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

[richie]

An interesting question is what do they do when they have a success with RA or Lyme, Do they declare they have a universal answer to RA and Lyme or do they say "We can help a bit"? Fair to ask them why re. CFS/ME they sound so often like they proclaim whole hoggery answers.

 

[rvallee]

I think at least some of those people probably did have physical illnesses and genuinely benefited from calming down their nervous system or whatever mindset/lifestyle shift. I could be wrong.

There is a conceptual problem in that "calming down the nervous system" isn't a real thing. The best analogy is that it's a psychological equivalent of detoxifying. The "toxins" happen to be thoughts, instead of molecules. All of the claims about the nervous system being too much this or not enough that are mere suppositions retrofitted to the models, no one actually has any evidence for it.

There is no reason to think that any of this does better than simple rest with enough support to afford it. This used to simply be called convalescence. In fact as some comments have pointed out, almost every time people talk about what helped out of those programs, they always mention anything but the treatment itself. Usually it's connecting with other people suffering from the same thing, which is no different from any support group, online or in person. Just like with most supervised exercise program, what most people enjoy is usually the recreational part of recreational exercise, not the exercise part.

The models are generic. The treatments are generic. The outcomes are generic. This is as generic as it gets. And in a context in which we now pretty much know for a fact that about 90% recover within a year, it's all too easy to see support for it, even though despite those good odds, trials always fail to move the needle, which clearly points to unrelated factors.

And just as generic is the idea that some people might benefit from this. This is entirely independent of the problems here. This is true in general, a lot of people would benefit from slowing down and doing less. And a lot of people would benefit from the opposite. What's clear is that no one is actually doing anything purposeful and achieving outcomes that aren't either pure chance or completely generic.

 

[skronen]

Some people in the Rituximab trials recovered, both in the treatment group and the placebo group.
Some people in the NIH study that didn't involve any treatment recovered,
Some people recover spontaneously.

I don't interpret any of those people as therefore not having ME/CFS, I interpret them as among the people who recover for no known reason.

I apply the same logic to some people who use brain retraining recover.

None of these recoveries is evidence that it was a particular treatment that cured them.

So we need clinical trials for brain training of the same rigorous standard as the Rituximab trial.

I agree with you but let me push back very slightly. You guys are the data experts, I didn't even have the chance to go to college, so forgive my ignorance. But is it possible that with the people who recovered with ritux that may mean something about their condition? Maybe some people diagnosed with ME/CFS have particularly overactive b-cells, but that still isn't enough to roll it out as a general treatment for the illness? Please fill in any gaps in my knowledge.

 

[rvallee]

I have been coming across brain retraining proponents claim they were told to avoid PEM at all costs or decrease activity as much as possible until they basically became isolated in a dark room by choice (emphasis on the choice part).

Is this really a common thing? Who is telling them to do this? Are they being misled by randoms on the internet who misinterpreted what pacing is really about in practice, or are they exaggerating in order to cast pacing in a bad light, just as Wessely et al did before them?

Extremely unlikely to be true. Even in general ME/CFS forums every time someone brings it up people object to it, saying that it's always best to do as much as can easily be handled. No one is advising total bed rest of this kind unless it's absolutely necessary, and when it is necessary then it's no longer an option so it doesn't even matter.

It could be that a few clinicians with their own ideas about this might advise something like this, but then they would be at odds with most patient communities, so very much outliers.

 

[Jonathan Edwards]

I don't interpret any of those people as therefore not having ME/CFS, I interpret them as among the people who recover for no known reason.

That is the cautious, default interpretation. However, a lot hinges on what you mean by ME/CFS. If it means fitting the diagnostic criteria then the interpretation is on pretty solid ground. If it means having the same disease as I am familiar with and know as ME/CFS then it becomes a lot more speculative.

I think the point that some of us are trying to make is that we are not sure about any of this. We need to apply the same level of critique to our own interpretations as to those of others.

