felt so well before.”
“How do you know – when you’ve never felt well before?”
Often, Dan says they are not recovered – not fully. They don’t have a frame of reference for health. They’re 60 or 70% recovered. They’re just so much better that they think they’re back to normal health, but they’re not.
In the past, Dan has referred to more normal cases of ME/CFS – including himself – in the same way. In the same way that we sometimes don’t recognize what progress we’re making, we also sometimes think we’re “recovered” when we’re not – we have more health to go.
A PTSD-Like Illness?
If this is an autonomic nervous system disease, then you’re in a difficult situation, as almost anything can trigger a stress response. I don’t know what PTSD is, but I said it sounds like something like ME/CFS/FM could set you up for a PTSD-like response to potentially everything.
Dan’s view is that PTSD and ME/CFS/FM are similar disorders; it’s just that PTSD has a psychological component that ME/CFS doesn’t have. Regardless, it’s the same parts of the brain that are going bananas.
Stop Trying So Hard to Recover!
In Dan’s experience, small gains that get put into more wellness are the best approach in ME/CFS and FM.
What about people who are in such a fragile state that they’re afraid to try anything? They’ve tried things in the past and the consequences have not been good, or have even been horrific and they’re afraid to do anything at that point.
Without having any negative (or positive responses) to just about anything, I’m in that camp to some extent. My body seems so touchy and variable that I’ve been leery of exposing it to pharmaceutical drugs. I’ve gotten over that recently and am trying a bunch of things (guanfacine, Doxepin, modafinil, montekulast, nicotine patch) and it’s mostly going fine, but I tend to delay, want my body to be in a good state before I try something. That meant some things have sat on my shelf for months before I gave them a try.
Dan’s advice was startling: stop trying so hard to recover. Take away the pressure of getting to a full recovery. Do not aim for full health – it just increases your stress. You don’t have the capacity to fully recover right now anyway – but you do have the capacity to feel a bit better – and that’s the key.
- What can you do to make life a little better?
- What can you do to reduce your symptoms a little bit?
- What can you do to feel a little happier and appreciate and value those gains?
This may sound like a strange strategy, but it fits with Dan’s notion of ME/CFS being an autonomic nervous system, or a broken stress response disorder. Helping to heal the ANS – which is firmly entrenched in a fight/flight response – is one way people get out of this disorder.
When you feel a bit better – don’t launch yourself into life, back to the many things you think you should do. Don’t go “skateboarding on the roof again” with your health. Dan said we always complain about how everyone doesn’t understand this illness – how it doesn’t get the respect it deserves – but we still don’t give it the respect it deserves either. We are the worst. Dan said he’s seen hundreds of people try to throw themselves back into the thick of things when they start to recover and then fall back.
Instead of doing that, invest whatever gains in wellness you’ve gotten into more wellness – like taking on a hobby or doing something you love. Wherever you are – whether you’re still bedbound, or at 50% or 70%, invest whatever gains you’ve gotten back into more wellness.
This is where he believes ME/CFS becomes a spiritual journal. There’s nothing you have to do. It’s all a fabrication of your mind.
I mentioned Fred Friedberg’s study which found that improvement was associated with having more uplifts. The patients weren’t well, but those that tended to experience some improvement had more uplifting experiences. That same improvement didn’t happen more with people who were pacing more. Pacing may have helped them not crash as much, but it didn’t, by itself, necessarily result in improvement – something else was needed. Dan said that resonates with everything he’s experienced and called having more uplifts “an essential part of our recovery”.
Pacing Not the Entire Answer
Finding the right balance between too little and too much stimulation, and retraining the brain not to over-react to stimulation, is important.
Warning that “I am full of mixed messages”, Dan noted that people start pacing and stop having so many flareups but then said, “Pacing is terrible(!)”, adding that by doing so, you may be sensitizing your nervous system – but also that not pacing is terrible too – by doing too much, you keep over-activating your nervous system.
It’s the focus that counts. I had the feeling that, for Dan, pacing is fine and good, but that while it’s probably a part of many people’s recovery, in Dan’s experience, our focus should be on finding a way to stimulate – but not overstimulate – a very, very twitchy nervous system/body. We need to retrain the brain/nervous system how to respond to the stimuli. If you remain cloistered and don’t give it stimuli – how can you retrain it?
Most people do too much and too little at the same time. They don’t give themselves the right kind of stimulus to retrain the nervous system. He didn’t argue with people’s experience that graded exercise therapy made them sicker, yet he knows many people who employed graded exercise therapy – just not in the linear, rigid way we’ve seen it done – and were able to recover.
It’s not what we do to recover – it’s how we do it – and that’s probably the biggest message Dan wanted to provide. He said:
“If you can, aim for small incremental gains without the pressure of full recovery, and invest your wellness in something that makes you happier and not push yourself, I think that would really serve you.”
The Recovery Series Interviews with Dan Neuffer
- Dan Neuffer on Recovery From ME/CFS and Fibromyalgia: Pt. I – Dan’s Illness Experience
- The Dan Neuffer on Recovery From ME/CFS and Fibromyalgia Pt. II – Broad Themes and Why He’s Stopped Counting Recovery Stories
- Dan Neuffer on Recovery From ME/CFS and FM Pt. III – Who Can Recover?
In spite of pacing I am gradually getting worse. About 2 years ago I could force myself to work a full week and then rest for 3 days. I slowly became more and more bedbound, eventually losing my job because my disability accommodation made an error for which I was blamed (yes I know) and now I get out of bed for only 2 hours at a time. Sitting is OK, standing not at all. But I will relax enough to say I will keep getting gently up for a couple of hours and try to not lose that. Anyone else progressive?
I’m not bedbound but I have worsened noticeably . And several years ago I did begin a hobby as he suggests, that truly gives me lots of joy. I participate in it to whatever extent I can daily. It’s art, so what I mean is if I can’t make art that day, I view other’s work and some recorded tutorials.
I have found myself wondering whether it’s my other conditions, my Covid vaccinations or a combination of everything that has made me worse. Then there’s age, too. I’ve been ill nearly 18 years and am in my sixties.
Sometimes I think it may be the medicines I’m on that are now causing me to worsen-such as high blood pressure medications. (I swear another medicine CAUSED the high blood oressure!) it’s all so complicated.
Hi Nancy, I also had to take something for high blood pressure: Preterax (Europe) which didn’t agree with me. I found myself forgetting so much that it became problematic. Stopped taking it and switched to an olive leaf supplement. Side effects of the Preterax gone in a week! Kind regards.
Hello, Maria. It’s awful what some of these meds do! One of mine caused forgetfulness and I was worried-told my doctor I thought it was a med causing it but she didn’t agree and scheduled a brain MRI. When that turned out fine, I went off the med on my own and discovered I’d been right.
Hi Ruth,
So sorry to hear that – your experience is not uncommon.
Pacing can be helpful, even essential, but it can also be unhelpful and lead to further deterioration.
The problem is that any singular strategy only has so much value. This makes sense, because if any singular strategy worked consistently, we would all know about it and tout that as a cure!
The key is widen your approach for recovery, and as you are able, seek to extend your activity again. But don’t do this with the GET mindset of just increasing a little bit each day – as that often leads to crashes. Instead, we need a more flexible approaches that respects how we are doing.
It’s annoying how complicated it gets. But if you seek to add just one strategy that supports you, then as you feel a little better you can add another. Keep fine-tuning, keep adjusting and exploring.
Hope things are a little better for you soon.
I too have experienced a worsening of my symptoms the past two years. I was housebound but now bed bound. I’m able to get up for about an hour before I have to lay back down.
Yes seems to be progressive. I’ve recovered’ several times only to be knocked back years later and was doing quite until DWP reassessment to keep roof over always sets me back a year so back to square one not progressing. Add peri menopause on and I’ve declined in the last year. Also long covid effect
Yes I have been very progressive. Like you “when I can, I do”. I listen to my body, I have God given skills that enable me to help others, which gives me tremendous enjoyment! I can sit in bed or in my recliner and knit or crochet. I knit prosthetics for women who have survived breast cancer, and I have knit many scarves for the needy in my area. Some days my eyes act up, or my arms are too weak and that is frustrating, but so far it eventually passes. Most days I can’t stand for long as my muscles tense and become very weak from straining to remain upright, due to the dizziness I have and I need help from my most supportive husband to return to bed. The list seems endless and I won’t go on as I know everyone has conditions too numerous to mention.
You are not alone. Most mornings I am able to get out of bed to continue the ritual o morning coffee with my husband. Keep up the good fight, just don’t overdo it.
PS – I am very temperature sensitive
I do like most of the things you have on health rising. But this is bs!
It’s a crazy illness with many complicated symptoms, that may or may not go away. What pulls you out of it? No body knows!
This guy went into remission. I did for 10 glorious years . So It’s not unheard of. Good for him! I hope it does not flare back up for him, because it sucks the life out of you when it comes screaming back.
Sorry to hear that Melissa. I think it some ways it can be harder to get better and then get sucked back than to just maintain where you are at. I don’t know – I’ve never really improved (lol). This is not Dan’s story, however, this comes from his experience working with people with ME/CFS and interviewing people who have recovered.
I get that , but it really is an overly simplistic story about a very complicated disease.
Now if in 20 years the people he worked with stay M.E free? Then that’s something.
Sorry to sound so shitty.
Hey – anyone who has to deal with this illness for any time, is supposed to sounds shitty – don’t worry, I consider myself the most terrible cranky person I know in the face of chronic illness – many of my family will sadly corroborate this 😬
Glad you found it simplistic – I suppose my view is that it is far from simplistic which is why people struggle to recover.
Actually, I have come across numerous people who have stayed well for decades after recovery (obviously not through my help – I have only been doing this for 10 years). I have seen 20 and 30 year recoveries. Sadly, I have also seen relapses after such long-term recoveries. But as per my comment above, whilst nobody is bullet proof, recoveries can be robust. There are certainly key factors that seem to influence the level of robustness, I don’t think it’s a mystery in the vast majority of cases.
I would say that after years with this I would be happy with five years or even 1! Unfortunately, nobody has been following anyone with this disease for even five years let alone 20 years – so that is for the future.
Yes, it is very complicated and there is no one way to recover – that is very clear – the 70 plus recovery stories on Health Rising – almost all of them different – makes that even clearer.
Kaufman and Ruhoy have been doing weekly podcasts on diagnosing and treating ME/CFS for over a year – so, yes it is very complex.
