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

@UkPoster sorry if you've explained this already, but why do you think there has not been a rigorous trial demonstrating efficacy of brain retraining for ME/CFS? It's straightforward to understand the basic ideas for good trial design, as members discussed in response to your question about it. Maybe for a condition like pain, objective outcomes become a bit harder to incorporate, but with ME/CFS, we're a bit "lucky" that the main effects include being bedbound, not working, and not walking, and thus improvement should show up clearly in some or all of these quantifiable metrics. So why not use them?

For years, I was sort of obsessed with the ketogenic diet/carnivore diet idea. There were so many remarkable stories online of recovery from all sorts of conditions, including some similar to what I have. And I would frequently seek out these stories to get more hope that it really works. For years I ate as low carb as I could handle, sometimes going a month or two on just meat until I couldn't fight the hunger for non-meat foods. However, I only felt worse, certainly not better. But I always thought, it seems to help so many other people, and if it works, it'll be so amazing, so I should just keep trying in case it does work.

One of the things that helped finally snap me out of it was this Twitter post, which basically said that if the low carb ideas were anywhere near as promising as the advocates make them out to be, it'd be obvious.
If low carb really has the metabolic advantages proposed by the Carbohydrate-Insulin Model, there would be no need to torture data, bully scientists, dismiss studies under wild conspiratorial speculation, hold research to bizarre double standards of criticism based on whether it supports or invalidates a low-carb advantage, or position legitimate scientists as “enemies” simply because they produced data that contradicts the CIM.

The evidence would show up readily, leave echoes in both observational and clinical studies, and not be such a wild goose chase to find.
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What I mostly saw was debates about mechanism and debates about whether the very limited efficacy evidence was actually valid or not. What I should have seen, if people's recovery was really this common and obvious, was clinical trials left and right convincingly showing people being cured of these conditions.

I can't say with certainty that brain retraining doesn't work. Maybe it does help a small proportion of people. But you say you think it's very likely that brain retraining can cure most people with ME/CFS:
UkPoster said:
c in most cases, I think its very likely, yes. I feel that because of the huge number of people this works for and who report feeling their life has changed for the better for finding this work.
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There are millions of people with ME/CFS. So I just go back to the above, and think, if it's true that this is such an amazing treatment, then it should be obvious in the scientific evidence. You say you've personally heard of this helping thousands of people. Why, then, don't the scientists who've come across the numerous recoveries seem to understand that they could make a massive contribution to the world by demonstrating that this really works with a rigorous trial focused on objective outcomes?
 
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UkPoster said:
I don't think tries to be research of the type you are looking for though. I think it's one piece of work that is of interest given multiple people are sharing similar things which have been collected as themes. It still has use.
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I'm sorry, what use does it have? It's based on recovery stories on a website of someone who sells brain retraining. many of whom are also sellers. it's not a scientific study, if anything it's a sort of very poor quality market research among a preselected sample designed to sell a product. Honestly, if you wanted to buy something that costs a lot and promises to change your life, whether it's therapy, or a holiday of a lifetime or a new house, would you trust the market research of a company based only on a few 'satisfied customers', most of whom are sales people for the product?
UkPoster said:
I've explained above.

Why do people struggle to leave horribly abusive relationships? Because change can be very destabilising and scary. Does it really not make sense to you that someone who has been ill for years, has never worked, has online friends, has their (relatively) reliable benefit payments and a routine that is very familiar, may find it a bit scary to suddenly be recovered?

Many of these people have no cv, no work experience, no contacts, all their friends are in the M.E world, they may have no qualifications in some cases.

I can't see how it doesn't sense to you that that would be incredibly overwhelming for many. Add in possible neurodivergence and medical trauma. Recovery takes a lot of courage.
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Please avoid using analogies with people suffering domestic abuse. They are inappropriate and offensive to people suffering domestic abuse. Please stick with the subject.

Of course it can be daunting to face the world again when you have been very ill and unable to participate in the outside world for many years. You say you have many examples. How long did you follow them up? Did they really recover and then go on pretending to be ill for decades so as not to face the world? Did you or the others in the group suggest they seek support for their anxiety and the practicalities? How can you know if this is the real reason for their hesitation about continuing the 'treatment'?
 
forestglip said:
Why, then, don't the scientists who've come across the numerous recoveries seem to understand that they could make a massive contribution to the world by demonstrating that this really works with a rigorous trial focused on objective outcomes?
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Adding onto this: Why, then, did the people running the DNRS study from McMaster design a study too biased to be able to be peer-reviewed and published? Why did they not try again with better trial design? And why would DNRS present an unpublished study as evidence their treatment works? It takes someone more knowledgeable about academia to recognize it’s unpublished and therefore low quality. Not everyone is able to identify that, so it preys on people’s lack of scientific knowledge but simultaneous desire for something evidence-based.
 
UkPoster said:
But once you're someone doing brain retraining, there are lots of places people are talking privately. Whatsapp, FB, private groups, there are in person groups now in the States and the UK too, many run for free by other people who recovered by the way.
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Thanks for your reply.

