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

Sorry, I realised I missed this. I acknowledge that many come out of doing the LP feeling worse. I am not a fan of it. These things aren't black and white, not all brain retraining programmes are created equal. I don't suggest it if people ask what to try. With that said, I think I now see why it might work for them and have seen other recovered people try to make sense of it. There was a girl in my town when I was first ill who was tube fed and a severe sufferer who recovered fully using the LP. I was so confused as it looked like quackery to me all the time I was ill. Now I'd say it is a type of brain retraining and works along the same lines other programmes do, it's just many people need far more in-depth theory to get their head around how recovery works.

In the brain retraining world, people getting worse symptoms following something like the LP doesn't mean any long term physical harm is done to the body. It's unpleasant at best and seriously distressing at worst, but it's not damaging the physical body and they still have the potential to improve or recover if they find the right programme for them (in many cases, obviously not all). I appreciate that is a big thing to get your head around. It does matter if someone comes away having deteriorated, I'm not saying it doesn't and I hate seeing stories where people have got worse, it's just there is no actual irreversible harm to physical health being done (the same as how someone can have a really hideous painful migraine lasting days and then it goes and they don't have any actual brain damage. Migraines being something brain retraining is excellent at reducing or getting rid of altogether, too). And that ties in with how you can get blood tests when you are feeling terrible with M.E and they don't show anything. And why I could have M.E one month and be totally unable to exercise and feel horribly ill and then go through the exercises I used and suddenly feel totally well again, albeit I needed to rebuild my fitness.

 

My therapy encompassed both.

Because I wanted desperately to get better, I really truly tried what you are describing here. I tried to find connections between when my symptoms worsened and that unsafe feeling (literally the word "unsafe" came up a lot from my therapist). I did deep dives on feelings of hypervigilance--when was I feeling it most, what triggered it, and how my body responded. Addressing that issue actually necessitated working on prior trauma, because that's where the stress response was primed. I needed to understand why I felt unsafe before I could try to tie together my symptoms to feeling unsafe.

What became obvious to both me and my therapist over time was just that there was no connection. Even if that type of stress was involved in predisposing me to my illness, it could not explain any of the patterns of how my symptoms operated in following years of my illness. I have done a massive amount of work underdoing that hypervigilance response and rewiring how safe I feel in my day to day life. But even though I really really really tried to see how it was driving my symptoms, it just doesn't. I'd have to keep gaslighting myself to see a connection that isn't there. Thankfully I had a therapist who was able to recognize that he might be wrong and stopped me from doing that after a while.

Again, i believe that what you say is true for you. But as I said in my long previous post, it's not true for all. And if it's not true for all, it's extremely unethical to keep insisting that others just haven't reached the "right" lightbulb moment yet.

That's why many of us see no difference between what you're saying and previous iterations of the BPS model. Those previous versions about false illness beliefs probably DID work for some group of people, even if it wasn't your "unsafe/hypervigilance" model. It worked for people whose symptoms were probably tied to a different dynamic than yours or mine.

But if any psychological approach only works for some, and you have no way to distinguish ahead of time who it works for, then you can ALWAYS claim that it's not working because people just haven't done the right work yet.

That's when, in the worst cases, you end up driving people to suicide because they've heard over and over and over that they just need to keep working at it and maybe they'll finally get their life back, despite over a decade of trying and failing because their illness actually was not being maintained by whatever state of mind you're pointing at.

 

I just had a look at his book "Living with ME", and sections 2.2 (Self help) and 2.3 (Mind and Body) and 2.4 (Alternative and complementary approaches) give a lot of info about things that patients find helpful. Some of it seems useful, some is based on unproven or pseudoscientific theories. So I would guess that he used some of this advice himself, and that helped him improve.

 

It's important to understand that no one really knows whether someone getting worse sympyoms after the LP is due to physical harm or not but the absolutely crucial point is that irrespective of this if someone's baseline is seriously lowered as a result of the LP and they no longer have enough energy to do the necessary activities for day to day living, doctor appointments etc without crashing then the chances of any future improvement are very low and the LP has done serious harm.

 

You can't say any specific thing that is done because "it is a process you need to follow over time and its best to build your understanding up in layers"? In other words, am I understanding right that you don't want it known what someone actually does in brain retraining before a person is ready because you think it'd have more benefit to learn it the right way?

It is really strange to me that someone has to take a six week course to even know what the treatment is.

Can you say anything specific at all? Like is it focusing on your breath? Telling yourself "exercise won't hurt me" while you exercise? Yelling "stop" at a piece of paper? "Brain retraining" means next to nothing to me.

I saw the Raeglan person who runs the big Facebook group recommends Primal Trust. I just went through that website and have no idea what they are selling. It's like they tasked someone with making a website for the program but didn't tell that person any details of what the program actually is, other than a few buzz words like "somatic healing" and "vagus nerve toning" so the person just used vague wording that could refer to anything.

I do have to spend six weeks of my time and energy though, and apparently that's just to find out what I'd be doing for months after that. With zero RCTs to back it up, it doesn't seem worth it to me.