Dan, though, has been immersed in recovery stories for 10 years which is why I interviewed him and why I wanted to get his take on recovery. His program presents one way of many ways of approaching it – and because this is an interview it can’t begin, I am sure, (I haven’t done his course), to cover everything in his course.
I’m going to have to agree with you, Melissa. I’ve dealt with this horror for at least 25 years now, and this theory of getting better just doesn’t sound right to me. Nor does it match my particular experience. The misery is pretty much constant no matter what you try, or what you do or don’t do.
Hmmm – what about this is BS Melissa?
I don’t agree that ‘nobody knows’. If you listen to people who share their recovery stories (since I started these 10 years ago, 100s are available now!) you will see that people do know. The issue is that many of the things are different, although many are the same. But certainly it’s not some singular panacea cure path.
It sounds like you relapsed – so sorry to hear that. Unfortunately that happens for many people (including people that I have helped recover). The key is understanding why we get sick in the first place and WHY we relapse – this is essential to building a robust recovery.
Hi Dan, how do we find out why this happened? I’ve been getting a lot better from Gupta & CFS recovery along with pacing. It’s so great to have more life in my life. I hope the progress will keep going.
Great to hear you are progressing – keep going.
Well, that’s a complicated question and why we have so much education on the pathogenesis of the illness in the program.
In summary, it’s about understanding what your triggers were and addressing those. People often identify stressors, but often not all of them. The stressors they identify, they often think that those things are the cause (eg. accident or viral infection or immunisation or whatever). However, it is usually the combination of all these things. But more importantly, it is not solely the stressor, but the response to the stressor that is the biggest issue in my experience. That is the differentiating factor between people that get ill and those that don’t.
We tend to think that our capacity to cope with a lot is a good thing, but I find it’s the opposite. Most of the people I meet, are simply too tough. They endure too much. Other ‘weaker’ people tend to withdraw from too much stress and recover normally.
Hope that makes sense.
Hi Dan. you sound like the kind of guy that is super resilient and lives life as an optimist! I’ve known quite a few like you! They are my heroes! So why am I not like them (close blood relatives)? Maybe the folks you’ve interviewed have the answers!! For myself, I could say I’ve done so many things, big and little, to allow myself to deal with my ‘infirmities’!! I’d be dead now if I hadn’t! But recovery is not a word I would use for myself, unfortunately! My brother and I had polio in 1944! It was NOT caused by stress!! Later we developed post polio syndrome. (its like ME in many ways). After polio his life was truly remarkable as a ‘handicapped’ person. (He would never have used that term to describe himself.). So, Horrah for those that have recovered! They have ‘seen the light’!
Hi Louise,
Well, that’s kind of you to say. To be frank, I often haven’t felt resilient at all, nor have I been an optimist – perhaps that’s why I have such interest in these subjects.
Sorry to hear about the Polio and post polio syndrome – I think many of us these days don’t realise how lucky we are not to have to face such things.
Thanks for your kind comment.
I agree with you. I have been progressive as in relapsing/remitting. I had years of feeling so normal that I thought I was healed. But it returned for good and has become progressively worse. Some days I need help going 10 feet rom the bed to the bathroom. So weak and dizzy. That has on occasion morphed into seizure-like episodes. None of it ever goes away permanently. It returns worse than before.
Good luck and many prayers
I’ve found these Dan interviews really useful, thank you for running them and Dan thank you for being interviewed. I’m sorry so many people are being so negative about it all
Thanks for your positive comment Ricky
Really glad you feel supported by the interview – I thought Cort did a really great job – I appreciate his curiosity and thoughtful questions.
Thank you once again, Cort. This is really interesting.
I noticed that you mentioned montelukast, and wanted to mention that a doctor of mine pointed out that there is now a black box warning on it. He gave me a copy of a (summary of?) the alert, which said that it can cause – in a very small portion of the population- psychological symptoms ranging across the whole spectrum of depression, anxiety, psychosis, etc. Apparently it just came out. (I take montelukast for bronchiectasis, and have for years, and haven’t suffered any of those side effects).
I one who needed that black box warning before it came out. 48 hours after the first dose I was suicidal. Fortunately I recognized the signs of depression and hopelessness. And put 2 & 2 together before taking the third dose. I did a test 2 weeks later and took one dose. Sure enough the next day I felt really down. It well could be a genetic thing. People Really need to be careful with any prescription meds!
I guess you’ve proved the new warning is good to heed. I’m really sorry you had that experience and congratulations on figuring it out yourself. Hopefully the black box warning will put others on alert before they have the experience you did.
Apparently it is a very small population. Perhaps it is genetic. Others have brought up the genetic testing one can have done for whether one is genetically well-disposed or not to certain psychiatric meds. But montelukast is an asthma drug – I can’t imagine it would have been included in those profiles.
It will be so good when there are finally genetic tests for all meds – or at least, all common meds.
Wow- I had no idea! Thanks.
I became ill over 40 years ago. I’m 62 now. There were viral reasons but all my life I’ve suffered from trauma from young child and different kinds but severe until 57. I have never made any progress. Tried and taken everything.
Initially whilst listening to your video I felt angry/hurt as if oh here we go ME isn’t being believed etc But I am constantly and chronically stressed. I have cPTSD, panic disorder, dissociative disorder etc but I’ve had so much varied therapy which hasn’t worked. I don’t understand how I can sort out my ANS, CNS and if I did would I get some better health? I have a supportive husband now but am even more ill and bedbound 90% time. Every little thing I do eg wash, an appointment, concentrate, try to do some washing just one thing and I crash for a week and repeat. I never could pace just existing is hard enough. But I find my interest has begun. Last week I came to conclusion that I was done, still here because someone on a site said don’t give in, try low dose naltrexone – that’s the one thing I’ve not tried and am going to try soon.
Can anyone help me understand this video and what it’s telling me to do?
I highly recommend anyone with PTSD (or un-diagnosed trauma of any kind) try and find an EMDR practitioner. Google EMDR.com. It is a very easy, relatively non- stressful way to heal from PTSD and trauma. The very top right corner of the webpage has a clinician finder directory. The website explains everything. Healing from the trauma from your childhood all the way to the present will go a long way towards helping you recover!
Thank you….I see that there is a EMDR right here in my city.im going to give it a shot!
Sally, I confess I found it confusing, especially being told that both pacing and non-pacing are bad. If there is something in between I would have liked it to have been explained more clearly. See also my comment below. With your multiple conditions (I cannot give specific treatment advice) note that mainstream psychology and psychiatry now both embrace the Buddhist concept of acceptance and I have to remind myself of this. All the best.
Well I get it Chris – it is confusing.
The subtleties are hard to grasp, even with a broader overview of what is going on – let alone without it. I will respond to your other comment.
Sorry to hear about your difficulties – yes, it sure is tough isn’t it.
You may get a better context by watching the full interview – check out parts 1, 2 and 3.
No quick fixes, it’s a process of course.
I’m similar to you. 34 years of ME/CFS and I’m 55 now. I just signed up for these videos and I’m only at the beginning though. So what he is saying is that our autonomic nervous system is the root of all the CFS problem, and resetting it Will cause our house to gradually return. It takes six weeks to get through the program. There is a daily video. What I like about it so far is that there is no stress and no pressure. He keeps everything very simple and very positive and encouraging. He’s right when he says all of us have “tried everything “. But we aren’t getting at the root of the problem and once we fix this and know how to fix it then in the future and he relapse, maybe we can prevent it from happening or keep it extremely short. That’s the whole reason why I’m doing it because not only do I want to get better but I want to make sure I never relapse like I am right now again.
Root cause must be squeezed brain vines.
Why?
Just one of the body safe response.
For me with this theory you can explain every CFS/ME smyphton.
Yeah thanks Dan. I’ve been doing this for the last 30 years. Still sick. In fact getting noticeably sicker as I age. Probably due to an aging immune system…..
Sorry to hear that Wayne.
Hope you manage to make the most of everyday as best as you can and that you enjoy a little progress soon.
And this is why we need a definitive test – a biomarker. To screen out the numerous conditions that appear as ME/CFS.
Thank you both for a stimulating discussion. I am a retired psychiatrist who has had mild to moderate CFS for 40 years. You both raised similarities between CFS and PTSD, while acknowledging you did not know much about PTSD. I have published a textbook on PTSD and would have seen several hundred patients with it. I also have seen (as well as suffered) over 100 patients with CFS. I see little or no similarities between the two conditions and the core treatments of the two are almost polar opposites. The core treatment of PTSD (easier said than done) is carefully confronting the feared/avoided behaviours. By analogy with CFS this would be akin to saying get up and go running each day until you are really fit. I wonder about the wisdom of suggesting the two are similar.
Thank you for your thoughtful question.
Yes, well hopefully you see why PTSD is a predisposing factor now if you watched the whole interview. (including the first 3 parts)
The reason why I conflate these conditions is because the same parts of the brain are involved.
However, there are of course distinct difference from both a psychological and physiological point of view. But then again, we could say that about Fibromyalgia and POTS, yet I am still saying they are the same condition – just different expressions of symptoms.
So indeed aspects of recovery are the same as you suggest. The problem with simply confronting the feared/avoided behaviours in CFS is that CFS is not a psychological condition like PTSD, it is a neurological condition with real physiological problems.
So we all know, no matter what you do or think, if you push too much then you will experience PEM. That’s why we sometimes see people shockingly trigger themselves for years because they don’t even make the connection to physical activity to their symptoms (seems surprising, but it happens). These folk of course don’t actually have ANY fear/avoided behaviours around physical activity!
It’s important to recognise that there are many triggers in this illness. The brain-training we do which can include mental aspects also (similar to what you suggest for PTSD) are then applied to a multitude of triggers. But of course, not ALL triggers, because that’s not possible (we don’t even know some triggers because these happen on a physiological level that we may have no awareness of – for example blood sugar variation).
I am hoping that is helpful. The illness is complicated because the ANS is so central to so many functions and stimuli. Trying to focus things too much or oversimplifying things leaves us with too many holes in our understanding. But over complicating or suggesting it’s all a mystery is also totally unhelpful.
It’s also important to recognise that we don’t necessarily need to retrain all triggers – because as ANS function normalises, these trigger responses settle down across the board. Having said that, this is difficult to achieve if very significant triggers are left totally unaddressed, like for example someone who has PTSD or an anxiety disorder, or someone who has unmanaged diabetes or severe hypothyroidism.