I'm familiar with these groups as I've done "recovery programs" in the past. A lot of people delude themselves into thinking they are better. Some people want to be teacher's pet and are synchophantic to the leader and overestimate the program's effect.

Then you have the background groups that *you* may not be aware of, where disgruntled students gather to dissect their gaslighting and disappointing experience, maybe even to plan legal action against these people claiming to cure diseases. I've been a member of those groups, too.

UkPoster said:
The vast majority will not share publicly now or ever. A big part of that is because they are sharing personal things and don't want to be sneered at. 'You didn't have M.E, you had mental health problems' is a common one. 'You were only ill x months is another' (and that's wrong, many have been ill for decades).
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This "recovered people are afraid to speak up" argument does not hold water.

Sure, many people are afraid of a little pushback. But if I recovered from any of these programs, I would walk through coals to make people aware that at least it worked for me, and maybe they should have an open mind too. If I were healed, some snark on ME groups would be the last thing I would worry about! LOL! It's preposterous to think that allllll of these recovered people have the same thought process, that no one is brave enough to face the meanies on ME groups. (Also, you are here, making your case despite the pushback. Not everyone scurries away from resistance.)

What could it possibly matter to a fully recovered person if someone "attached to illness identity" that the programs already dehumanize, accuses you of mental illness? OMG, you're healed! Go for a jog, hang out with friends, make money at your full time job. Brush it off.

If I were healed, it would be unethical to not at least state what helped. Make your post, then get out. If you're healthy, you can take some criticism. Yet in the forums I'm active in, I see maybe 1 such recovery story every couple years. I just find these statistics dubious, if the denominator is say 500-1000 healed patients every two years, that only 1/500 or 1/1000 or so has the personality traits I do and would brave the lion's den to merely state what helped out of a sense of basic, bottom-rung standard human decency and compassion. Surely not all those people have such fragile egos.
 
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dave30th said:
d


Is this an assumption that it was too biased to be peer-reviewed and pubilshed, or do you know that it was submitted and rejected because of bias?
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Apologies, it’s just an assumption. I remember someone on another group finding that it was presented at a conference but nothing more. I don’t know how they found that out. Looking up the paper on Google scholar, I remember finding two papers that cited it with the caveat that it was unpublished. I don’t have the energy to find that now.
 
UkPoster said:
Because change can be very destabilising and scary. Does it really not make sense to you that someone who has been ill for years, has never worked, has online friends, has their (relatively) reliable benefit payments and a routine that is very familiar, may find it a bit scary to suddenly be recovered?
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Hi @UkPoster,

Thank you for being here and trying to provide your perception on BR.
Also thank you for your time trying to answer every question, it should be time consuming. Deep inside of me I wish what you say its true, however you sound very confusing or confused.

Above you say "change can be very destabilising and scary", but what causes the initial change? i.e. from healthy to sick?

its a

1) mental problem? its anxiety, deppresion? why brain get "scared" initialy and makes you homebound or bedbound or being unable to have a hot shower e.g.? Do us , PwME, that dont want to get better, want to get sick in order to not get better? ( this sound like a Tongue Twister I know)

or is a

2) viral/bacterial or traumatic event that shift the brain to this conditions?

If is the first are you a proponent of McEvedy and Beard theory that called ME/CFS a case of mass hysteria? Do you consider this a mental health problem?

If its the second reason how BR could provide the fixing tool to a biological mechanism? do you or your peer group have a unified methodology/therapy proccess achieving this? if not do you and your peers plan to establish a concrete treatment scientifically proved line considering the vast amount of money invested in the BPS theory (which BR has its roots)?
Or you consider ME/CS a basket of different conditions thus requiring diferent treatment lines?

Last question. If this, circa 71.2 million, PwME around the world they dont want to get really better why you want to push them getting better? what the rationale behind considering the lack of money-making purpose as you say? Do you and your peers consider your self a savior and liberator figure, some type of divine grace? or its just a pure altrustic act?

p.s. Sorry for extending my queries so long, I know there is a lot but the Brain Retraining community fascinates me with its deep knowledge and method intepretation. Hope having you here for a long time.
 
UkPoster said:
It's all very easy to say 'people want to recover.' Yes, I believe you. But it's also true that actual recovery feels too much for some people, they don't have the support in place to feel they can face it. There are definite advantages to continuing your life where you know how to live it, even if it comes at a cost with feeling physically ill.
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This has to be one of the most insulting things I’ve ever read.

Having to figure out the logistics and finding meaning when being healthy would be a luxury compared to having to live this nightmare 24/7. Do you have any idea how it is to be severely disabled for years?
 
Utsikt said:
This has to be one of the most insulting things I’ve ever read.

Having to figure out the logistics and finding meaning when being healthy would be a luxury compared to having to live this nightmare 24/7. Do you have any idea how it is to be severely disabled for years?
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I totally agree, thank you for saying this.

I have heard quite often the comparison between depression and ME/CFS that if you ask a person with depression what they would like to be able to do, someone with depression is likely to struggle to answer, whereas someone with ME/CFS has a long list of thing they are desperate to get on with.

Sure, as I said earlier, if someone has been out of circulation for years it can take a while to sort out their new life and get on with it if they recover, but to suggest some of us are too scared to get better is deeply insulting and just plain wrong.
 
