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

[UkPoster]

@UkPoster, I respect your wish to remain anonymous, however I remain very puzzled by your privileged access to hundreds or more people who have recovered as a result of brain retraining and to discussions with some who have failed to recover because they chose not to. You have said you are not involved in provision of brain training, and do not have a medical training, but surely if you wish us to take this highly unusual level of experience in a lay person seriously it would make sense for you to say in what capacity this was.

I am an ME/CFS patient of some thirty years standing with both a previous clinical and research background (not in ME/CFS), but am certainly not able to cite the stories of hundreds or more of people with ME/CFS, nor would I wish to generalise on my experience without also drawing on published surveys or research. Where I do want to raise a potential generalisation I ask others, for example it seems to be a trope in brain retraining recovery story that people diagnosed with ME/CFS are universally told by doctors in the UK that they are never going to recover, which is the opposite of my experience, I raised that question here and we undertook a poll of our membership, that indicated at least as far as our collective experience goes this is not the case.

It's as simple as I am in several FB groups and Whatsapp chats centred on brain retraining. There are a lot of people in them, talking about their experiences and asking for help. I've been in them for a while now, too. It adds up.

I don't know much about doctors saying you can't recover and am happy to take the results of your poll at face value, but there is definitely an issue that other patients tell you that and the M.E Association does. I've seen all sorts online of people saying 'only 5% recover.' It's a very strong message that comes through

 

[UkPoster]

I don't think of myself as lucky.
And more importantly - what relevance does how lucky I may or may not be have to the scientific validity of brain retraining?

Because it makes sense to say that for many, the idea of recovery is frightening and something they don't feel up to doing.

That may well not be a factor for you. For others it is. They say so.

 

[josepdelafuente]

Because it makes sense to say that for many, the idea of recovery is frightening and something they don't feel up to doing.

That may well not be a factor for you. For others it is. They say so.

Ok, do you have any evidence you can provide in support of your claim that there are many people for whom the idea of recovery is frightening, and who don't feel "up to" (whatever that means) recovering?

Again, I'm not sure what "not feeling up to recovering" would mean.
Do you suggest that that is a phenomenon in all illnesses?
For example, are there people who don't feel "up to" recovering from cancer and therefore don't?

Or is this feature unique to ME patients, in your estimation?

 

[josepdelafuente]

Unfortunately like it or not, accepting these ideas is a key step in recovery.

Is there any evidence that supports this claim of yours?

 

[UkPoster]

I have been practicing somatic tracking with the chronic pain in my rib joint. So far, still here.. sometimes worse, sometimes better. Exactly as it was before I started somantic tracking.

As I said, I have also been practicing safety messages. My nervous system still thinks that there is a five alarm fire going off somewhere in the vicinity.

And my fatigue is much worse.

To be fair, I have been falling asleep a lot while trying to meditate, but I also practice breathwork via a breathing physio audio that I have done for the last 13 years, I stretch a little every morning and I've recently resumed journaling, and I am listening to a lot of this "psychoeducation". I can name names if you would like.

Still feel like I've been hit by a truck.

Edit to add: I am genuinely interested; what is the thing that I am missing here?

There are people you can reach out to and ask who are actually working in this area who would be really happy to help. It is likely better to ask them so they can fully understand your case. I think many have these kinds of questions and it really pays off to dig deeper and get help onboard, even for one or two sessions as it might then bring some relief!

 

[UkPoster]

Is there any evidence that supports this claim of yours?

I mean it came out as a key learning from the look at Raelan's work. But I know you've all decided that's junk research.

 

[josepdelafuente]

@UkPoster I'm interested in a treatment or cure that works regardless of my beliefs.
Like antibiotics for bacterial infections. I may not believe they will work, but they'll work.
Why should ME patients "accept" the idea that only a belief-based treatment is available to us?
Your suggestion that we might not like the idea doesn't somehow make it any more true.

 

[UkPoster]

Ok, do you have any evidence you can provide in support of your claim that there are many people for whom the idea of recovery is frightening, and who don't feel "up to" (whatever that means) recovering?

Again, I'm not sure what "not feeling up to recovering" would mean.
Do you suggest that that is a phenomenon in all illnesses?
For example, are there people who don't feel "up to" recovering from cancer and therefore don't?

Or is this feature unique to ME patients, in your estimation?

No I've already explained upthread, this is something I see people saying anecdotally and something people have said to me.

I think it may well be unique to M.E, I don't know, because how many other conditions have a straightforward pathway to full recovery, which brain retraining is proving to be for some. Cancer is very different and many people don't want chemo but the alternative is death. That sharpens the mind somewhat.

Not feeling up to recovering= undergoing a rapid positive change in your health and having the resources and the confidence to deal with that.

 

[josepdelafuente]

I mean it came out as a key learning from the look at Raelan's work. But I know you've all decided that's junk research.

Yes, unfortunately it doesn't meet the (rightfully very rigorous) standards necessary for research to be taken as evidence of effectiveness.