Thanks, Dan. I think I have only seen two parts so forgive me if I’ve overlooked something important. I agree that similar parts of the brain may be involved in the two conditions – after all we only have one brain. However, the essence of PTSD is that it is a disorder of extreme fear/overarousal, whereas CFS (correct me if I am wrong) is more a disorder of energy depletion/underarousal. Someone with a traumatic early childhood may be predisposed to later PTSD, with subsequent traumatic experiences. Those same childhood experiences (I am stepping beyond my area of expertise) perhaps might predispose to later energy depletion (eg following a virus) by way of an exhausted ANS due to earl trauma. If this logic is correct (it may not be) I have difficulty accepting that a disorder of overarousal is similar to one of underarousal, but have no problem accepting that the same brain arousal system may be involved in both. I would be interested in your thoughts on this.
Hi Chris
Thank you for your thoughtful response and question.
So this is the whole problem with the medical model of the world – it is very unusual.
I don’t think I have to even compare medicine to hard science like physics or chemistry, but even if I compare it to the logical methodical approach of a plumber there is a stark difference.
The difference is that outside of medicine, people tend to look at what is causing the problem as opposed to the resulting problem. So if I call the plumber because the floors are wet, he doesn’t seek to install a floor drying system, he seeks to fix the leaking pipe.
In medicine, when there are symptoms, the aim is to treat symptoms (ie. the wet floor).
So I would say this illness is NOT a disorder of energy depletion. There are plenty of fibromyalgia folk that don’t have energy depletion. Of course medicine will often suggest that this is a different disorders.
Instead a preferable approach is to look at what is the root mechanism leading to all the different symptoms (the broken pipe), rather then whether there is a wet carpet issue (eg. CFS), rotten timber-work issue (eg. POTS) or electrical problem (eg. Fibro) etc etc.
So such childhood experience are not predisposing because they predispose to ‘energy depletion’, but they are predisposing because they predispose to nervous system dysfunction – specifically ANS dysfunction. The ensuing symptoms and dysfunctions result from this nervous system dysfunction.
Hope that resonates with you.
Dan,
Thanks for your discussion.
Wow, this one is hard to pass by. It is a whole lot of wild speculations without any evidence. Saying PTSD is similar to MECFS because it is a predisposing factor is like saying being women is similar to MECFS. And nobody, including you, knows which part of brain, or any part of brain for that matter, is involved with MECFS. You may speak of them as your beliefs, but you can’t pass them as facts.
Have you really met any MECFS patient who failed to associate the physical exertion to the crash, and therefore trigger PEM for years? I haven’t. It’s so unmistakable that it is usually the first thing anybody with MECFS notices. Some people keep triggering PEM not because they are not aware of post-exertional nature of PEM, but because they are not disciplined enough to pace themselves when they feel better.
Meanwhile, saying solely focusing on pacing can be harmful is plain irresponsible unless you have an RCT’ed evidence. While pacing may or may not help you improve, it is the only tool that has been proven to prevent PEM, and therefore prevent getting worse over time than otherwise.
Well said TK. I could have written this myself. Absolute nonsense.
There’s no hard causal evidence, no treatment/cure, no experts, no improvement, no recovery.
I am not depressed…ever…, never feel negative. I have hobbies I try to do a little at a time but for 12 years I have been bed based and felt ill 24/7. Not well enough for a trip out; not well enough for a wheelchair push round the park; not well enough for a coffee out; not well enough for more than half an hour TV; not well enough for appointments on and on and on. I do these things very occasionally to make some memories, otherwise I’d go stark staring mad.
But none of it is worth the bother. My life is limited and pointless and speculative posts like this just irritate the life out of me.
Jeez – these assertions!
Saying PTSD is similar to MECFS because it is a predisposing factor is like saying being women is similar to MECFS.
Who said PTSD is a predisposing factor? I didn’t hear Dan say that. He said the same part of the brain is involved. I don’t know which parts of the brain are involved in PTSD but that’s pretty easy to check. (I cnecked prefrontal cortex – limbic system – so yes)
And nobody, including you, knows which part of brain, or any part of brain for that matter, is involved with MECFS.
!!! What about all brain imaging studies? Some part of the brain are commonly found to be abnormal in ME/CFS and they include the brainstem, prefrontal cortex, limbic system, basal ganglia, and motor cortex have all popped up in brain imaging studies. The nice thing is that you can piece all these findings together to make sense.
https://pubmed.ncbi.nlm.nih.gov/38016575/
https://pubmed.ncbi.nlm.nih.gov/34975729/
You need RCT based evidence before you try something with ME/CFS? Good luck with that if you want to get better. Actually some studies have been done
Amygdala and Insula Retraining (AIR) Significantly Reduces Fatigue and Increases Energy in People with Long COVID.Toussaint LL, Bratty AJ.
https://pubmed.ncbi.nlm.nih.gov/37492483/
Neuroplasticity Intervention, Amygdala and Insula Retraining (AIR), Significantly Improves Overall Health and Functioning Across Various Chronic Conditions.
Bratty AJ.
https://pubmed.ncbi.nlm.nih.gov/38404605/
I discard the idea that we should ignore anything that hasn’t been scientifically tested as being scientifically invalid. If we are really being scientific and objective shouldn’t we include everything in our data set? Should we ignore the now hundreds of recovery stories on the internet from people who have recovered or greatly improved using these techniques?
With regard to this: “saying solely focusing on pacing can be harmful is plain irresponsible” – Dan is not saying no to pacing – he’s saying continue to do the pacing – and try and add things in – but continue to pace. So long as you pace – don’t overexert yourself – don’t cause your symptoms to flare – you should be safe. I don’t have any problem with that.
I find it strange TK that you who recovered through traveling are so quick to close the door on alternative approaches.
Yeah, there are tons of papers. None of them has been replicated though. I’m hoping that someone will jump on Monje study on microglial inflammation and replicate it. It’s COVID related, so it got more coverage and attention than, say, Nakatomi paper or Younger studies. Or maybe the rapamycin pilot trial will turn up something. Neuroplasticity etc. are something bordering FND, but still interesting idea to think about.
And no, I’m not closing anything. I absolutely have no problem with anecdotes, or even alternative therapies. In fact, recovery anecdotes are what I enjoy the most on your blog. I’m just objecting to presenting unproven stuff as facts.
I’m positive about the effect of living on the road on me, but it could be something specific to me or recovery could be just a coincidence. You also live in your van, for example, and you haven’t recovered. So, I don’t mind talking about it as an anecdote, but I certainly wouldn’t pass it as a cure or a therapy that is applicable to others. It’s really up to the readers to read about it and make whatever of it.
Well, my skiing season came to an end on this perfect day with blue sky and deep snow. I dive-bombed at Sierra-at-Tahoe all day long with the incredible feeling of aliveness and freedom. I hope we’ll find a solution soon so that everybody would get the freedom they deserve and live life once again, like I am now.
Conflict of interest statement
Conflicts of Interest Alexandra J. Bratty is the CEO of AB Research Consulting, which provides consulting services to The Gupta Program, the commercial version of the Amygdala and Insula Retraining (AIR) intervention. Her company was compensated for this work by independent donors.
I attended a Support Group recently and the Facilitator pressured me to let go of a past trauma that he felt was weighing me down, contributing to my fatigue. (He was using CBT.)
I felt resentful. I find that I do better if I don’t pressure myself to move on completely. Instead, I seem to let go in small pulses. So I appreciate this article. It seems realistic to me.
Well that’s an odd notion – pressure to let go.
I am sure you don’t need any pressure to let, why would you want to hold on – hehe.
What you need of course is support and help and to do it in a way that you can cope with – so pacing ourselves is key here.
CBT of course is helpful, but limited for trauma – so we need to more rounded set of therapies in my experience.
A good therapist will allow you to go through the process as you are ready.
Speaking of which, I have often found that dealing with trauma really accelerates recovery – however, people generally need to be well enough to be able to deal with that. It’s also important that you pace yourself with the therapy, so if you experience PEM setbacks that you give yourself enough time to recuperate.
Trust your instincts Susan and keep sticking up for yourself. When you are ready, connect with someone that uses a range of therapies and is experienced with trauma and whom you like and feel safe with. Your doing a good job, move forward at your own speed.
I just read the comments – after commenting myself, and my heart goes out to people who are getting worse. In the space of fourteen years, I have been really sick twice. The first time was six years ago, and I gradually got better within a year. The second time was two years ago, and this time recovery took two years.
I know there are no easy answers. I do value acceptance of bad times and bad feelings. I have learned to steer clear of positive psychology boosters. Allowing myself to feel pretty low for awhile seems to be a precondition for my eventual recovery.
I do wonder if more men with ME/CFS get better than women? There is certainly a female dominance in the illness, perhaps that also means when men have the illness, a greater % recover ? (At least partly). Ie. There is something biological happening that makes women more likely to get ME/CFS, and also less likely to recover.
This is only a hunch!!!
Hi Matthias
I am uncertain what to think regarding female dominance – the data is very questionable in my opinion. I do believe that women are more likely to get diagnosed for a number of reasons.
So actually there may be a greater dominance or not, there may be differences in recovery rates or not – I really don’t have any reliable data to form an opinion. My anecdotal experience over the years has not given me any bias to suggest a noticeable difference.
Having said that, I can definitely confirm that a significant amount of women struggle with recovery due to their monthly hormonal cycles which can cause flare ups – good medical intervention can manage this, but is rarely provided.
In my experience fluctuating monthly hormones cause fluctuations in baseline, making pacing more challenging and crashes more likely. I reckon there are other reasons too. I recommend birth control or HRT for any women not yet post menopausal (if tolerated).
PS hi I’m new, been too severe to participate until now.
this program is also available in Romanian or only in English because for me everything is psychological, that’s how I trigger Cfs from stress and thoughts
Only In English – sorry.
If you are primarily triggered psychologically, working with a good therapist should be supportive. Seek to engage in additional recovery strategies to complement this.
With two people named Dan mentioned in this quite interesting post, I got confused a few times. Adding the last name when you shift from Dan Moricoli to Dan Nueffer might help me follow the story.
Fixed! If you see “Dan” it’s Dan Neuffer; if you see Dan Moricoli – it’s Dan Moricoli.
Thanks!
I think the biggest mistake I made early in my illness was taking a lot of immune boosting herbs. I think this kept me sicker for longer. I trued too hard to boost my immunity, on the assumption that my condition was viral and the virus needed killing!
The evidence is pretty clear that our immune systems are overactive earlier in the illness.
Interesting comment.
There is a lot of interventions to correct anomalies. The question I always ask is WHY do these anomalies exist !? Sometimes supportive treatments are helpful, sometimes not. I think the difference is that ‘fixing’ something that is adaptive is not helpful.