UkPoster said:
There are definite advantages to continuing your life where you know how to live it, even if it comes at a cost with feeling physically ill
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Yes, for example, carrying on with paint restoration work at €250 a day.
UkPoster said:
Because brain retraining isn't like religion, there are so many scientists/neuroscientists/doctors/psychologists etc etc who are on board with it.
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What does ‘on board’ mean? If it only works if you believe in it, what is it then? My father, despite his belief that 2+2=5, responded to the treatments just like everyone else. That’s the difference: with science, we’re talking about inclusion and universalism. The question of belief doesn’t come into it.
UkPoster said:
The claim isn't that people can magically get better without support
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Well, no – otherwise you wouldn’t have anything to do in.
 
Trish said:
Sure, as I said earlier, if someone has been out of circulation for years it can take a while to sort out their new life and get on with it if they recover, but to suggest some of us are too scared to get better is deeply insulting and just plain wrong.
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And it’s not like you couldn’t just keep what you’re doing now, just without the terrible symptoms. Lying on the sofa is better when healthy than when sick. There are no incentives to keeping the symptoms around.
 
UkPoster said:
Well you are welcome to wait for one and good luck to you because I firmly believe it isn't coming, sadly.
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What is your firm belief on this worth?
As in, what are the factors that have led you to conclude that there will never be a treatment or cure other than "brain retraining"?
Is your firm belief on this the result of a comprehensive review of the state of ME research?
 
I've been reading through this thread over the last 2 day after almost a year away from the forum. This has been due to the fact that I am now very severe ME following my attempt to follow through with a claim via the Department of Health and Social Services Ombudsman. Cognitively it exhausted me. I shan't be around for long on here as I am too unwell. But had to inject a few facts in light of this afternoon's events for @UkPoster

I've been wondering what your motive was. You seem to be an interested party but no-one can elicit what that interest is.

Then this happened at 2.53pm UK time today. JullyBabyKid replied to Trish's question of UKPoster "What Research".

JellyBabyKid said:
I think they mean this;

Thread ''Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths]' https://s4me.info/threads/recovery-is-possible-lessons-in-‘me-cfs’-recovery-from-youtube-goldsmiths.38843/
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I saw this approximately 10 mins after it was posted and checked out the linked thread which has a start date of 6 June 2024. in the first post on that thread was a twitter post which I recall being a screenshot or something of the detail of the research on Goldsmiths. It referred to "politically vital" research. This wording was picked twice on that page and the following page. When I returned to the twitter post at 4.20 p.m this afternoon the twitter link was broken showing as either deleted or (now) private after having sat there for 2 years.

Thankfully Trish had the foresight, no doubt based on long previouss experience, to include the text in her post at the top of page 2 of that thread.

People of considerable influence are clearly watching this discussion.

So, for them, and for UKPoster in case they are unaware why these words would be so problematic. Here are some salient facts:

1. I won't mention PACE or the NICE 298 October 2021 Guideline but will start with the Anomalies paper 2023 and the creation of the Oslo Consortium at the end of that year.

2. 3 October 2021 Maeve Boothby O'Neill died. Treated under the 2007 NICE Guideline

3. 7 October 2024 Regulation 28 Prevention of Future Deaths Report on Maeve Boothby-O0Neill.

4. 15 July 2025 Regulation 28 Prevention of Future Deaths Report on Sarah Lewis who died 8 August 2024.

5. Long awaited publication of the Government's ME/CFS Delivery Plan 22 July 2025.

This is why in June 2024, I would suggest, Goldsmiths may feel that it was "politically vital".

These are among the many serious reasons this group interrogates the science and that which purports to be.

Edit: I see this morning 28 Aug that the tweet link is now working. Must have been a temporary tech problem.
 
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UkPoster said:
Am I meant to be interpreting this as a warning? Tone is hard to judge online.
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A warning? Not at all. What kind of "warning" could I be making?? I mean, there are obviously no repercussions implied. I'm sorry if it came across that way. I agree tone is hard to judge online. It's just a point or a request, given that you have no knowledge of the people I've talked to so don't really have a basis for making an assumption about them.
 
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UkPoster said:
And why wouldn't they? Some women in long term abusive relationships choose to stay because humans find change hard. There are so many unknowns to face. If someone has been ill for 10 years, the reality of recovery has challenges. If you lose your benefits quickly, how do you plan on paying the bills? Who is going to employ you?
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This passage might be a key to understanding UkPoster .

Maybe, MAYBE the above can be true for some people with burnout, anxiety, depression and related conditions. (I'm not sure; I don't have much experience with that.)

That makes me think that the recovered people that UkPoster claims to know about had such conditions. This would perfectly explain UkPoster's inability to understand ME/CFS and their insistence that there must be emotional trauma or fear of activity and so on.

@UkPoster: You must understand that ME/CFS is not that. That's the reason you face so much opposition on this forum.

I myself am fortunate enough to be able to work 25 % remotely on a job which I enjoy, am good at, feel is meaningful, with people I like, in a sector with lots of demand. If I suddenly recovered I could start working full-time the next day.
 
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