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

[Sasha]

They’ve had a replication crisis for years. It doesn’t seem to have made much of a difference.

Maybe it has - we don't know that people haven't been put off the field in droves.

They have heard about the replication crisis in psychology and there are plenty of critiques of medical research in general.

This is a different issue, though - it's a fundamental design issue that's being ignored. It's a big fat emperor with no clothes on but there's no little boy pointing it out.

Why would they put weight on a document created by a forum with no formal power or standing, unless they already agree and recognise that S4ME is a place of scientific rigour?

I agree, but I wasn't suggesting that our factsheet do this job - I was saying that a peer-reviewed journal paper could.

I don’t think it would do much in a courtroom - you’d need expert witnesses.

It wouldn't be the only thing in the courtroom - it could be part of a submission.

To be clear: I want such a document to exist. I just don’t know how much of an impact it would have because most people seem to have already decided if they rate the BPS science or not.

I don't think we know what people think!

 

[Kitty]

I just don’t know how much of an impact it would have because most people seem to have already decided if they rate the BPS science or not.

I don't think it would affect the BPS lobby very much.

I can only think of two reasons they maintain such an untenable position: naked financial interest, or individuals not being ready to confront the fact that they've wasted so much time and effort.

But it would be useful to anyone who's open minded and capable of listening, and there are plenty of those.

 

[Yann04]

I think that point was mainly about how a subjective scale, in theory, can capture exactly what you're looking for in the full spectrum of patients, since they're being asked about the specific thing in question. While step count or income might not show any changes even if the patient improves.

While I don't think potential issues with the latter mean you should necessarily use the former, I think it's good to think about those kinds of issues with metrics like step count.

I could potentially see how someone mild, who already walks and has a job, improves and feels better, but has no reason to walk more and doesn't have enough improvement to get a raise or a new job. On the plus side, this limitation should make any results that do show increased step count or income even more convincing. And it might encourage researchers to recruit more severely affected people to have more of a chance of seeing an effect.

Isn’t that beside the point though.

A single outcome (both subjective and objective) has confounders that don’t tell us much. The point is to choose a couple different outcomes and see if there is a consistent story of improvement or not.

I think everyone can agree there is no perfect outcome measure for ME. But the point was the subjective outcomes suffer the exact same flaws of confounders and indirectness as objective ones, but atleast the objective ones are far less impacted by reporting biases and placebos.

As Trish said, her illness drastically changed but Chadler fatigue scale didn’t,

I’d say for me I suffered more debilitating fatigue when I could study part time, than now that I am permanently bedridden, so for example fatigue seems to not be a good proxy for improvement either,

 

[Trish]

I think one of the problems with BPS research is it's largely led by psychiatrists who have come through medical and psychiatric training, which is a field apparently rife with prejudices about symptoms they can't explain or treat medically or psychiatrically. We don't seem to fit in either.

So they invented psychosomatic medicine based on the very shaky foundations of nineteenth century notions of neurasthenia and hysteria.

They decided symptoms they couldn't explain must be created by healthy, attention-seeking, lazy, perfectionist, catastrophising, mostly women, who were too weak to cope with stress, because of psychological and behavioural failings.

Psychologists have a different training, relying a lot on questionnaires to occupy their research students often as research subjects as well as researchers. Hence we have a toxic mix of judgmental doctors who want to get rid of pesky patients who don't get better, and psychologists and other therapists getting hooked on questionnaires and fancy stats trying to prove they provide the solution. They even invented a whole field called health psychology.

The whole thing seems to me to be toxic fantasy.

 

[Kitty]

I think everyone can agree there is no perfect outcome measure for ME.

No, but there are good ones. Actimetry results combined with evidence of a long-lasting change in the ability to participate in work, education or caring, and sport, interests or social activities would tell them a great deal.

If they can't show a substantial change in activity capacity in at least two domains—work-related and leisure-related—it's reasonable to conclude that the intervention being trialled isn't acting on the underlying cause of ME/CFS.

 

[Andy]

I think one of the problems with BPS research is it's largely led by psychiatrists who have come through medical and psychiatric training, which is a field apparently rife with prejudices about symptoms they can't explain or treat medically or psychiatrically. We don't seem to fit in either.