I admit to some and unsure about alot. 😉
To feel better you need to feel better … Of course this essential wherever we are in our lives. Enjoy what you can, that is also my take on pacing. Do what you can without getting worse, and when like Life of Brian Always look on the bright side of life.
We talk about lost lives, we speak of live as an ongoing theater outside of our own cage. But life ist what is going on, everyday. May not be the life that we hoped or planned for, but what we now have to do our best with. That part resonates with me. We cannot stop living, and at least you writing here have that capacity, at least sometimes.
I do not think that makes us worse! And I really prefer feeling positive than out of hope.
To sum it up: If I’m now sick, I will at least try to feel my best as I can in the meantime.
Thank you Dan & Cort for this interview, which I found fascinating. I like the simplified advice to invest small gains of wellness in more wellness… because the shoulds are strong in all of us.
Cort, I also often get the red line across the face when I’ve overdone it. Do you happen to know what that’s about? I tend to file it under ‘my skin gets cranky when I’m pushing too hard’.
A compadre! I don’t know – I keep forgetting to bring it up with doctors.
At least our stripe doesn’t look like the butterfly rash of Lupus. I son’t remember to mention it either, or take photos of my face for later reference.
I don’t think it is the lupus rash or I would be in much worse shape than I am – thank the gods. My mother, however, had a severe case of Sjogren’s Syndrome – so autoimmunity does run in our family.
Dan, can I say I have loved listening to your interview. I love your sense of humour and your whole way of thinking. I got ill after a flu vaccination ten and a half years ago and have never recovered. I got slightly better after four years but then crashed and deteriorated since. I may be unusual in that I didn’t get ill until I was 72 years old so now have age as a factor and have recently been diagnosed with severe heart failure, possibly not helped by five years being bedbound. A friend gave me your book and it makes so much sense to me. The fact that you have interviewed so many people who recovered by whatever means gives me hope that recovery is not impossible. Keep on doing what you do and thank you. Thank you also to Cort for bringing us the interview with Dan, you did well to keep going.
Thank you for your positive comment – I am glad you are supported by the work. Hope you are making the most of every day and that you enjoy a little recovery progress.
Dan, you say of those who’ve most recovered that they ‘resolved what led to their being unwell … how and why you ended up [ill]’. For those becoming ill via viral infection or head injury (ie. clear events leading to distinct physiological outcomes), perhaps also with clear genetic influences, and in the absence of trauma, what does this mean? How do you ‘resolve’ other than no longer being ill? What prior resolution are you meaning?
I second Sue’s question… i dont know exactly what made me ill in the first place. I do recognize *several* potentially contributing factors, but they are just logical guesses and too confounding to sort out.
That said, I have been making very small and very slow gains by first ‘strict HR pacing’ for almost 3 years to do ‘energy system triage’ and very deep rest with 20+hrs/day miserably ill in bed. During this time I definitely deconditioned a good deal from the inactivity, but as the ‘lesser evil’ to pushing and staying in PEM.
Lately I have been stabilizing and able to move into more of a ‘VERY careful rebuilding’ or ‘pragmatic pacing’ phase, with only 18+/- hrs in bed (plus extra rest breaks), some very light floor ‘exercises’ (to use the term loosely), and gradual ‘exposure therapy’. I feel compelled to strike a daily balance – based on symptoms and how I am feeling – between rest and careful activity, isolation and gentle stimulation, but always with the goal of #1 listening to my body and #2 respecting its ever-shifting boundaries. Its very trial-and-error, can be very frustrating, and I honestly dont even know if its the right approach or if Im playing with fire, but to me it seems very logical. Its hard to explain how to ‘pace and not pace’ at the same time, but thats what Im doing. I know its true in general (as Dan also states) that either an excess of OR lack of stimuli can make sensitivities worse, so its a very delicate balance. I try daily to find that balance, but as he says, its NOT linear and Im not forcing anything (NO GET!). Im 100% listening to my body and symptoms as my guide. I think I am making some small gains this way, though it is very slow going. Its at the very least making my limited life slightly more interesting!
I may have to explore Dan’s ideas a bit more, as they seen to be resonating with what Im figuring out for myself. My next challenge may be the ‘adding uplifts’, as I am still very work-oriented and I still feel guilty if I get a little bit of energy and I use it to, say, play piano, instead of helping my husband with a chore or doing something else Im ‘behind on’ due to illness. Very hard to give myself permission to do enjoyable things, even if it helps my health, when there is always so much that ‘needs to be done’. Can work ethic be pathological?? 😀
While I do recognize that Dan and others have seen hundreds or even thousands of at least partial recoveries, which do give me some hope, I also know thats still a very small % of the millions of us who have this condition. My hopes and expectations are tempered by this reality, BUT I hold them nonetheless, while also exercising ‘acceptance with a fighting spirit’ (to quote Bruce Campbell).
I will say in closing that I dont think I would be improving as I am if not for winning my disability case. The huge stress of the application process and surveillance and the intense worry about finances, on top of the illness itself, were definitely keeping my system spun up. Once that was approved I was finally able to truly start to relax and focus on healing, and started making those tiny improvements. I realize I am so fortunate and privileged to have a supportive family and safe home environment in which to heal, but even with that I often feel what I truly need is a year away from everything in a cabin in the woods. But Im so grateful. I only wish everyone could have the same chances at a peaceful healing that I am SO lucky to have right now; I think its my only fighting chance, and it could really help people improve so much more. Prayers for at least a clear biomarker to arrive soon, so more of us could access the support we so desperately need!
Well I guess I really went off on a ramble from my original reply topic lol!
Well that is of course a very sensible and logical question!
I am uncertain about the genetic factors in terms of how critical a role they play.
Certainly with a head injury, things get much more complicated right away. I have seen this in people who have post-concussion syndrome and ME/CFS. The problem is that the brain-training for post-concussion syndrome is usually not compatible with ME/CFS (triggering making the ME/CFS worse) – so whilst it is essential and helpful, finding a way to do it without worsening the ME/CFS is challenging. Finding a physical therapist or other practitioner experienced in both seems very challenging.
If on the other hand we are talking about other triggers, then we need to understand that the actual event is only half the picture. So for a viral illness for example, the first component to understand is the factors causing the illness – remember, how a virus impacts somebody has to do with the functioning of the person’s immune system. Again, there are many much more obvious and great factors then genetics here.
But even when we move past that the initial infection, the impact of the infection is not solely the infection. In fact, I would suggest based on my experience that a much bigger factor is how we respond to the infection and post-infection illness. We cannot control the infection, but we can control how we respond. An inappropriate response that leads to severe illness needs to be resolved. So if doing a whole bunch of other things is more important then resting (remember resting is physical, mental and emotional) to recover, then that’s going to be a problem that needs resolving.
Hope that makes sense.
Nevergivinup you inspire me with yr persistence intelligence and courage..I tend to very much resonate with yr insights.
I heard a professor in our field comment about the driving work ethic he had noticed in the long COVID population.
He said counteracting this could be an effective management strategy.
Thanks for yr story and power to yr elbow as you continue on yr invisible climb of Everest.
Wow thank you Liz, I am touched. Best of luck on your journey as well!
First of all, thanks for your great work Dan! I’ve been having CFS for 7 years and I started your ANS rewire program 3,5 years ago. It did not heal me but it saved my life. When I listened to the interview I still get a lot of ideas to fine tune my recovery journey. And a journey it is. To a better life and to a better self. When I started I couldn’t even watch your videos at once. Now I’m far better but far from good. And every single improvement was because of improvements of my personality! I do not HAVE CFS, I AM CFS. It’s the way I see the world and how I react to it what led me to my situation. CFS protects me from myself. I have to become a different person to overcome it. And every time when I make huge improvements over some months and fail again I know exactly why. Because my old personality came through and I pushed too hard. Wanted to force the final step to recovery. It’s a journey. Just appreciate the small milestones you have been passing.
Oh, my goodness, Polly. I loved reading your comment. I just reached the same conclusions and did the exact same things. I really resonated with Dan’s comment to put what recovery I have toward more recovery. Good luck on your journey. I’m on the same path.
Hi Gunter
Well I am sorry to hear you have not recovered yet, but glad you have been supported.
Chronic illness is such a tough journey – finding positive ways of behaving in the light of the challenges is really tough.
Obviously there is no magic bullet, but I can say I have seen many people struggle for years and then make a breakthrough. Stay gentle with yourself and keep striving to move forward.
Brilliant! Thankyou for this.
For me, this conversation has come just at the right time – i nearly didnt look at it because a short while ago i decided -somewhat apprehensively- to let go of all interactions in relation to CFS. That is, i have stopped charting the progress of the symptoms; I have stopped going on courses, attending classes; talking about it, [writing feedback!], keeping records. Ive stopped reading research and self help texts; stopped listening to online advice, deleted apps and health checkers, cleared my desk and my files which were strewn with papers concerned with this illness. Ive pared down supplements and am less obsessive about food. Apart from anything else the business of ‘being sick’ has been taking up so much of my precious well-time.
I was a bit scared of letting it all go and I kept Health Rising – just in case; I had done Dans ANS Rewire course 2.5 times a few years ago and learned a lot, so still peep now and again at what he has to say and there was so much in this conversation that resonated.
I have reached a stage where my symptoms are much reduced, especially my mood. Fatigue is still there …but i’m learning to live round it. i feel have absorbed as much as I can of the information and advice that there is out there – the sheer quantity of it all can be stressful but I am confident enough to challenge and reject some of it; to meld formal research with my own theories based on what i believe ito be right for me. I am in the process ofg creating a new life focussed on finding pleasure wherever i can – mainly in walking, painting and gardening- and this conversation has helped me to feel i’m on the right path.
Oh, my goodness, Polly. I loved reading your comment. I just reached the same conclusions and did the exact same things. I really resonated with Dan’s comment to put what recovery I have toward more recovery. Good luck on your journey. I’m on the same path.
@Polly Dick (and Dan N.),
Bravo! Loved your reply! I too noticed how consumed I have become with trying to find a cure for my ME/CFS issues. Most of my days I am doing SOMETHING (research, supplements, appointments and all the rest) having to do with my health–actually it is all very stressful–and I think Dan N. is making a point about this.