 

[rvallee]

I have no objection to brain retraining as a life style choice or a well being, wellness or recreational activity, and I have no doubt that there are many people who strongly believe it significantly enhances their quality of life, but to sell it as a medical cure for anyone on the basis of current evidence is potentially dangerous, highly unethical and potentially unlawful.

Yeah pretty much. As a lifestyle thing, it's comparable to astrology. As long as it remains a personal preference, whatever, keep it to yourself.

I don't even fault the people who fall for this. All the blame goes to medical professionals who either promote or allow this stuff to be promoted as legitimate health care. It's the systems that allow this pseudoscience to creep into their systems that are weak and cowardly, and entirely at fault for this.

 

[Jonathan Edwards]

Maybe some people diagnosed with ME/CFS have particularly overactive b-cells, but that still isn't enough to roll it out as a general treatment for the illness? Please fill in any gaps in my knowledge.

There are details to the time courses of improvements in the Norwegian trials that. taken with a lot of other things, make it pretty unlikely, at least to my mind as someone who has worked with B cell treatments, that these improvements were due to an effect on B cells. There were improvements in the placebo group in phase 3 as well.

 

[skronen]

I also want to add that, even if DNRS had really worked for me and I had a miraculous recovery, I still wouldn't necessarily believe it would be helpful for most patients. This is something that's really annoying about the recovery / mind-body / brain-retraining world. These people seem to have zero issue applying their case to every single patient out there and making broad claims about these illnesses in general. I think this has to do with the nature of the theory and the tone of these insular new agey healing spaces. In so many words they are saying: I am better than you.

One of the functional medicine people, who I won't name but has a pretty big platform, told me EVERY SINGLE ME/CFS patient in the world who hasn't recovered is due to some underlying emotional or psychological issue. Really!? How would you know!? Same person who told me Maeve wouldn't have died had she dealt with her stress.

 

[rvallee]

There is no good reason to think there is anything more to this drivel than crystal gazing or the alignment of the planets.

The biggest mistake we can make is to think that making some concessions on this stuff will somehow lead to progress, and a better long term outcome. It cannot. The advocates for it will simply take that inch and run mile with it.

It's just a matter of framing. It can be true that some people with chronic illness might benefit from financial literacy classes, it just has nothing to do with their illness, it's an independent thing that lots of people who are perfectly healthy might also benefit from, unrelated to anything that isn't about financial literacy.

It might be that some might benefit from using astrological projection to connect with their dead relatives and make peace with them.
It might be that some people might benefit from learning how to cook simple meals with cheap ingredients.
It might be that some people might benefit from a bit of renovating inside their house, to quiet an annoying clanking noise or lousy neighbor that wakes them up at night. In fact, this is definitely true.

All those things might be true, in people with chronic illness, in people without chronic illness. They're just entirely unrelated. Same with rest or getting a bit of financial help, or any generic thing, of real tangible value, such as cooking skills, or not, such as imagining happy scenarios to avoid unpleasant situations.

Things being generically true in some people, which no one can identify, is simply generic, and ultimately useless. It's genuinely insane to make medical decisions on this basis, it simply means nothing. As a matter of facts, astrological signs likely have a bigger influence on many of those things, by simple virtue of being related to being born at a certain time of year. It's just unrelated to any particular situation.

 

[richie]

Some people in the Rituximab trials recovered, both in the treatment group and the placebo group.
Some people in the NIH study that didn't involve any treatment recovered,
Some people recover spontaneously.

I don't interpret any of those people as therefore not having ME/CFS, I interpret them as among the people who recover for no known reason.

I apply the same logic to some people who use brain retraining recover.

None of these recoveries is evidence that it was a particular treatment that cured them.

So we need clinical trials for brain training of the same rigorous standard as the Rituximab trial.

Heterogenous cohorts remain a central problem wh n considering individual recovery. A trial may show the X.Y or Z are not useful treatments for ME but that does not demonstrate that any responders were folk who would've got better anyway. Some may have been real responders with the underlying problem that the treatment on trial could address.