So they invented psychosomatic medicine based on the very shaky foundations of nineteenth century notions of neurasthenia and hysteria.

They decided symptoms they couldn't explain must be created by healthy, attention-seeking, lazy, perfectionist, catastrophising, mostly women, who were too weak to cope with stress, because of psychological and behavioural failings.

Psychologists have a different training, relying a lot on questionnaires to occupy their research students often as research subjects as well as researchers. Hence we have a toxic mix of judgmental doctors who want to get rid of pesky patients who don't get better, and psychologists and other therapists getting hooked on questionnaires and fancy stats trying to prove they provide the solution. They even invented a whole field called health psychology.

The whole thing seems to me to be toxic fantasy.

Add to this an insistence that the only patient voices that matter are those who attend their clinics and give positive feedback. Never mind that this will only ever be a tiny proportion of the patient community, and that repeated, far larger, patient surveys indicate that most find CBT and GET unhelpful at best, harmful at worst.

 

[Evergreen]

Well the problem we have is [1] patients are dying from malnutrition and [2] patients are recovering from doing things like "brain retraining". So I don't think it's good to just do nothing.

In addition to the excellent points made by @Utsikt and @Jonathan Edwards in response, who said anything about doing nothing? Not me. So that's a strawman argument which I'm going to park until we deal with the argument I actually made, which is that severe patients should not go near a rehab trial [your term] until (a), (b) and (c) above were met.

I think safety is important and the level of risk involved in a trial with severe patients is too high, as even a small percentage getting worse could mean people dying or ending up in unbearable suffering, and severe patients have reported worse outcomes than mild and moderate patients with rehab interventions such as GET. Individual severe and very severe patients are of course free to make their own decisions, and some will decide that they're happy to take on that risk - that's their prerogative and I respect it.

To deal with your strawman argument, as @Utsikt has already said, the solution to patients dying from malnutrition is feeding them and medical and dietetic interventions to prevent malnutrition developing in the first place. Not coaxing them to try untested therapies. As @Jonathan Edwards already said, patients report improvement and recovery from all manner of things, not just brain training.

As @Deanne NZ and @Jonathan Edwards have already said, patients also report deterioration with brain training. I have a friend who has improved a few times with various brain training approaches. Unfortunately, these improvements have not lasted and for the majority of the decade I have known them, they have had moderate-severe ME, currently severe. I watched a friend with very severe ME follow everything they were told in brain training and get very confused and upset when despite doing everything they had been told to calm their nervous system, there was no change in their ME. That was really hard to watch. I watched another friend enthusiastically embrace brain training, reporting how well they were doing with it, but there was no change in their functioning, and they are more incapacitated now (at the level of severe ME, though without a diagnosis).

There are many aspects of these therapies that aren't problematic, and which seem to help patients.

Do share - would love to hear more.

What are "these therapies"? Are we talking about brain retraining now or CBT or graded activity or what?

So what is wrong with either testing those, or offering patients advice?

Will need to hear what you're talking about to know if there's anything wrong with testing them. If it's something akin to meditating, then there may be relatively little risk, as long as it doesn't come with promises. Offering patients advice about untested therapies is only ethical when it is first explained to them that these therapies have not been tested and we don't know if they will make them better or worse, so they proceed at their own risk.

Surely death or permanent disability isn't the desired outcome here.

Huh? This seems to be a continuation of the strawman argument above.

Giving up and doing nothing until someone finds a biomarker or similar doesn't seem useful either.

Who said anything about "giving up and doing nothing until someone finds a biomarker"? Not me.

If it is a functional issue in the brain, it's likely going to take another few decades to show that definitively.

That seems very pessimistic to me, and surprising coming from someone so optimistic about the utility of brain training. But it would be a good way of generating unwarranted despair to make brain training more enticing.

 

[Adrian]

Why is that?

My intuition agrees, but I struggle to express why atm.

If you are experimenting on humans then you need to show value from those experiments (i.e. show that the risk of carrying out the experiment is worth it). But if your methodology is too weak to get any value from the experiment then you shouldn't be doing it as there is only risk and very little value

 

[rvallee]

It's frankly insulting and ridiculous to equate psychology with astrology and astrology and Scientology.