After listening to this last segment of his interview with Cort, I think ‘I’m getting his point!’;
Wipe your mind of all the worries and begin again like you were as a child. Fresh. Clean. Curious. Listen very carefully to what your body is telling you. Tired? Rest a bit. Feeling unwell? That’s O.K.–just sit with it. This too shall pass. Feeling a bit motivated? Do a little something. But don’t fill your mind with all that ‘other stuff.’ Do loving adjustments moment by moment as you live your life–poco a poco–as well as you are able. Tell your body, even if it is misbehaving, that you love it and want to treat it kindly. Then ‘forget’ you have ME/CFS for as long as you can and do what you enjoy. Try to appreciate what you do have. Surely there are many little ‘sweetnesses’ around you that you can notice. Time will pass and at the very least, the great burden of sickness will lessen. Just experience what you experience and try not to negatively amplify it. That’s not to say you shouldn’t do any helpful treatments, but just try to stay in the moment, free of the extraneous stresses which can clutter your mind.
So do you think I kinda know what you are talking about, Dan?
@Dan N.
You answered, several months ago, my query about whether my problems were from ME/CFS or EDS. To paraphrase you gave me a very soothing answer to be extra kind to myself. I felt so much better after reading it, it was almost like you had sent me an energetic as well as physical response. Thank you.
Hard as it is, after all my struggles with my health, I will try to follow my own advice. The health struggle has become like a bad, all consuming habit and if I didn’t have that habit, well, what would I fill my time with? I think perhaps that making the swap between focusing on bad health to focusing on more pleasant things will be one of the most difficult things I will try to do.
I too have taken a break from most research (except HR ‘gists’!), meetings, groups, drs, therapy etc lately, to just focus on tuning in to my body’s needs without all that noise and worry – very little of which has provided any answers thus far anyway. I am glad I am now much better-informed but it was all taking so much energy! Even dr appts, formal pt efforts etc were just so draining, they felt counter-productive. Its still a roller coaster but I am seeing much better progress once I let go of all that stressful (and probably necessary at first) ‘figuring out’! I know I will have to keep up on drs/medical documentation for my disability review in a couple years, but in the meantime NOT doing that stuff has actually been the most helpful.
Hi Polly, Michelle and Nancy
Glad it’s all resonating with you.
Everything gets so darned complicated. Yes Nancy, I think you are on track.
The best way to summarise things is to recognise that we are completely stressed out with the illness – physically from the dysfunctions and symptoms, mentally from the challenges it presents and change in brain function and of course emotionally because it’s a pretty tough gig. So reducing stress and retraining the nervous system in the face of this is a challenge and a balancing act.
I think you describe that dance well! 👍😉
(…)but it fits with Dan’s notion of ME/CFS being an autonomic nervous system, or a broken stress response disorder (…)
I totally agree with Dan at this point.
There is a big problem. Most patients end up in a situation where the stress is only made worse, for example, no benefits, loss of a job and friends and family members, no help of people and doctors tell you it is all in your head. The environment does not leave you alone. You need a place where you can rest. Only then your recovery can begin.
One guestion: what causes the broken ANS or stressresponse? I think it’s an autoimmune problem or infection.
I agree with you Gigs. It does seem that the Autonomic Nervous System & Stress Response are broken. I also believe the cause of this is either an ongoing infection in the nervous system &/or autoimmunity. I’m not so optimistic about Dan’s system working for the vast majority with ME/CFS, if in fact it’s being caused by a low level, difficult to detect infection of the CNS or autoimmunity where the specific autoantibodies have yet to be identified. Of course, I’m thrilled for anyone who recovers or even just gets a major improvement from this hideous disease. I’m pretty sure that Ron Davis & Maureen Hanson, who are 2 of the most respected ME/CFS Researchers & have very sick children, would have gotten their kids better by now if it were this simple for most & wouldn’t be studying viruses, the immune system & the mitochondria anymore.
Larry, in my case I had both ANS dysfunction due to chronic stress plus an infection (h.Pylori) that was not diagnosed for 20 years.
Early adolescent stress primed my nervous system into sympathetic dominance which I exacerbated with stimulating addictions and behaviours.
I then picked up H.pylori in my late teens which eroded my gut health over 20 years – dysbiosis, SIBO, candida, nutrient deficiencies, leaky gut and I suspect, leaky blood brain barrier. By then my immune system was exhausted and I was inflamed and had full-blown Central Sensitisation.
The constant stress of my lifestyle and unresolved trauma kept me stuck in the vicious cycle.
I had to do the therapy and nervous system rewiring PLUS treat the infection and subsequent medical issues in order to recover.
As I’ve been listening to the 4 parts of the interview I also keep thinking about Ron Davis’s son and whether Dan’s program would work for people in such extreme states. I have my doubts about that. But I do believe that many people have access to improvement and recovery if they can find the right treatment options for them.
Hi Larry, thanks for your comment. I also think that the latent virus in brains and the autoimmunity theories are the only valid hypothesis that are being researched. Maybe you are interested in the research of Prof. Cliff from Brunel in London:
https://meassociation.org.uk/2024/02/ukmeb-hhv-6-research-study-recruitment/
They are doing a big study now on the hypothesis that the inflammatory, episodic nature of ME/CFS might be caused by HHV6b brain inflammation. In an earlier study they have found it
I am very optimistic that the ME riddle will be solved very soon.
I am looking forward to the day where we don’t need to read anymore about people wildy speculating about the overlap of psychiatric disorders with ME/CFS.
There are folks who have psychiatric disorders or rather fulfill the criteria of “disorders” like PTSD. There are people who have ME/CFS. And then there are people who have both ME/CFS and PTSD or other psychiatric conditions.
An experienced ME doctor will be able to safely diagnose ME and then when they’re uncertain whether there is also a psychiatric problem present then they will refer.
Hi Gijs
Well said – that is the challenge isn’t it – easy to see why the illness perpetuates, especially if you have experienced it.
Don’t get me started on the gaslighting, it still gets a rise out of me even after all these years.
Well, it’s my view that it is simply a maladaptive response. One way to think of it is that when there is no good response to resolve the stressor, it ends up producing a bad response in an attempt to find the best homeostasis.
However, whilst the ANS model is central and key to all, we can also look at it from a strictly immunological point of view. The story sounds similar, but the mechanism are different (immunological instead of neurological). I suspect this is where a genetic component comes in, or possibly epigenetic changes from immunological stress.
However, I don’t see these things as limiting factors nor that they should distract from the core ANS explanation and recovery framework. What I would say, is that there may be therapeutic avenues for some people with this illness from the immunological point of view to make recovery easier – but I don’t believe these are a panacea cure.
Thx Dan,
How can we objectively test the hypothesis that the stress response is broken? I keep an open mind that it can also be a compensatory reaction and the stress response becomes exhausted with all its consequences. Suppose there is an oxygen or energy intake problem somewhere in the energy system, the body will immediately respond with an adrenaline rush from the stress mechanism. I would like to see a model that rules out or confirms this.
For example, if I start doing things and force myself, the stress response goes into overdrive and the adrenaline keeps pumping at rest and my body does not calm down for days or weeks. And is never really calm. So you’re already starting at a disadvantage. How do you think about this?
For a while I always thought the parasympathetic part of the nervous system was malfunctioning. Which is still possible. Or that the problem is in the brain stem.
I would like to see an objective medical model to investigate this hypothesis.
What your therapy does is actually the following: you break your leg – stress response – and then you avoid your broken leg -stress- as much as possible in order to step on it so that it can heal. To be able to stand on it again.
This ANS dysfunction can be measured in a number of ways. When I wrote CFS Unravelled a decade it was a hypothesis based on the known ways the body works and what I felt was evidently obvious! (I always say, anyone that has that many different kind of symptoms must either have ANS dysfunction or is making stuff up because it can’t be possible – sadly many folk suggested the latter) However, there is lots and lots of evidence that this occurs and it can be measured in many different ways – Cort has written about this in countless different ways – he is much better versed to comment regarding this as I focus on patient recoveries rather then following researchers.
Recovery is not simply about stress avoidance – it’s about changing how the nervous system responds to stressors. This should make sense, because many of us reduce stress as we get sicker and still don’t recover.
I do not profess to know but it has always made sense to me that there might be a common root cause amongst many sufferers – and can only encourage or, at the very least, urge not to dismiss outright (as we initially did) the potential benefits of “treating” the Brain (ANS) – and the Gut.
I think a lot of people are upset when “brain rewiring/retraining” is mentioned because it comes across as validating the illness as a “mental health problem” and then it all gets caught in the weeds over that argument/defense vs considering such treatment protocol. It is your physical nervous system (much better explained by the experts).
These relatively simple yet counterintuitive, non traditional medical approaches are gaining well deserved respect and backed more and more by neuroscience research -latest one -https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10886399/?mc_cid=dd7fd94f57&mc_eid=7485550805.
Also:
“Breaking Free” by Jan Rothney runs a similar program “Reset To Thrive” (my son has one on one coaching with Jan but book alone is great if unable to afford coaching). Listen to the audiobook BEFORE making determination – she has a lovely calming voice, common sense approach after having suffered herself, bed bound etc.).
Jan, as well as couple others DO have a different approach to pacing and crashing – and it has been like a breath of fresh air for my son’s ability to recover. (one similar program calls PEM/crashing “Adjustment Periods”)
Most incorporates somatic therapy for PTSD.
Re GUT – (recent study showed how gut microbiome was altered in Covid patients so can only assume similar for ME/CFS etc. – with so many having gut issues).
My son’s IBS/Leaky Git/SIBO was treated with traditional meds followed by a specific diet which was full of great options so as easy to stick to.(Thank you Cedars Sinai LA, Motility Clinic)
It took 12 months of well meaning but useless visits to every specialty under the sun -each of whom advised us “oh we only look at this part of the body” as though nothing was connected. And that included a LC specialty clinic. (Exception being Cedars).
Like all of you we could write a book on the journey and my son is not completely out of the woods and will require ongoing mitigation in handling of stress, maintaining a good immune system, good diet etc.
So this is my my long winded way of suggesting don’t knock some of the “simple” potentially helpful things until you have tried them.
So you make great points – it’s about looking at the big picture of what’s going on and tailoring it to the patient!
This whole brain-training mental connection is frustrating and a challenge from an educational point of view. It’s not just about the information, it’s about the experience that people have being ill.
When stroke patients do brain-training, there is not such issue around it ‘all being mental’ or people being offended. That is because they are never gaslit – everyone recognises they have a real physical illness. Us CFS/FMS/POTS folk are a little sensitive giving
Oh yes, I understand the sensitivity and gas lighting. Been there! Your approach philosophy and style seem is so in line with Jan’s and is why I strongly encourage anyone to take a step back, take a deep breath and trust your program (set aside the understandable defense/fear of being labelled a mental health treatment). If I am correct, ones ANS is being triggered to do it’s job to protect you (not to consider if you are happy or sad)…but it’s gone haywire and over protecting. This is the part that needs calming. While it “appears” to be akin to CBT etc, many who have embraced it know the difference and it has been a major reason why they have gotten better. Love your “pacing” comments.