 

[Lou B Lou]

I suspect this is on a par with the apparent brain retraining meme that all doctors tell people with ME/CFS that they are never going to recover. As far as we can tell this is very far from the reality experienced by members here but it does make a good straw man argument for these valiant brain retraining warriors fighting the cruel system.

These examples of potential misinformation either by doctors or apparently cured ME/CFS patients, illustrates why anecdote is not a good basis for medical treatment/management.

I have no objection to brain retraining as a life style choice or a well being, wellness or recreational activity, and I have no doubt that there are many people who strongly believe it significantly enhances their quality of life, but to sell it as a medical cure for anyone on the basis of current evidence is potentially dangerous, highly unethical and potentially unlawful.

@Peter T wrote: "I have no objection to brain retraining as a life style choice or a well being, wellness or recreational activity, and I have no doubt that there are many people who strongly believe it significantly enhances their quality of life, but to sell it as a medical cure for anyone on the basis of current evidence is potentially dangerous, highly unethical and potentially unlawful."

Thanks @Peter T ! THIS

 

[MrMagoo]

Why is brain training so icky?

Aside from its similarities to old GET type CBT, and the Lightening Process which are not recommended for ME/CFS, there’s something about it which triggers a quite visceral response for some.

It’s unfalsifiable. It’s a self-sealing loop. It’s It cannot be wrong.

If it helps you, that’s evidence that it works.If it doesn’t, you didn't do it right. Or enough. Or the right “version”.
We know it works because other people say it does.

This takes away the opportunity to say “but my experience is different…” and actually that boundary is tested much earlier than in the course itself. It’s tested in the introductions which are already inventing a new reality “not allowed to talk about this/medicine wants us silenced/told I’d never recover/told to lie alone, sealed in a silent dark room” etc all of that is, we know, highly improbable. If you swallow it though…what else will you swallow?

Add in to this the bad PR they have from Garner being one of their most vocal proponents, the happy, happy, joy, joy, recovery stories, bad social media behaviours and general MLM vibes from “recovered” patients becoming practitioners and it’s no wonder that patients get annoyed with the doe-eyed innocent “but why are you so against us” schtick.

They're about as lovely and heartwarming as a Coca Cola ad - cynical capitalist selling the child-catcher, disguised as Santa Claus. In my opinion.

 

[rvallee]

So we need clinical trials for brain training of the same rigorous standard as the Rituximab trial.

Aside from the fact that it won't ever happen, even then it wouldn't matter.

If we imagine a scenario in which the community is so pissed that we manage to organize huge resources and say "OK, fine, we'll fund a series of extremely rigorous trials, with significant input from the thought leaders of the ideology, they will be large, have long-term follow-up and so on, there will be massive oversight and transparency so that everything is approved as things move on, the only compromise is they will be extremely rigorous" it still wouldn't matter. Mostly because no one would ever do that. Not us. Not them. Us because it's stupid. Them because they know it would disrobe their golden calf.

Doing this would take 10-20 years, would easily cost $50-100M+, and it would be forgotten as soon as it's over because it wouldn't support the ideology. They'd just like they did with "the definitive trial" that wasn't and either ignore it or praise it as is convenient.

None of this matters, it's a belief system with a giant sunk cost that no one wants to acknowledge was a totally predictable, and predicted, bust. There is no evidence that will convince the systems to stop funding it, no amount of evidence against that would have any impact whatsoever.

 

[rvallee]

I agree with you but let me push back very slightly. You guys are the data experts, I didn't even have the chance to go to college, so forgive my ignorance. But is it possible that with the people who recovered with ritux that may mean something about their condition? Maybe some people diagnosed with ME/CFS have particularly overactive b-cells, but that still isn't enough to roll it out as a general treatment for the illness? Please fill in any gaps in my knowledge.

It could but we don't know. The main problem with the ritux trial is that some in the control arm recovered. In fact it's that there were no meaningful differences between the treatment arms that we don't ritux doesn't work. Some worsened, some stayed the same, some improved, about equally in both arms.

