Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

If you reread my post, you'll hopefully see me say you can get your head around the basics in a few days. It's just that that's the basics and also some people do this, dismiss it and miss out on the chance of ever deepening their knowledge to give it the best chance of working. For some people, they do the work over 1-2 years and find they are still learning, partly because they are learning about their own past and what might have caused their brain to be scared, partly because you can keep building on your knowledge. This work is a collaborative and experiential process and you do need to do the work and monitor how your understanding feels and changes over time.

Repetition is key to see what is truly working for you. As an example, one tool is somatic tracking. You can look it up on YouTube to see in action. It would be really easy to read about it, decide it's not for you and leave it at that (and fair enough if you want to do that). But it is only by trying it out a few times a week over a period of weeks, taking time to reflect on your insights, maybe tweaking how you do it by talking with other recovered people who have done the same and learning other bits of info about the theory behind it all that you will get the full experience. 4-8 weeks of work is actually nothing when you are in the middle of it and seeing improvements as the weeks go by, what you tend to see is people find it so helpful that they hungry to immerse themselves in it and learn as much as they can. 4-8 weeks is definitely nothing when you have lost years to being ill and this starts to change that.

Can I say anything about the process? The first part of the process is simply learning how neuroscience has managed to understand how the brain can respond to fear. It is like being given a handbook on what your own brain is doing and you start to go 'oh, I see how this works here, here and here in my own life.' I am such a fan of Lekander's book as he breaks this down so well, giving many people the ability to understand how he is describing it. Not all authors have that knack. Not every book is readable. Can I summarise his book here? I don't feel very skilled at attempting that and it is stuffed with so much interesting stuff that I'd be missing too many key things in it. I'm not an immunologist or a neuroscientist (I wish I was!)

With the above theoretical knowledge, you are then encouraged to do things that will calm your nervous system down. So that might be meditation, it might be journalling (there is so much evidence about journalling helping the brain process emotion including fear, even if we don't understand how that works yet), it might be getting regular time in nature or adding in very small things on a daily basis that make you feel joy. Now believe me, I had tried journalling and meditation whilst ill and they didn't get me better and I hear that a lot from others but this is where the routine of trying these things is important as well as understanding the neuroscience mentioned above to help you understand the role they are playing in calming your nervous system. For some reason, framing it in this theory makes all the difference.

Somatic tracking is then arguably key. This gets you to focus on a particular symptom with a watchful curiousity (that comes from mindfulness) while trying to reeducate your brain to feel safe. It's the weirdest, coolest exercise because you can watch demonstrations of it and symptoms disappear or start to jump around the body in real time. Someone can start with neck pain or ringing in their ears and then move to getting knee pain then nausea and then they all vanish. It's kind of like watching a religious healing except we can explain *why* the brain does this (see Lekander's book again which breaks it down, sorry!). I now know multiple people who had severe M.E who have tried somatic tracking repeatedly over months and recover. Some of them are detailed testimonials in FB groups, some are people I knew for years when they were ill so I know how incredibly unwell and restricted they are. I've watched them go from not believing it will work to trying it, thinking it's not going to help them and then it starts to and then they make huge strides forward. And the symptoms keep coming back and they go over and over these steps and the symptoms go away again. It's so weird to watch but there's no denying it's real when you see it play out.

I hope this helps a bit. No need to force yourself into exercise or to say 'stop' at your symptoms or anything.

 

Are you aware they have helped literally thousands of people to recover? I simply wouldn't have recovered if it wasn't for them. That doesn't mean I think they are perfect humans but I have seen so many testimonials from people they have helped and the PRT/EAET training means they will reach many thousands more over the course of their lifetimes. The simple fact is these two men are responsible for huge numbers of people with multiple chronic symptoms recover to the point of having really good health again. There are very few people who have had the positive impact they've had between them. And I've actually met Schubiner in person. He was the most gentle, compassionate man who talked to me about my past with lots of kindness and sensitivity (unlike many of the horrible doctors I met when I was ill). I was very impressed by him and I really don't like male doctors in general.

 

In one of my earlier comments I mentioned that any cognitive restructuring technique, be it early BPS theories, CBT, or this new brain retraining, all fall into the exact same trap.

and that trap is lack of falsifiability.

because no matter what your grounding theory is, if someone seems to fill the criteria of having done your retraining and is still sick, you can ALWAYS move the goal post. You can ALWAYS say they just didn’t do the somatic technique enough. That it needs more repetition. That they didn’t believe it enough.

I’ll only say this one more time. I’m really hoping it gets through:

If someone’s illness is different from yours and is the type that can’t be cured by your method, which you have no way of knowing ahead of time currently, then what you are doing in that interaction is the literal definition of gaslighting.

I spent years being open to tons of different variations of exactly what you’re describing. I desperately wanted them to work. But they don’t for me. They just don’t.

and you can say “I thought the same thing before it worked for me” all you want. That’s exactly the gaslighting I’m talking about. Because you simply don’t know if it’ll work for me, but you always have the plausible deniability of claiming I just didn’t do it “right.”

because the underlying logic is: if I did it right I wouldn’t be sick any more. Because despite couching claims with caveats, saying that it might only work for some, no matter how many times I say that it’s not working for me, I still get the exact same goalpost shifting.