All this being said, there were, in my son’s case, physical issues that needed to be addressed. Including low hanging fruit such as the MTHFR gene, inability to metabolize critical B & D vitamins (a whole other webinar) …….so debilitating and yet so very easily addressed with a simple methyl folate vitamin!! Not one mainstream medical “specialist” even considered this or was curious as to why his B & D were low (he ate plenty of meat and got plenty of sunshine). I could not let go of my need to know about “why” his levels were so low for no apparent reason. And yes, this has been show caused major mental health problems/depression/anxiety…. because if this aren’t metabolizing then no natural (or prescription) dopamine/serotonin etc. etc is getting to the right place. Over simplification I know.
I just found out ,after 35 years that my childhood home has higher lead water content than that of FLINT MICHIGAN water.no wonder I’m not recovering!!
Can anyone tell me if Dan’s program is available in spanish or with spanish subtitles?
Thanks!
I don’t think Dan’s program is in any language other than English. I sent him an email to find out if it was translated into French, he never answered me. People asked him if his program was in Romanian and Portuguese, he never answered…
Hi Claudine,
You are correct, because the program is so comprehensive, it has not been translated and is only available in English.
We did respond to your question on the 29th of March – please check all your folders to find it (including spam).
Bonjour Dan, le 29 mars ??
Seems like an overdose of anecdote to me. Sure, anecdotal evidence can provide valuable leads to scientific study, but what’s the point of endlessly collecting it, unless for a sort of oral history project, which is interesting sociologically but goes nowhere in terms of drawing scientific conclusions.
How about looking at a randomised, representative sample, following patients over many years? (I realise this would be out of reach for an individual without support of an academic or research institution.)
In the absence of that, is filling the discussion space with anecdote a good idea?
Hi Sarah,
Yes indeed nobody is interested in funding such things.
However, I don’t think there is much to be learned by simply following patients over years.
Even looking at scientific studies, the question has to be a study of WHAT? If you can recognise that the answer isn’t a panacea, that you have to tailor the recovery approach, then it becomes clear how doing a study of this or that is meaningless.
I get frustrated with the way that health gets individualized in a lot of discussions. This applies not just to ME-CFS but to health issues in general: we don’t face these challenges in a vacuum. Regardless of what we try to do individually, we do it against a backdrop of health inequality based on a wide range of social and economic factors, including sex, gender, race, ethnicity, income, region, literacy, age, environmental health, and more. On top of that, we have varying levels of support and responsibility in our personal lives, which can either help or hinder our progress. Health isn’t an individual matter, and it’s far from being a level playing field. Let’s start incorporating more discussion of privilege (or lack of it) into our discussions about recovery, and demand health equity across the board.
👏🏼👏🏼
it took literaly chemo to put some people in recovery, proper recovery , yet you pedde this unscientfic nonsense
I agree Siobhan. This will not work for most with ME/CFS. This disease is an immune dysfunction disease for the vast majority. It has an autoimmune component, just like M.S.. So would Dan suggest people with M.S. do the ANS Rewiring ? Or people with Lupus? The symptoms are very similar & probably have a similar but not necessarily identical etiology, with autoimmunity &/or immune dysfunction being at the core. These other diseases are treated with drugs . The most effective treatment for ME/CFS will be a drug too. There just aren’t any approved right now.
I too believe that ME/CFS will best be treated with drugs but I wonder if deciding what ME/CFS is first and based on that deciding what treatments will or will not work is the most effective way of going about this. For one while ME/CFS may very well be an immune dysfunction disease, immune findings tend to be all over the place with no obvious core problem. That’s not to say one won’t show up at some point but the point is that saying exactly what ME/CFS is – an immune disease, a metabolic disorder, a circulatory disorder etc. – is impossible at this point as it contains all of them.
The MS/Lupus analogy really doesn’t hold. MS and lupus have drugs – lots of them – and lots of money have poured into understanding them, so, of course thats what people with those diseases will do. This is not to say that mind/body techniques can’t be very helpful in autoimmune diseases, though, I invite you to check out The Last Best Cure – about a women with an autoimmune disease who had tried all the drugs and was miserable and in failing health and, with no place else to go, turned to mind/body treatments. They helped enormously both symptom-wise and with regard to her immune results. We have some blogs on that book on the website. ANything that can help to tamp down the SNS and rebalance the immune system could be helpful.
Cort, I’m going to have to respectfully disagree with both you & Dan that my argument doesn’t hold when comparing M.S., Lupus etc to ME/CFS. You are making an ASSUMPTION that it is a completely different disease, where I believe they are very much related, & hence the eventual best treatments for ME/CFS will be drugs that are probably similar to drugs being used for ME/CFS, lupus,etc.. Case in point: I met a girl at an ME/CFS conference 12 years ago in South Florida that was put on my one of our country’s top ME/CFS experts. She was there because we had virtually identical symptoms & both had been diagnosed with ME/CFS for a couple decades. We also both came down with the illness in our 20’s after a ‘Mono-like virus’ from which neither one of us ever fully recovered. Eventually she got a brain MRI that finally showed something abnormal & now all of a sudden she ‘qualified’ for a diagnosis of M.S. & received that diagnosis & treatment accordingly. We had essentially the SAME symptoms & were at that conference for the SAME reason.
Hi Larry – There are similarities for sure – particularly with fatigue – although one study that compared the two found a ton of fatigue in MS but almost no post-exertional malaise. In the end I think ME/CFS will show similarities with many diseases.
There’s one big difference that popped up in my mind after you brought this interesting topic up = there are so signs of structural damage in the brain in ME/CFS. Instead the brain issues more revolve around blood flows and connectivity issues; i.e. some parts of the brain are either too activated or are underactivated and it’s throwing everything off. That might be one reason that things that can help in ME/CFS might now in MS.
Mind/body studies have been done in MS by the way. A recent review found this.
Background. Mind-body therapies are used to manage physical and psychological symptoms in many chronic health conditions. Objective. To assess the published evidence for using mind-body techniques for symptom management of multiple sclerosis. Methods. MEDLINE, PsycINFO, and Cochrane Clinical Trials Register were searched from inception to March 24, 2012. Eleven mind-body studies were reviewed (meditation, yoga, biofeedback, hypnosis, relaxation, and imagery). Results. Four high quality trials (yoga, mindfulness, relaxation, and biofeedback) were found helpful for a variety of MS symptoms. Conclusions. The evidence for mind-body medicine in MS is limited, yet mind-body therapies are relatively safe and may provide a nonpharmacological benefit for MS symptoms.
https://pubmed.ncbi.nlm.nih.gov/23227313/
We should probably think more of Dan’s as other practices as more the norm than the exception. A review of mind/body studies in rheumatoid arthritis done in 2010 (!) found this
Rheumatoid arthritis (RA) is a chronic, autoimmune disease that affects approximately 1.3 million Americans. It is characterized by inflammation of the joints, most often affecting the hands, hips, and knees. Presently, there is no cure, and the commonly used pharmacological therapies are not always effective and have significant side effects, especially when used long term. Consequently, there is a need for alternative treatments for RA. Mind-body medicine (MBM), which uses the mind to affect disease processes, is a promising area for many pathological conditions, especially autoimmune disorders like RA.
In this review, we highlight the basis for psychological-based interventions for the treatment of RA. The notion that the mind has an impact on immune function and several processes that underpin the pathophysiology of RA is well established. Correspondingly, there are several lines of evidence to indicate that psychological-based interventions can favorably affect these processes. Clinical trials of MBM in RA have most commonly assessed outcomes such as pain, functional disability, psychological status, coping abilities, self-efficacy, and joint involvement. Across studies, statistically significant improvements were found for all outcomes, though the clinical significance of these changes is open to interpretation. Given that the RA patients included in these studies had generally maximized the use of pharmacological options, any additional therapeutic benefit may be considered significant”
https://pubmed.ncbi.nlm.nih.gov/21507802/
Hi Larry,
Not sure what ‘this’ is that you are referring to.
I am no expert at MS, but I don’t see how that would work based on what I know.
Interestingly, whilst I my focus has been on strictly neurological illnesses, top researchers working on neuroplasticity for Fibromyalgia have indeed found their work to be directly relevant to other conditions like Arthritis. So extending this type of work to immunological based illness may indeed be relevant.
Is this how people with AIDS get better? No they have treatment so they can hold their own.
Is this how people with diabetes recover – no they have treatment.
Is this how MS is helped ? No they have treatment.
You will always find the odd 1 or 2 that needs less treatments. In all diseases we don’t always know why.
He is banking on those few who can get them out of PEM to give him evidence his understanding is correct and makes him and others like him dangerous to many.
Until such time all other post viral illness like I have mentioned, get recovery using his understanding then I think we all need to make sure every time those that believe they know the answers without tests treatment or research we should question them.
He is right, we need to know why the body does not respond and self heal like so many others do. We have tests and understanding we should use them as they do in other illnesses and make sure research is funded to that end.
Hi Tina,
Yes treatments can help for this illness, if we get the right treatment for the right dysfunctions. But I am sure you recognise that there are no treatments that cure people.
That is because the treatments don’t address the root mechanism of the illness, they treat the resulting dysfunctions and symptoms.
So some treatments work for some people who have those dysfunctions – nothing new there – I wasn’t really clear what your point was!?
PS: People with type 1 diabetes don’t recover as far as I know. People with type 2 diabetes don’t recover from treatments, but rather from lifestyle modifications. Treatments simply manage symptoms.
Dear Dan,
You state “Dan Neuffer on RECOVERY FROM ME!” So you are misleading those with ME. You can clearly see that from your response!
This is what the ME community fight against all the time! You made my points and the reality of the situation very well! So you cannot then say you did not understand my points! A game the PACE trial authors play all the time.
You may offer some symptom relief and or some support for the body but you cannot offer recovery. You hide what you say you know and I guess you have to pay and try, to find out if they work! Do not you offer testing to show progress or the data.
Do you offer support or care when they don’t, if not that is dangerous. How many have tried and failed been left worse? Data on this is very much needed too.
This approach is very much like the Dragon’s Den ear seeds here in UK or the lightening process – there is no scrutiny and it hides the very desperate need for biomarkers, tests to show results or progress and proper healthcare and therefore it is irresponsible.
There is a difference in offering understanding and life experiences openly and keeping knowledge for payment and no scrutiny!