This is what controlled trials are all about, and it is why most psychobehavioral trials are either not controlled, poorly controlled, or end up arguing about in-group differences, rather than meaningful between-group differences, which don't happen when trying ineffective treatments.

 

[rvallee]

This is something that's really annoying about the recovery / mind-body / brain-retraining world. These people seem to have zero issue applying their case to every single patient out there and making broad claims about these illnesses in general.

It's definitely worth nothing that the vast majority of people who do those courses do no such thing. It's only a small minority who decide to make a business of it, or a smaller fraction who are so convinced they evangelize for it. Given how many people have done those courses, it looks to be somewhere like 0.001%-0.01% who bother saying about it. Most people don't overshare like this.

There are definitely equivalents in other treatment approaches, like some surgical procedures. There are also a lot of people who claim that drinking urine cures cancer, so that has to be taken into account.

 

[Lou B Lou]

Link to the Executive Summary of the Goldsmith Report

ME/CFS and Long COVID Recovery: The Goldsmiths Report - The Recovery Channel

ME/CFS and Long COVID Recovery: The Goldsmiths Report For many people diagnosed with ME/CFS, being told by a doctor you’ll never recover is one of the hardest parts of the journey. But a new study from Goldsmiths, University of London is challenging this narrative. The Recovery Report, a...

recovery-channel.org

The copy and paste function brought across some formatting but I'm too unwell to rectify it now. I'll try and come back to it tomorrow.

Thanks @Maat - The quotes you listed from the Goldsmith's Recovery Report are frankly horrifying - and indicate intention by the 'Recovery movement' to do a Systematic Infiltration of/Takeover of all media and medical systems, with the intention of installing recovery ideology everywhere.

That intention comes across as, frankly, power-crazed, and in the quotes from the Goldsmith's Recovery Report that you highlighted, is a well thought out systematic agenda. The quotes put together read as an expression of fanaticism, as some kind of Crusade..

.

 

[skronen]

It's definitely worth nothing that the vast majority of people who do those courses do no such thing. It's only a small minority who decide to make a business of it, or a smaller fraction who are so convinced they evangelize for it. Given how many people have done those courses, it looks to be somewhere like 0.001%-0.01% who bother saying about it. Most people don't overshare like this.

There are definitely equivalents in other treatment approaches, like some surgical procedures. There are also a lot of people who claim that drinking urine cures cancer, so that has to be taken into account.

The percentage might be more than that. The Raelan Agle podcast is absolutely full of these types. There's definitely a selection bias, and I'm sure she seeks out these people and incentivizes them to tell their story. But I've listened to about 50 of these interviews and they all strike me as quite unhinged about this and feel its their moral duty to proselytize, even the more believable ones, even the ones who aren't selling courses.

 

[MrMagoo]

Aside from the fact that it won't ever happen, even then it wouldn't matter.

If we imagine a scenario in which the community is so pissed that we manage to organize huge resources and say "OK, fine, we'll fund a series of extremely rigorous trials, with significant input from the thought leaders of the ideology, they will be large, have long-term follow-up and so on, there will be massive oversight and transparency so that everything is approved as things move on, the only compromise is they will be extremely rigorous" it still wouldn't matter. Mostly because no one would ever do that. Not us. Not them. Us because it's stupid. Them because they know it would disrobe their golden calf.

Doing this would take 10-20 years, would easily cost $50-100M+, and it would be forgotten as soon as it's over because it wouldn't support the ideology. They'd just like they did with "the definitive trial" that wasn't and either ignore it or praise it as is convenient.

None of this matters, it's a belief system with a giant sunk cost that no one wants to acknowledge was a totally predictable, and predicted, bust. There is no evidence that will convince the systems to stop funding it, no amount of evidence against that would have any impact whatsoever.

You may notice the sorts of trials which are carried out by the beauty industry are always very small-scale.

The industry is worth billions and could easily afford bigger trials, longer-range trials, using the best scientists and labs. But they don’t. Why not?

They may not get the answer they want.

They already have the answer they need from their test group of 96 women of whom 90% say their wrinkles had reduced after 30 days.