 

I used to be a member of Raelan's group, but I left after getting into an argument with one of the moderators. Basically I said that brain retraining is a mixture of science and pseudoscience. That really offended her, as she is a "neuroplasticity coach", even though I didn't mention any programme specifically.

There was also a large exodus of people, including moderators, from Raelan's group after Miguel Bautista became a moderator. (He's the guy who charges $6k a year for his cfs recovery programme). I just had a look and I don't see him listed as a moderator any more, so perhaps they removed him. Anyway, there's just a bit too much drama in that group for my liking.

A better group is if you're interested in looking into brain retratining is: https://www.facebook.com/groups/1343567669676284 (CFS/Long Covid/Post Viral Mindbody Healing). It seems to be calmer and better managed. The only minor irritation is that you're not allowed to mention any symptom, so people get around that rule by using anx**** and similar. I understand the reason for that rule, but don't agree with it.

 

I’m sorry, but this is really not how a discussion works. You can’t just say ‘you’re wrong, you have to read up on it to understand it yourself’.

I believe they asked for the evidence, not your or anyone else’s assessment of it. Let’s talk about the facts, not opinion.

The discussion about MINIRICO has been in relation to the theoretical underpinnings of MBRT and the study design. Both have fatal flaws that will render any result meaningless. That is not something anyone has decided as an opinion, it is a direct logical consequence of the choices made by the researchers.

Do you accept that all BPS-approaches to ME/CFS has caused a great deal of harm to patients? How would you feel if someone decided to try a BPS approach based on your testimony and they became worse as a result? Can you live with having influenced them to try it? Do you accept that you would have caused harm as a consequence?

This is a straw man. There are countless threads here where members discuss the scientific merit of the current branding. It is also not completely incorrect. Just because your BPS people didn’t say this anymore, doesn’t mean that others don’t.

 

That's a bit of an exaggeration. There are good and bad BPS studies, just as there are with biomedical ones. I think I've seen more terribly bad biomedical ME/CFS studies than bad BPS ones. Sometimes this forum uses the word BPS as a pejorative, which doesn't really make sense. We have sufficient evidence to say for certain that physiology can affect psychology (e.g. sickness behaviour), and that psychology can affect physiology (e.g. stress hormones which affect the immune system). That's not to say there aren't dubious and unproven theories floating around, and "brain retraining" certainly seems to be a mixture of science and pseudoscience.

 

I don't think it's helpful to be calling it a "bullshit group". We should be discussing the evidence, not making ad hominem attacks.

What makes Exhaustion Disorder any more non-existent than ME/CFS? They are both just diagnoses based on somewhat arbitrary criteria.

 

Yeah, most of these people are a bit irritating, with their mix of science and handwaving.

Jan Rothney (author of "Breaking Free") "lectured in Health and Social Care, and been trained in behaviour therapy, counselling skills and stress management", so she does seem to have some proper credentials. Her book does seem to be the most sensible that I have found on brain retraining, and I usually recommend it to anyone who is looking at it. Her book and course are both very reasonably priced. I don't have any financial interest in it, or anything else related to ME/CFS, I just thought it was useful.

 

You need to be careful looking at a single study. For example, looking at IFN-gamma, 82% of studies show no difference to controls, 12% show it higher, and 6% show it lower. (See https://www.researchgate.net/profil...circulating-cytokines-A-systematic-review.pdf). Overall, there aren't really any well replicated abnormalities.

 

Yes, but this doesn’t mean anything more.

Again, this dosn’t mean anything more.

This is the problem with this approach: it takes vague connections and builds upon then with speculations and claims that their theory is correct. No more proofs neded.

Feel free to join the discussion here:
https://www.s4me.info/threads/chron...23-the-oslo-chronic-fatigue-consortium.35388/

 

I’m aware! I promise I’ve done deep dives on much of this for my PhD research—I was just pulling two examples off the top of my head to show that abnormalities in ME/CFS, though not always consistent, do scale with severity.

I agree that especially for cytokines, single analytes are quite inconsistent across studies.

 

I came across Alan Gordon and saw he had recovered from M.E along with pain.

Now it all makes sense.

 

No, I think that is an overgeneralisation that seems to happen quite often here. Every "BPS" study posted here seems to get shot down before even looking at it. (Yes, I know that's an overgeneralisation as well, but that's the impression that I get, and it puts a lot of people off joining the forum, including myself).

 

I had a look at the first page of that discussion, but the first page was almost entirely ad hominem attacks rather than a discussion of the science.

 

I'm not the OP here, but I'll reply anyway. I think we should assume good faith, i.e. assume that everyone posting in this forum is aware of the problems with inappropriate treatment. Also, it's certainly not true to say that "all BPS-approaches to ME/CFS has caused a great deal of harm to patients". You're using a strawman here. The OP was not advocating anything harmful from what I can tell.

 

Wilshire et al. reanalysed the PACE trial using the original protocol, and (unsurprisingly) got different results. I didn't see anywhere in their study where they showed the the ideas leading up to the PACE trial were invalid, but if I've missed it, let me know.