The other issue is that more we hear the word “recovery” in the ME community the less we get in funding in research. Why would those in charge bother to fund research if people are said to recover?
Hi Tina,
I think you are missing my message totally.
There isn’t some kind of magic panacea cure that I am hiding until you pay me or something like you suggest.
Also, nobody can guarantee recovery as far as I know, that would be a the holy grail cure – right!? No such thing exists.
Not sure what you mean by ‘offer testing’ – I encourage people to complete a survey once a month so they can measure their progress.
Biomarkers are nice, but what for? Surely we are past legitimising the illness as being real! I think our focus should be on helping people feel better and get more access to helpful treatments.
I cannot speak for other approaches that you mention, but my message has always been for greater engagement with healthcare providers. The key is understanding what for, why, how and in what context – so I have spoken a lot to that. Going to the Dr expecting to be cured is silly, but getting support for severe hypothyroidism or removing parathyroid tumours makes a whole lot of sense!
Funding in research generally is pretty much driven towards pharmaceutical solutions – great if you have a problem that lends itself to that, not so great if you don’t.
I hope you are not suggesting that all the people that recover are fakers or that they should hide their experience. I would have thought that if there was any genuine interest in finding solutions to this illness for the wider masses, that all the different recoveries would be studies in detail!
The real problem in that is that the solutions from ALL recoveries are complex. Even though many people suggest their recovery was from this one amazing thing, in fact there are ALWAYS many many things – without exception. If you listen carefully to any interviews that go into a bit of detail, you will always hear that.
I hope that closes the gap – I feel like you are taking exception to things I am not even saying.
May I ask, did you watch the whole interview?
A clear biomarker is actually a CRITICAL need while treatments are being researched, as it would offer definitive proof of illness and thus help patients access needed support and services – WE are long past legitimizing it as real, but disability insurers, SSA etc most often still do NOT recognize it as such. Or, insurers do anything they can to label it as a ‘mental health’ or ‘subjective’ health issue so they only have to pay for 2 years. All the helpful treatments in the world may do little good if one simply cannot pace (the most important part of any degree of recovery) due to being denied the assistance they need because there is no clear biomarker. Many folks are having to continue working themselves into more and more severe status, just trying to support themselves and their families when they should more than qualify for disability or other assistance. Biomarkers now!
Hi Cort, I am still waiting for the revelation you said you found in Dr. Nath’s $81 million study. When will you review the third part?
Reading these recovery stories through meditation and the like, rather than medication really makes me wonder if we are looking at the same illnesses. I’ve done meditation, yoga, breathwork and Buddhist practices (before and after illness) that certainly helped me cope with my illness, but never made me recover. My illness continued to progress to a point where I was unable to do them any longer, which was a grief. What finally made for a limited improvement (I can’t say recovery) was finding a doctor that believed I was ill and not just deconditioned and getting appropriate medication. I would have loved for meditation and breathwork to have the same effect as pharmaceuticals, but they just don’t.
I also wonder about the differences between people who have improved with pacing and the people who have improved with judicious pushing- stimulating the nervous system just enough. There was no amount of stimulation that made me better. Any stimulation made me worse. With medication, now I can tolerate more and do more, but none of my actions caused this. The gains I have made really have been just from the medication.
Ultimately, I see mental health gains from mind/body therapies, but as I got sicker these strategies could not even slow my decline.
What a curious collection we are!
Hi Wabi-sabi
I have never seen someone recover from solely doing meditation – so I would be interested what recovery stories you are referring to!?
The pacing/stimulating issue is complex and fluid – people ask me for advice all the time and I point out that it’s about what ACTUALLY works rather then what anyone suggests. So it’s not just about the difference between patients, but also the changes as our illness progresses and as we recover. Lastly, in my experience, I would say that most people do too much and too little at the same time. I think this occurs because people’s lack of understanding what the real issues are and only identify physical triggers. Mental stress is often not understood – people often think they are doing nice relaxing activities and don’t realise that they are mental stressors which is why the PEM often catches them off guard.
Whilst de-conditioning becomes an issue over time, I think it’s really important to recognise that’s not why we are sick – goodness, that would make things simply – if it only was the case!
Glad that tapping into some of these strategies has supported you mentally – hope you make some progress with recovery soon.
Hi Dan,
You asked, “I have never seen someone recover from solely doing meditation – so I would be interested what recovery stories you are referring to!?”
Primarily to this quote here: “Dan’s experience is that people who recovered solely using mind/body approaches tend to be on shakier ground because they often haven’t resolved what caused them to become unwell in the first place.”
When I said meditation I did say “meditation and the like”, however, I’ll admit I have a tendency to lump mind/body therapies in general under meditation.
However, the idea that it is possible for anyone to recover, however shakily, with mind/body therapies alone is one I find curious and problematic. It does play into the psychosomatic narrative of our illness. If we accept that our illness isn’t psychosomatic, as I’m sure you do, it’s a puzzle why some of us respond to these therapies and others don’t. I’d like to hear your thoughts on why you think this happens. What these therapies can and cannot do is a question I wrestle with frequently.
Yes, pacing is hard and finding ways to rest that are actually restful is hard too. But the point I am trying to make is that for my variety of this illness, there was no amount of pushing, however small, that was beneficial. Finding what works as you suggest, meant doing as close to nothing as possible. Since you have found people for whom judicious pushing was helpful at times, again I wonder what is the difference in the illness?
Regards,
W
Hi W
Gotcha about the meditation 👍😉
Well, the whole term mind/body medicine is problematic, this idea that our mind can overcome physical problems in some supernatural way doesn’t resonate with me. I am not denying some people having extraordinary experiences with all kinds of illness including severe incurable ones, but I think reaching along those lines is problematic to say the least.
Saying that ALL people can recover by ONLY brain-training is equally problematic. Which brain-training to start off!? The key is understanding how the physiological issues are driven by the nervous system and vice versa. Understanding secondary issues that have their own dynamic is also key. So for example, somebody that has IBS (ie. ANS dysfunction, same as CFS, Fibro, POTS) may go on to develop severe SIBO. Now I am not saying that treating the SIBO traditionally will make all things well, because of course you have also address the reason for the SIBO, the ANS dysfunction. And yes, some people may recover by only focussing on ANS normalisation. But in many cases, addressing the SIBO in parallel is essential for progress on both fronts. That’s why I advocate for a tailored multi-lateral strategy.
The discussion about ‘psychosomatic’ is problematic, because people have been gaslit as the illness being all in your head or not real and such like, which of course we know is not true.
The problem is that people don’t realise what psychosomatic means. Many heart-attacks are triggered psychosomatically – nobody moans or complains about this fact because there is usually underlying heart disease.
So here is the definition :
” caused or aggravated by a mental factor such as internal conflict or stress.”
Do you know ANYBODY with this illness, that if they pushy themselves mentally by for instance working or studying or reading or whatever – OR who gets into a big fight with someone that causes upset, that doesn’t end up having their symptoms ‘aggravated’?
We all recognise physical stressors like an infection or physical activity worsening our symptoms causing flare-ups or PEM – the truth is, we all recognise mental or emotional stressors doing the same. The reason, the ANS doesn’t care – stress is stress.
So whilst mental or emotional stress may have nothing to do with you getting sick (ie. this is not a mental disorder, it’s a neurological illness), once you are ill, all stressors trigger you. Even basic sensory input like sounds, lights and smell trigger people.
Psychosomatic component once established – yes. Illness not real or in your head or mental in origin – NO!
Cory- thanks for something positive!! What’s the band you have that turned red? Seems helpful
Thank you so much for this video, do anyone know /tried “SOMATIC EXPERICING”(SE) therapy(Peter Levine) in relation to ME? The deskriptive of not to much not to little reminiscens me of the descriptions of titrering in SE
Helo again I Wonder how do we know That ANS symptomer Are primary,?mabye they are secondary reactions to the ancient immunesystem cf Itaconate Shunts Hypothesis?
Somatic Experiencing was one of the best therapies to help me recover. I tried a lot of different psychotherapies and spiritual modalities to try and relax and heal emotional/psychological trauma and although they had some use, they didn’t help my Fibro or fatigue.
Somatic Experiencing allowed the trapped trauma in my nervous system to release in a slow and gentle way. The therapy helped me to re-wire my nervous system out of stress so that I was able to relax for the first time in my adult life and from there, all the other healing unfolded. My SE therapist is one of my Angels and I am so grateful for him. I also did Irene Lyon’s Smart Body Smart Mind online program which is fantastic.
I have watched these videos with interest. If Dan is still answering questions I have a couple of questions about his program.
Firstly, I’ve realised that something which holds me back from having hope of recovery is that to me hope = pressure. Through acceptance I have found peace, but as soon as I make room for hope I feel pressure and guilt that I should be trying to do more. I think this is an obstacle to recovery, as it makes any attempt to do more very stressful, which of course drains my energy! Is this something ANS rewire could help with?
Secondly, does the program involve ignoring symptoms/pushing through despite not feeling well enough to do something?
Thank you in advance.
Wow Rachel – what a poignant issue that you raise.
Yes, acceptance is a powerful way to reduce stress, but like hope, it’s a double-edged sword.
What you speak to here explains why people have such varying experiences doing the ‘identical’ strategies – in truth, there is nothing identical about what people do unless it’s an external treatment applied to them. This makes doing science on these kind of things difficult.
What I would say is that you have a choice. You choose whether you should pressure on yourself and go down the guilt road or not. You choose whether you make your attempts more stressful.
My comments are meant to empower you! Yes it’s easy for us to feel the things you speak of (I am no different), but we MUST make a choice to be more compassionate and gentle with ourselves and not do such things to ourselves.
I speak about these things in the program, but that alone doesn’t stop folk going down the wrong path – it’s challenging and sometimes these habits take a while to change.
So it’s not WHAT you do, but HOW you do it – do everything to reduce stress and feel better. Don’t do it perfectly, less perfect is usually more perfect. 😉👍
‘ignoring’ symptoms is not helpful, but again, some people might describe some of the strategies that way. If we push, we usually get reminded why we shouldn’t (PEM!).
However, some brain-strategies including changing how we relate to certain sensory information – what meaning we give it, if we anticipate them and how much attention we give them. That could be described as ‘ignoring’. But there is a difference between ignoring and pushing, and noting and not giving attention.
Having said all that, I have found that actually ignoring some slight symptoms and moving forward when we are balancing our overall activity well and have progressed enough with our activity can be helpful, even if we get some slight payback. But we must do such things sparingly and always recover before trying again. Ongoing pushing leads to the same outcome time and time again – CRASH!
