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

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As a recovered person I'm really confused to read this here. This is not correct. I'm sure there are doctors who think this but if they do, they're a bit embarrassingly out of date. This is not the current understanding offered by the psycho-behavioural approach.

The current neuroscientific understanding of these symptoms is that they are the brain trying to protect the person from harm based on the best available information the senses offer it. That can be real or perceived harm. 'Perceived' harm because childhood trauma can lead to the brain being oversensitive to threats in the environment. The symptoms occur as a way of removing someone from the environment and thus keeping them 'safe.' Rumination can indeed play a small part in symptoms persisting just because they teach the brain the person isn't safe on some level. You feel horrible, you have all the understandable worry that comes along with being unwell and the end result is the brain is constantly being taught in a loop that there is danger. It's not literally that the patient is ruminating on non-existent symptoms. The symptoms are very real. I don't know much about the LP to be honest, but my basic understanding is that it tries to teach the brain it is safe and can drop the symptoms just as brain retraining courses do. Including the one that got me better after years of being really ill.

Mats Lekander writes well about this in 'The Inflamed Feeling.' Have you read it? If not, it is worth looking at to see what it is you're actually disagreeing with in 2025. The book The Immune Mind also explores this topic. They have nothing to do with any type of hypochondriasis state, nor do they deny the existence of real physical symptoms. They explore how chronic symptoms stem from evolution and a protective mechanism gone a bit wrong.

 

I just read the blurb on Google and it looks like straight out pseudoscience.
I can't remember whether I have come across Lekander's name before but it has never cropped up in the context of ME/CFS forums before that I am aware of. His ideas about the brain and the immune system look like empty speculation to me - as an immunologist. And I am not aware that these ideas are widespread amongst psychobehavioural therapists in the UK at least.

The basic problem with the psychobehavioural approach is that nobody so far has provided any reliable evidence that it makes any sense or that using it does any good. the trials that there are are essentially negative. Maybe some psychologists have moved over to this sort of analysis but then psychological analysis has always varied widely. It is a long way from Wessely saying that having ME is just the idea of having ME. And the vast majority of practitioners treating patients still have the simple idea that they just need to change false beliefs. The stuff you mention would to most people either be incomprehensible or, if they knew what the words meant, implausible. So I am not sure one should expect anybody much to be made better by it. People get better for all sorts of reasons. We have no reason to think it has anything to do with psychological theory or therapy.

 

You've read the blurb and it looks like pseudoscience? Is that where you are leaving this? What about 'The Immune Mind?' Because you are entitled to not read either book but in my very personal opinion, that would be a big mistake and a missed opportunity for your own understanding. Both are really fascinating reads and people on the other side to you in this debate have read them.

'It is a long way from Wessely saying that having ME is just the idea of having ME.'

Well, yes. Things have moved on. That's a good thing. All sorts of new names are cropping up in this area and many of those researchers are making a really interesting contribution to things and stand to do so to an even greater degree in the next ten years. Their ideas don't shame anyone but they do nicely explain all the weird variables you find in M.E. even if more research is needed.

And I am not aware that these ideas are widespread amongst psychobehavioural therapists in the UK at least.

I don't really feel able to answer this but therapists don't always keep up with research, I think. There is the understanding therapists have and the cutting edge of BPS theory and research. That's what the books I'm recommending cover.

 

'Nicely explaining' isn't science. You need to be able to test that your nice explanation has validity.
There is no useful testing in BPS theory. Nothing is 'cutting edge'. It may come as a surprise to you that this field is completely empty of any validation. It came as quite a surprise to me when I first looked into it ten years ago - that people should have so little disregard for whether their theories were valid or not. It is complete make-believe. The recent 'cutting edge' stuff from people like Mark Edwards on 'Bayesian' analysis in functional neurological disorder is frankly incoherent - it gives the opposite prediction to what it is said to.

No, one does not need to read beyond the blurb. This is not biological science. I am intrigues as to why you should think it is.

 

Lekander is also a prominent member of a peculiarly Scandinavian bullshit group known as the Oslo Consortium and has written on the non-existent concept of Exhaustion Disorder. I have looked through his PubMed publications. It is paradigmatic make-believe.

 

‘More research is needed’ is doing a lot of heavy lifting here.

But I’d love to read the current research that you believe substantiates your claims.

 

*This is not biological science. I am intrigued as to why you should think it is*

Because of my lived experience of recovery, is a large part of my answer. I used brain retraining, I wanted to know more about the science that backed it up and have read enough to more fully understand my own recovery through these books. That isn't acceptable to people here and I understand that. There is very little at the moment in published research to test the validity of these ideas. It's frustrating (to say the least) and obviously that is a gap that needs filling.

What I want to say is that you need to read these books. I can't force you but you are wrong to not do so. My reason is this: I am a member of Facebook recovery groups. Big deal, you could say. Except they have thousands of people in them. The one I am more active in right now has over 12,000 people in it with either Long Covid and M.E. Lots of MCAS and POTS in there too. I think they're mostly Americans but many people from the UK too. These books are repeatedly recommended in them. What I am seeing week in, week out is people reporting they are improving or fully recovering and these books are part of that happening. I am not arguing that that counts as evidence that will change your minds. But you are here debating a very debilitating illness that there appear to be no answers for and yet elsewhere people are recovering in large numbers. If you really want to stay up to date in this debate it would be good to know comprehensive details of that, no? It's not just that FB group. Raelan's YT channel is getting thousands upon thousands of views and the comments under the videos again show large numbers of people recovering based on the hypothesis in these books.