[edited for clarity]

 

You were asked about studies, but you started talking about how much you like the guy. That’s what you would call a deflection.

So let me try to ask again: can you provide any studies that that support the scientific merit of their brain training approaches?

 

I am repeating myself but not currently. No. And that is a problem, but I don't personally believe a brain retraining study would be allowed to go ahead on M.E. as things stand. I said that in an earlier post and someone responded saying they would be ok with that, which is great. But I don't think most people would be ok with thousands to millions being spent on it instead of biomedical research. There would be uproar. The MEA would speak out against it. Patients would say they feel it would do them harm because it's just like CBT and GET (it isn't). There would be huge pressure on the research team to stop.

I would like to think in 20 years we will have a large number of studies scrutinising it properly. Until then, what we have is a very comprehensive break down of the theory behind why Schubiner and Gordon's ideas are likely helping people (Lekander's book) and thousands of testimonials from patients documenting how and why it helped them and the objective changes they've seen in their recovery. For me, I was unable to work at all and I now work full time (I had to build up to that by volunteering and then working part time), I couldn't walk far and now I can hike, including in hilly areas. I couldn't cycle at all and now I can, etc etc. I couldn't get out the house more than once or twice a week (and sometimes not at all) and I struggled to talk for long, now I have no limitations on those things. I struggled to concentrate on reading/watching films and again now I have no limitations.

 

As somebody who has recovered, twice, that sounds like naive nonsense.

You can't mistake the recovery process. A body that was ill and in pain stops being ill and in pain. Overlooking it would be like overlooking a bucket of water being thrown over you.

It's like recovering from a virus. You wake up feeling better. Lying in bed for weeks wouldn't alter the fact of the recovery, because whatever you did, all the symptoms of illness would have gone.

It's comical to suggest that people are somehow in control of this process. People can't stop themselves recovering.

The huge irony is that psychobehavioural interventions could potentially have a role for some people with ME/CFS. But this opportunity has been staring psychobehaviouralists in the face for thirty bloody years, and yet not ONE of them appears to have seen it. I can think of explanations, but none of them are flattering. Groupthink, incompetence, wilful ignorance.

This big flashing red beacon, the one that's somehow entirely invisible, has lit up internet forums since the early 1990s, and probably did the same in patient support organisations prior to that. It is this: everybody with ME/CFS—everybody—has reported they make themselves much more ill by overexerting. And some of them find pacing incredibly challenging. If psychobehaviouralists can't support people to adjust behaviours that always result in harm, what in God's name is the point of them?

 

I think this is a really fair point.

My answer would be that when you go through brain retraining, you start to spot certain signs in things people say that indicate it might work for them. So when people are adamant they've tried it and it hasn't helped them, the point about nudging them to look at bits they might have misunderstood is only to try to help them. That is all. I've seen it time and time again that people get stuck, get help to approach things from a slightly different direction and then they manage to start recovering. That makes it worth talking it through. People all learn in different ways. My friend gave up six months in to trying this work as she was getting nowhere. She came back to it 6 months later, tried using a different book and everything fell into place and she is now getting fully better. I have never turned around to her and gone 'SEE!' because actually, I think she's so brave to have come back to the work at all.

What this should never be is a process of shaming anyone or continually moving the goalposts as you describe. For some people, the timing is wrong to do this work or it simply isn't the right approach for them. That is completely fine. I always try to communicate that. You are, I'm sure, an intelligent adult who has given something your best shot and you have every right to then leave it there. Respect to you for even trying.

Why do I tell people 'I thought the same thing before it worked for me' when that might feel gaslighty. Because I need to circle back to the whole reason I am posting here. People get so stuck on the stupid PACE trial, on CBT, on how they have tried 'thinking positively' and none of that relates to what got me better. Many do genuinely not get brain retraining. If you do, great and I'm so sorry it didn't work for you. I really hope you find the answers you're looking for. I feel no desire to push you to keep trying something you don't want to. Really.

 

In the world of brain retraining, this makes sense though.

You had some symptoms. The brain gets the message it isn't safe (because symptoms normally mean the body is ill, aka there is a threat and you actually need to rest). You pushed through them. The brain is then actually getting another message it isn't safe (because if you are ill, intense exercise can be dangerous. Plus you aren't listening to your body so there is another layer of danger). So it generates even more symptoms to try to get you to look after yourself.

You are taking 'fear' literally, as in you're saying you weren't scared of exercise. This is not how the brain retraining world looks at it. You have to visualise it almost as if there is a primitive brain, stuck in a skull in the dark. It relies on messages it gets through your senses and acts accordingly to protect you, even if there is a more sophisticated part of you that has no fear of exercise and wants to be out skiing. The primitive brain wins out in this case by ramping up the symptoms. And then there is more fear and more symptoms.

You have to dig deeper and look at 'fear' in a different way. Was there any other stress in your life that might have made this protective mechanism be oversensitive at this point in your life? This doesn't have to be any big trauma, it seems to happen when there is minor work stress or just you get a virus, in some cases. Could anything small have tipped your brain into being overprotective, even if you didn't want that to happen?