 

[UkPoster]

@UkPoster I'm interested in a treatment or cure that works regardless of my beliefs.
Like antibiotics for bacterial infections. I may not believe they will work, but they'll work.
Why should ME patients "accept" the idea that only a belief-based treatment is available to us?
Your suggestion that we might not like the idea doesn't somehow make it any more true.

Well you are welcome to wait for one and good luck to you because I firmly believe it isn't coming, sadly. But you are welcome to sit back and watch that play out, I just think it's very sad when others are recovering.

A psycho-social intervention is different. But then when people go to a physio and do strengthening exercises, their recovery may also be dependent on whether they do their exercises or not and we know in diabetes many young people don't comply with treatment for many reasons and have bad outcomes for that. M.E is definitely not the only thing that involves buy in. So you aren't alone really.

 

[josepdelafuente]

I think it may well be unique to M.E, I don't know, because how many other conditions have a straightforward pathway to full recovery, which brain retraining is proving to be for some. Cancer is very different and many people don't want chemo but the alternative is death. That sharpens the mind somewhat.

Not feeling up to recovering= undergoing a rapid positive change in your health and having the resources and the confidence to deal with that.

It's getting very circular.
You claim that there is a "straightforward path to recovery" in brain retraining, despite there being no evidence of sufficient quality to support brain retraining.

Why would anyone need "resources" or "confidence" to undergo a rapid positive change in health?
I don't want to be offensive, but I don't see how that makes any sense as a suggestion.
What are the potential risks of undergoing a rapid positive change in health, that would require some special reserve of resources and confidence?

 

[UkPoster]

Yes, unfortunately it doesn't meet the (rightfully very rigorous) standards necessary for research to be taken as evidence of effectiveness.

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.

 

[UkPoster]

It's getting very circular.
You claim that there is a "straightforward path to recovery" in brain retraining, despite there being no evidence of sufficient quality to support brain retraining.

Why would anyone need "resources" or "confidence" to undergo a rapid positive change in health?
I don't want to be offensive, but I don't see how that makes any sense as a suggestion.
What are the potential risks of undergoing a rapid positive change in health, that would require some special reserve of resources and confidence?

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.

 

[josepdelafuente]

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.

The type of research I'm looking for is research that provides evidence of effectiveness.
Are you saying that Raelan Egle's research is not trying to provide evidence of effectiveness?
If that is the case, what is the purpose of it?

And if that is not the purpose of it, what basis do you have for claiming that brain retraining is a straightforward path to recovery?

Yes there are conditions where the treatment requires buy-in (e.g making dietary changes for diabetes). In that example, the buy-in is required due to known evidence about nutrition and diabetes.
Where is the evidence that would justify the equivalent idea of "buy-in" for an ME treatment?

 

[Chandelier]

No insurance because my help involves pointing people in the direction of resources where the person linked to those resources is insured. I'm making suggestions that many others are making, because we're a big community now. I'm referring people to books or YouTube videos not the courses costing money, before anyone makes that assumption.

Would you mind compiling a list of the best free resources on brain retraining for ME/CFS for us?
Which mix of topics do you think gives the best chances for recovery, is there are certain order to it, and why?

 

[duncan]

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.

This seems to me to cross the line that distinguishes condescending from insulting.

Maybe I've missed your post: Do you have ME/CFS? It doesn't sound like you do. I apologize if I am mistaken.

 

[josepdelafuente]

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.

These are huge generalisations about what are currently imaginary people.
Who are these people?
Citing groups of hypothetical people to support your chosen theory is not good enough, in a scientific sense. It is not serious engagement with the issue.
I don't mean this as a personal attack, I mean it as an explanation for the very real frustration you are picking up on from so many of us.
It shows an immense lack of respect and intellectual rigour.

 

[JellyBabyKid]

There are people you can reach out to

Recommendations welcome, as long as it's not one of these £400 a month programmes (who has that kid of money when they are sick?!)

 

[rvallee]

I think the thing that humans most desperately want to be true is the power of mind over matter. The ability to make to make the world comply to your thoughts and desires, simply by wishing it so, by sheer will power.

"Healing magic" remains the last universal great belief system, one that is fashionable enough to affirm in any context, including professional ones. All the other ones have vanished from most contexts, all of them from professional contexts.

 

[rvallee]

I've never heard anyone articulate this instinct. I'm not saying it doesn't happen, but in my personal experience in talking to many, many people, I haven't met anyone who prefers their "sick role" to getting their life back. What is the evidence that people feel this way? It seems often to be a response to those who don't report recovery from mind-body interventions.

If there is one universal sentiment, the one thing that everyone agrees with in this community, it's that we all 100% hate everything about being ill, all the time, and always have.

We don't agree on much. We all agree on this. We all hate living like this, every last one of us would go back in time to before we got ill, no matter how mad it was otherwise. So making this a primary message is especially screwed up.