It's an odd interpretation of what I said, but just in case you really misunderstood what I said, what I meant is that our criticism of psychology is merely reflective of the fact that it has completely dominated everything that relates to us for decades, imposing their model of reality on us, whereas we would be just as critical of anyone doing the same regardless of the nature of their model, whether it is based on astrology, or even if, for some reason, it was podiatric in nature.

You are not aware of the history here, hence why you keep stating that you want to happen in the future what has already been done to death for 3 decades. Most of the studies from psychosomatic ideologues about ME/CFS in the last 10 years have been copy-and-paste versions of things that have already been done. They have not changed a single meaningful thing, they just keep trying the same nonsense with the same methodologies and claiming success regardless of what the outcomes are. It is simply not serious. Just because they take themselves seriously doesn't change that.

If some virologist or immunologist came along stating that our illness is basic AIDS and that our T-cells are dead, or whatever, we would be just as harsh about them. Especially if they were given the power to impose this on us, a power that psychosomatic medicine has been handed with zero accountability for decades. But that's not the case. And neither have astrologers. But we dismiss pseudoscience equally and regardless of its nature, it's just that psychosomatic ideology has completely dominated everything, is cheap to produce in quantity with little regard to quality, and this is the only reason it receives more criticism than, say, Scientology, whose claims are very similar in substance.

But I am done with this discussion, it's entirely pointless. This is a science forum, not a place for rhetorical marketing.

 

[jnmaciuch]

But I am done with this discussion, it's entirely pointless. This is a science forum, not a place for rhetorical soliloquies.

Same, I've decided not to engage anymore.

 

[Trish]

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[Trish]

This thread is now open.

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[CorAnd]

I watched a friend with very severe ME follow everything they were told in brain training and get very confused and upset when despite doing everything they had been told to calm their nervous system, there was no change in their ME.

In Sweden there is a fairly famous influencer who advertised brain retraining. Her husband has ME/CFS and her Instagram is full of posts about the disease. They both publicised his journey with brain retraining in very positive terms. She even wrote they believed ”We will now finally get rid of ME/CFS with this method”. That was last year.

This spring the husband posted on Instagram that brain retraining did not help despite his best efforts.

 

[Utsikt]

In Sweden there is a fairly famous influencer who advertised brain retraining. Her husband has ME/CFS and her Instagram is full of posts about the disease. They both publicised his journey with brain retraining in very positive terms. She even wrote they believed ”We will now finally get rid of ME/CFS with this method”. That was last year.

This spring the husband posted on Instagram that brain retraining did not help despite his best efforts.

That’s terrible, I’m sorry he had to go through that.

Did the influencer go back on her claims or take any responsibility?

 

[CorAnd]

That’s terrible, I’m sorry he had to go through that.

Did the influencer go back on her claims or take any responsibility?

No, none.

 

[CorAnd]

The sad part is that while the couple were heavily advertising brain retraining, I’ve had many people tell me I have to try this as well.

However, no one said anything when the husband posted that he did not improve and the method didn’t work. It just slipped by unobserved.

What got stuck in people’s minds is not the failure of the method, but the intense publicity and false claims that brain retraining would cure ME/CFS.

This couple did a lot of damage, if you ask me.

 

[Adrian]

The sad part is that while the couple were heavily advertising brain retraining,

Were they paid I thought influencers basically made money by being paid to promote stuff.

 

[rvallee]

However, no one said anything when the husband posted that he did not improve and the method didn’t work. It just slipped by unobserved.

What got stuck in people’s minds is not the failure of the method, but the intense publicity and false claims that brain retraining would cure ME/CFS.

This couple did a lot of damage, if you ask me.

Fake news above the fold on page A1 in the middle of the week. Retraction and correction in a small paragraph on page A22 of the week-end edition. A classic.

 

[Yann04]

Cf. The few bps papers we have managed to get a correction on the outright lies/manipulation

 

[DigitalDrifter]

if we dont know what´s wrong with the patient it has to be psychosomatic

Except most doctors don't even fully believe in psychosomatic illness, they just say they do because it provides perfect plausible deniability in case you report them. "We're not saying the symptoms aren't real", "It's the power of the mind".