 

First of all: the lack of scientific studies means that you can’t claim that their interventions are effective for pwME/CFS in general. I’m no saying you do that (I honestly can’t remember), but they certainly do.

Secondly (and related to you point below), these theories have been around for ages. Somatic tracking was created by Levine, but is heavily based on Reich and Gindler which again are inspired by Freud, etc. If the entirety of the community hasn’t been able to produce a single study that can prove their theories in over a century - what makes you believe that future studies will? (Hint: they won’t because their theories can’t be falsified so they can’t be proven)

What do you do with the thousands or even houndreds of thousands of lived anecdotes of harm or no effect from mind body approaches? Do you not have to put at least equal weight on those? Which way does the scale tip?

To be clear: I say houndreds of thousands because somatic tracking has been around for ages and the biopsychosocial approach to ME/CFS has dominated the public health sector for decades. Pretty much everyone has tried some version of it.

 

When do you stop nudging someone to get them to see if they missed something?

When do you know that it didn’t work for them?

 

See, this is where you’ve lost me.

What is the scientific causal evidence for this description of how the brain works?

What about the underlying assumptions - can they be proven?

 

Based on that theory ( which I do not think is correct) if you pushed through the symptoms initially you should see that there was no need to rest after all and the symptoms would just disappear. This is what Paul Garner says and what most of the brain retraining work entails.

 

Thank you. I think it's useful to at least get an idea of what we're actually talking about instead of using the ambiguous name (at least to me) brain retraining. So here's an attempt to summarize the specifics based on what you've said:

Brain retraining includes learning about the effect of fear on the brain. It also includes doing activities that promote relaxation/calmness, such as journaling or being in nature, which are most helpful when one has the above understanding of neuroscience. Thirdly, it includes meditatively focusing on one's symptoms with a mindset of curiosity.

I assume it includes other aspects and is hard to relate in full in a short post, but would you say that's a fairly accurate description of brain retraining in a few sentences, or would you change/add anything?

Interestingly, I instinctively often do something along the lines of the "somatic tracking" you describe. I have anxiety that runs away with any minor worry, so I sometimes try to focus on something else to not catastrophize. The easiest thing to focus on is the constant anxious feeling in my chest, since it's so prominent. Much easier than trying to focus "past" that big glaring sensation at something like my breath. And I have noticed the focus sometimes naturally "jumping around" to other symptoms or body parts that want attention.

While it's useful for keeping my thoughts calm in the moment, I haven't noticed any long term benefit in any area. I do have some hope that it's a valuable long term practice, based on some vague idea about how maybe constantly focusing on that visceral feeling of anxiety will help me to understand it. See more clearly every nook and cranny and the exact shape of that feeling, and maybe catch the exact moment it arises and eases away. It's mostly hopeful thinking, but might be useful after a long long time for my mental health.

But after doing this for a while, I can safely say I don't think it has or expect it to cause any substantial improvement in my ME/CFS. Still feels like I get hit by a train if I just go to the grocery store. Still feel the consequences of the activities I am too bored not to do. I suppose it's possible it could help if I also do the other activities you mentioned (though I think I already do calming activities like journaling, sitting outside looking at nature), but it feels very unlikely that something like learning what happens in the brain from fear would help (although I'm already reading a neuroscience textbook, so maybe I'll hit the trifecta by accident).

 

But we've got plenty of CBT trials being done for ME/CFS. So why would there be an uproar that prevents even a single brain retraining study but not CBT?

 

Then put the evidence forward. If Alan Gordon said he had Me/cfs then that is a flat out lie. His description of it from a video I saw was of ‘back pain with fatigue’. I mean if that is having what most of us have on this forum call me/cfs then a solution will never be found.

 

Not to mention for long covid!

 

I've been getting out in nature regularly and observing and surveying wildlife for the entire 49 years I've been ill, and can report that it doesn't help. Not unpredictably, being out in nature gives you PEM, so not unpredictably, you feel considerably worse afterwards.

Never having suffered from generalised anxiety—doesn't help.

Never being phobic about activity, to a point approaching self-destructiveness—doesn't help.

If what @forestglip outlines really is the approach, all it tells me that people propagating it haven't understood the first sentence of the book when it comes to ME/CFS. I'm not convinced some of them* have even thought about borrowing it from the library yet, let alone actually opening it.


* I'm not referring to anyone who's posted here, of course. They didn't think this nonsense up and it isn't their fault.

 

I see where we might be finding confusion / cross purposes ...

can I ask do you have ME/CFS

or/and do/did you have another condition that is fear of exercise?

And when you are talking are you talking about ME/CFS or the opposite condition, that is fear of exercise despite it [exertion] actually improving and not harming health long-term, and/or supposed imagined symptoms that improved long-term by pretending they are not there?

 

indeed. Claim it is thousands recovered but at best a few actual 'testimonials' (in commas as many - of the ones posted, because there aren't many anyway - don't follow the normal etiquette regarding these)