 

[richie]

Why is brain training so icky?

Aside from its similarities to old GET type CBT, and the Lightening Process which are not recommended for ME/CFS, there’s something about it which triggers a quite visceral response for some.

It’s unfalsifiable. It’s a self-sealing loop. It’s It cannot be wrong.

If it helps you, that’s evidence that it works.If it doesn’t, you didn't do it right. Or enough. Or the right “version”.
We know it works because other people say it does.

This takes away the opportunity to say “but my experience is different…” and actually that boundary is tested much earlier than in the course itself. It’s tested in the introductions which are already inventing a new reality “not allowed to talk about this/medicine wants us silenced/told I’d never recover/told to lie alone, sealed in a silent dark room” etc all of that is, we know, highly improbable. If you swallow it though…what else will you swallow?

Add in to this the bad PR they have from Garner being one of their most vocal proponents, the happy, happy, joy, joy, recovery stories, bad social media behaviours and general MLM vibes from “recovered” patients becoming practitioners and it’s no wonder that patients get annoyed with the doe-eyed innocent “but why are you so against us” schtick.

They're about as lovely and heartwarming as a Coca Cola ad - cynical capitalist selling, the child-catcher disguised as Santa Claus. In my opinion.

Yes. The sealed loop is the nub of the issue and all concerned must understand the danger which this approach bears for objective medicine.

I am happy for anyone who improves in any way and do not think it is realistic to just gainsay everyone who claims benefit. Rejection is not the same as refutation and we cannot refute their stories. Nor can we know that "they would have got better anyway". But everyone must understand the pernicious nature of presenting closed loop "explanations" as the foundation for resolving ME and must be aware of the need in such systems to conform people to a belief by convincing them of sth that may not be a truth. We can refute implied claims about ME as a whole.

These approaches are a tool but one of the ways the tool works is by encouraging belief in its universal applicability. They need the authorities to believe as they believe and this is most dangerous.

 

[Utsikt]

@Jonathan Edwards Isn’t that just «you might not have had «real» ME/CFS, or if you did it was natural recovery»?

By «real» ME/CFS I’m thinking of whatever ME/CFS turns out to be, not just fitting the criteria.

I’m not closed to the idea that pretty much any condition involving the brain can be mimicked by the brain, but as you say it’s not really possible to determine without some pathology to measure. At the same time, it can easily become a cop-out and it isn’t in itself an argument against the effectiveness of any of these interventions for ME/CFS.

This reminds me of the diagnostic test discussion from a few months ago about how you can’t make a test that’s better than the criteria if you’re using the criteria to calibrate it.

I also wonder how it fits with the PEM vs no PEM in inclusion criteria for ME/CFS trials?

Extremely unlikely to be true. Even in general ME/CFS forums every time someone brings it up people object to it, saying that it's always best to do as much as can easily be handled. No one is advising total bed rest of this kind unless it's absolutely necessary, and when it is necessary then it's no longer an option so it doesn't even matter.

It could be that a few clinicians with their own ideas about this might advise something like this, but then they would be at odds with most patient communities, so very much outliers.

I just posted this elsewhere:

There’s a Norwegian book from 2007 on pacing (Aktivitetsavoassing) that talks about rest as a way of healing. It recommends intensive rest for weeks or longer, and claims that it’s the only way to cause improvements.

You’re essentially told to accumulate as much rest as possible, and to keep doing significantly less than what your «limit» while improving. I don’t mind advocating for not rushing things if you are actually getting better - even Fluge and Mella recommend the participants to take things slow if they feel they are improving - but it’s something else to say that rest can heal.

Ron Davis has also advocated for this kind of view in an interview he did, where he claims a girl recovered from severe by deciding to never get PEM again (not even a little).

This kind of aggressive rest pops up now and then. I saw it frequently in 2022 in LC circles, and it’s quite prevalent in some Norwegian ME/CFS circles.

I don’t think you’ll find many doctors pushing it though, although I think e.g. Landmark claims that’s what she was told.