Your understanding of the BPS argument is that people are ruminating on non-existent or minor symptoms. I'm trying to tell you that is an out of date idea and not linked to current understanding. You are going to risk not being able to properly contribute to this debate if you double down on this, even if that feels crazy to you given many people here are living and breathing this illness.

Refusing to read a book and challenge your own thinking is generally termed ideology in most spheres, no?

I will finish with a question for you. Charles Shepherd has mild M.E, I believe. He has also written publicly in the press that he walks his dog daily. And he must work many long hours for the MEA. Do you have an explanation as to why he hasn't then deteriorated to being moderately or severely unwell? He must have PEM, right? And walking daily is exertion. These books explain why this might be possible and why others might deteriorate horribly if they tried to do this level of exercise.

 

I believe you answered your own question here. There is nothing to know the comprehensive details about because there is no research.

If you build an unvalidated theory upon unvalidated assumptions upon even more unvalidated assumptions, then you really can’t expect anyone to engage with your theory before you start proving your assumptions.

Ideology is to hold a set of beliefs that are not based on certain knowledge. Which is what BPS is.

Refusing to read a book about an ideology is a perfectly reasonable view to have.

 

Can you elaborate on what you mean by the bolded sentence? What does ‘living and breathing this illness’ mean?

 

There is actually very solid research showing that the ideas that led up to the PACE trial were invalid. (The PACE trial itself, as properly analysed by Wilshire et al. and others.) And the same people who are gathering as Recovery Norge and the Oslo Consortium are fans of PACE, and write articles in vociferous support of PACE. So clearly they don't understand what we already know.

Theories may have changed but this is a misconception:

Nobody has ever had that idea as far as I know. Of course the symptoms are 'real'. This is another double-speak argument the BPS people love. So I was never going to 'double down' on it!!

Why should I read a book when I can see from a brief search that it is unvalidated pseudoscience? I am the book review editor for the Journal of Consciousness Studies, so I read several books a week checking to see if they merit review. I am an old hand at assessing books. And they are books about the way the mind works. The BPS people haven't a clue how minds work - that is the central problem in all this.

And of course there will be thousands of people on social media claiming to be cured in the USA. Do you honestly think that in the current state of the world that fashionable ways of thinking in the USA are well grounded? We live in a cesspit of disinformation, as I am sure you are aware.

Sorry to be blunt but this is all garbage. I am very glad you are better. But please do not preach voodoo to a group of people who really do take this illness seriously, write grant applications and papers, do research, sit on committees, advocate for better research, tirelessly and on the basis of careful analysis of evidence.

 

Charles is a good friend who I have known well for over ten years. Your comment seems to indicate that you have no real understanding of the dynamic of this illness. Charles's health has been reasonably stable for a long time now. That is very common for people with long term ME/CFS and a moderate amount of activity need not trigger PEM. Presumably you have not read the threads here dealing with the complexity of the dynamics - or the publications members have put out on this?

 

I don’t think they only described one case. But it was a very flawed review to put it nicely.

 

I bought a Louise Hay book. Initially it was in the pile for the second hand book shop. Then I fished it out and put it in the recycling bin. I really didn't want anyone else to read it, ever.

There was a table at the back where she provided her view of the emotional reasons behind a load of diseases. The one for motor neuron disease/ALS was so horrific that I wanted it out of my house immediately (more below). I'm guessing it was this list, but MND/ALS is missing from this version:

https://thealterlife.com/article/emotional-causes-of-disease-by-louise-hay/

Parkinson's is there, though: "Fear and intense desire to control everything and everyone."

And Alzheimer's: "Desire to leave the planet. The inability to face Life as it is."

MS is missing from the version above, but appears in this version as "Mental rigidity, lack of emotional warmth, determined mindset, resistance to change."
https://authenticrebel.io/the-emoti...Wm3CZyEsTwQ5u6fSTumTOqOcIQwJMeGqQsLuhOtNpTHM_

Rheumatoid arthritis? "Rheumatoid arthritis can stem from feeling victimized, a lack of love, chronic bitterness, resentment, and criticism of authority."

According to LH, what I really need to do for my developing anaemia is repeat the affirmation "It is safe for me to experience joy in every area of my Life. I love Life." But I'm going to go ahead and have an iron infusion. You know, just in case the affirmation doesn't prevent the cardiac symptoms I got last time.

And this person with ALS has a bone to pick with Louise Hay:

You can read the whole thing here. It's pretty funny. https://carlamuses.blogspot.com/2008/06/you-can-heal-your-life-or-its-all-your.html

 

This is exactly the kind of pseudoscientific stuff the founders of the psychosomatic movement pushed in the early 20th century (except with far more religious undertones).

Their work was basically a sort of astrology of trying to link personalities to all type of illnesses. Really disturbing.

(cancer for the melancholic, heart disease for the anxious etc.)