Hope that makes sense – big concepts with many distinctions for a website comment – we seek to help people understand these things with hours of education so hopefully my answer isn’t too ambitious in nature here.
Thank you for taking the time to write such a comprehensive reply 😊 you explained things clearly, and I appreciate your comments on not doing things perfectly!
I am currently doing the perrin technique, I have seen some improvements and evidence it’s working. However the process has made me realise what a problem I have with certain mental barriers, such as the pressure I put on myself, along with fear, and I am concerned this will slow my progress. I think I need some tools to help me with this and I am thinking ANS rewire may be a complement to what I am already doing.
I have signed up for the initial free lessons and will take it from there.
Thank you again 😊
Dr.Neuffer, This was sooo interesting! Thank you! It explained my life with ME to a T.
I’ve had ME for 38 years. Sudden onset. Got sick at age 36 and was bedbound for 3 years- then functioned at about 25% for 10 years. Then my husband changed careers relieving a huge amount of stress for me and I recovered to 70%. Did pretty doggone well (still couldn’t work outside the home though) for about 10+ years. Even got to travel some. Then started going back down gradually. The illness morphs so much. Now at 72 I’m at about 25-30%. I had adopted your philosophy long ago and I’m content with life. It is what it is and I have so many blessings to be thankful for.
So sorry you have been unwell for so long – glad you have managed to so well given all the challenges.
… 24.40 “how do you define uplift?” … any activity/action which releases a wee shot of dopamine, our natural ‘feel good’ drug.
It’s not an easy task to find joy while managing debilitating fatigue (et-al) daily but that’s exactly where the magic source sits; allowing ones self to find a moment of simple joy from the smallest of things has an uplifting affect and elevate ones mood and overall well being… even for the slightest of moments.
Thx Cort for all you do for our community.
Loved this conversation and I have so much respect for both of you and the contribution you are making to our community.
My 90% recovery has come from a mix of Dan’s strategies (not through ANS Rewire but I found similar processes along the way) and the invaluable information Cort has been providing on Health Rising over the years.
My root causes were a H.Pylori infection (20 years) and chronic stress that was wired into my nervous system in early adolescence. Over 20 years these slowly eroded my health and caused dozens of other issues that I had to slowly address. I was fortunate to have the money and access to medical professionals to help me figure out all the details (although I usually went to appointments with research I got from Health Rising to discuss with them)
Pacing was a useful strategy for me for a little while but I increased slowly as the physiological issues were addressed. Graded exercise was helpful once the core issues were addressed.
Having been a vipassana meditator for a decade I used mindfulness to set my mindset right and to pay very careful attention to what my body was signalling it needed and was capable of day to day. I also ensured I didn’t place limiting beliefs onto myself and get stuck in a sickness mindset.
Now at 90% I am back in the gym, back to part-time work and even stay up late dancing every now and then. But I’m always listening to my body and my health is absolutely my #1 priority. I will sacrifice everything else in order to keep improving and to not go backwards. Nothing is more important.
If I went back to the lifestyle I lived in my 20s I would not be well. I have evolved into a much healthier, happier person who has healthy boundaries and knows how to advocate for myself in the world.
Wonderful to hear Georgie
I love sharing independent recovery stories, they are my favourite.
I encourage you to keep going and seek a full and robust recovery. Make the most of everyday and if you feel so inclined when the time is right, please contact me to share your story to bring hope to others.
And yes, Cort does an amazing job with Health Rising.
Before reading/watching this, I knew nothing of Dan’s background, though I had heard of his name. Some of what he says here did resonate with my own experience, though I may not have explained it in quite the same way, (and I will find and watch the other 3 videos of this set of 4 now).
I have always felt fortunate not to have ME/CFS in a severe form, but it certainly has changed the pattern of my life. I developed it so gradually over the course of some 10 years before I recognised what it might be. In fact it came on during my menopause, and I thought it was related to that because I had so few obvious menopausal symptoms. I was diagnosed in 2008.
Perhaps I was lucky that I was never put on any course of ‘treatment’ for ME/CFS so I was left to do my own research, and did try a number of approaches to get better – some experimental like LDN. I had very limited financial resources for this. I always tended to push myself a little physically with the things I loved the best, and was someone who said they ‘paced’ but in truth didn’t do it according to the book – e.g. I helped people on an ME/CFS groups with their State financial benefits for 5 years, doing gardening, and working with antiquarian books as a volunteer and though I did have PEM, I didn’t ‘crash’ exactly, but did feel the impact. I was even in a performing dance/theatre group locally for people with disabilities, but came and went a bit based on my symptoms. I had to leave in the end, when my body physically wasn’t up to it, but then switched to the voluntary book work.
Some of my breakthrough moments were serendipitous. At a certain point I was researching ME/CFS less, but I decided to concentrate on the specific symptoms as I felt that if I could suffer less then I would have less stress. I spent about 7 years healing my gut as best I could, and now seldom have pain which has made a huge impact on my mental health. I tried natural progesterone cream on recommendation for a couple of things I felt to be non related to ME/CFS but by chance they reduced my migraines hugely – more relief! Then the issue related to my immune system which meant that I constantly felt I was ‘going down with something’, plus a horrible pain I would get in my sinuses at such times. A woman in a health shop asked if I sterilised my toothbrush, and from the moment that I put it in boiling water each night, and left it in Oil of Oregano overnight, this sinus issue has virtually never returned, and also the immune system seems to have largely recovered too. These 3 things alone have improved my quality of life massively and unlike Dan’s statement of people forgetting that they have improved, I have never forgotten the impact of these 3 things. My fatigue/stamina issues have remained, and sometimes worsened though perhaps because I have a tendency to push myself with the things I love doing.
I had a stressful childhood for sure, followed by an even more stressful adult life having married a man with bipolar disorder, who didn’t realise that was his problem until his 60s, and life with him for 47 years for this reason and others meant that I was in a permanent state of stress in trying to protect myself from his actions. I also have a son who was sectioned and diagnosed with schizophrenia though he doesn’t live with me. Both of my parents were in mental hospitals when I was a child of 6. In truth I feel was amazingly resilient until the age of 50, and I feel that I have achieved a lot under stressful conditions. I have never prospered in the workplace though and have had lifelong anxiety (as did my husband).
Even some of my physical ill health which in my mind has no connection with the ME/CFS issues or stress, has been horrendous at times. I have had multiple major eye operations over a period of 10 years – macular hole in one eye, and 2 detached retinas in the other eye, followed by 2 cataract ops. I am lucky I feel not to have lost my sight on top of all the rest.
In 2020 my husband died very suddenly at age 73. For quite a long time the grief of that overrode any advantage that I had to be free of the stress of living with him. Then I decided to move away to the other side of the country for a new life to be near to my youngest son (not the one with schizophrenia). I began to work on an allotment last summer, and the more I did that, and enjoyed the sunshine, the better I felt. At one point I felt that I was healed. Then I got Covid (2nd time) in Sept and as autumn came along and then winter, my health declined yet again.
I haven’t given up, though I am now aged nearly 72 with physical issues related to age (agonising Plantar Fasciitis for one). I am now researching Red Light Therapy and going to give this a try in the winter when I may need it most. I see people just a bit older than me, getting ill and some dying, so in one sense ME/CFS for me at least, given I am not at the severe end, loses it’s impact and meaning.
I honestly believe I’d be much worse if I had followed Dan’s theory about pacing. I’m not at all convinced that, in my particular case, “sensitization” is one of the main issues.
Hi David,
I find this comment curious. What do you think specifically would have made you worse?
Thanks for this article. Sorry Cort that the interview tired you out. The perils of journalism and sound research ;-). But thank you again. I totally agree with Dan’s approach. Do lots of different things to improve — not just pushing one target. I was mostly bedbound for almost 2 years, now 3.5 years later I’m 60-70% better . Now I’ll take Dan’s great advice and put my gains into more wellness and things I enjoy.
Wishing everyone improvement and some ease in your days.
Please stop using the term “recover.” And please stop focusing on people who have experienced “miraculous cures.” And please become aware that women and men generally have very different disease profiles, symptoms, and responses (a fact that recent research is finally discovering). I’ve never seen any statistics, but I’d be willing to bet that the number of people who experience quick and complete and lasting recoveries from ME/CFS (and related diseases) is pretty small (and perhaps more men than women?). I’ve watched all four of the interview episodes with Dan, and I am impressed by his compassion and sensitivity. I’ve read his book, and I am impressed by the helpfulness of the methods he advocates. I wish I had had his help during the 60 years (so far) that I have been struggling with CFS – it probably would have saved me quite a bit of time and frustration. As it happens, I had to stumble around on my own to independently discover the ideas, principles and methods that he advocates. But I did discover them (slowly, piecemeal, over many years), and they have helped me immensely, so that I’ve been able to live a reasonably functional life in spite of my illness. I’ve had times when I was housebound and bedridden, and times when I’ve felt almost normal. But I have never, ever, “recovered.” And I really don’t believe that it is fundamentally an ANS disease. More and more, I’ve come to the view that it is most likely an immune system disease – possibly autoimmune. But only the researchers can determine that – and they have only recently begun to take seriously the research work that needs to be done.
Thanks, Judy – I get that you haven’t recovered but what term should we use for people like Dan who have truly recovered?
For people who have fully recovered, using the word is perfectly fine. But I see it being used also for people who have partially recovered (say, 70-80%), and that gets confusing. But the biggest thing that bothers me is focusing attention so much on “recovery” rather than on “things that have improved my condition” Even Dan said “Stop trying so hard to recover!” But really, the terminology he uses is focused on “getting well” or “recovering.” I certainly know what it’s like to feel like sh*t day in and day out, year after year, decade after decade, and we all wish fervently for that magic cure. But it ain’t here yet, and we have no idea when or if it will get here, and in the meantime, we have lives to live. Dan has some great ideas on how we can improve/maximize our quality of life – I just suspect that for most of us, following those practices will not cure us.
Maybe remission would be better. Idk for sure but it seems that people with ME always have it looming over them to some degree even if they have partially recovered or even consider themselves to be cured. There are many stories of people thinking they’d recovered only to fall back again, and sometimes to an even worse state than they were in before. Also I’d imagine that causation may determine whether one even has the ability to be full recovered or cured. Comorbidities could likely have the same effect I’d imagine. So I think the trigger could determine a lot and I think what other illnesses people have could possibly prevent them from doing things that could improve their ME. I just hope we learn more soon. The Roadmap initiative looks promising. It has many people with much knowledge and true understanding contributing for sure.