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

[rvallee]

PACE had an objective measure: a walking test.

And employment: no change.

 

[Utsikt]

Incidentally, @Friendswithme ... Hi, I wonder if you would mind/are able to please breaking up your paragraphs into smaller ones when you comment - with just 3-5 lines per para (approx.) I want to read what you're saying but I just cant read long paragraphs because the lines all merge together & it becomes impossible, so I cant read it.

I’m assuming you might be on a laptop, because this paragraph is 9 lines on my phone?

But I agree with using frequent line breaks - walls of text are very difficult to read.

 

[rvallee]

The fact is that they formulated a hypothesis that was disproven by their own study.

And because it's emblematic of the ideology and its industry, unrelated to ME/CFS, a pragmatic trial involving some of the same researchers did the same thing with seizures that don't show up on the standard epilepsy tests. Their trial led to no reduction in the primary outcome they specified in advance, and they still said it was effective. Because they asserted from the start that it would be, and the medical profession tolerates it.

Because all this ideology does is assert that some things are effective, and even when research shows otherwise they continue anyway. This isn't about ME/CFS specifically, the entire industry is a house of cards built on beliefs. It has nothing to do with ME/CFS specifically, all the same flaws exist in all things psychosomatic, whether the modern "brain retraining" kind, of the old Freudian stuff, all of which overlap by at least 90%.

The same thing has been repeated exactly with Long Covid. All the same mistakes. All the same initial assertions not validated by research, but are still being asserted. They take advantage of natural recoveries, and don't bother with the millions of people who are still ill. So many that it's breaking disability systems in many countries.

Nothing out of this discipline can be taken at face value. They have never shown any evidence for their claims, and it's only because the medical profession is incapable of accepting the limits of their knowledge that the ideology is perpetuated.

 

[rvallee]

I am repeating myself but not currently. No. And that is a problem, but I don't personally believe a brain retraining study would be allowed to go ahead on M.E. as things stand. I said that in an earlier post and someone responded saying they would be ok with that, which is great. But I don't think most people would be ok with thousands to millions being spent on it instead of biomedical research. There would be uproar. The MEA would speak out against it. Patients would say they feel it would do them harm because it's just like CBT and GET (it isn't). There would be huge pressure on the research team to stop.

There have been many such studies already. And the problem is precisely as @jnmaciuch said: they just move the goalposts, including simply deciding after the fact that, if they failed, then they weren't properly done. Which is a primary feature of pseudoscience.

PACE was sold as the definitive trial. The big one that would settle the issue of whether exercise works. It didn't settle it. They had a null result, and they cheated to present a fake positive one. And nothing has changed either way since. In the end, participants still had on average the physical function of a 78 year-old. And they called it "back to normal". This is not serious. In fact it's plainly fraudulent.

There is no way we could actually stop such a study. We have no power over any of this. They keep happening all over the place for this reason. There have been multiple studies like you want to have happened, studies like FINE, SMILE and many others elsewhere. Most of them focused on some imaginary fear avoidance and all the brain retraining stuff.

There have in fact been dozens of such studies, but you don't know that, because they're simply ignored since they didn't pan out. So will all the future ones. They will be funded. They will have terrible methodology. Their results will be uninterpretable, and more will keep happening anyway. Just like with peptic ulcers, it will only end once the problem has been solved.

Sorry but this is simply pseudoscience, not a legitimate field of study. Real professionals don't behave like this. People with a product to sell do. There are decades of history you are not aware of, all that you suggest to happen already has. It's why things are so broke, why medicine was caught completely by surprise by Long Covid, and still doesn't know how to treat it.

 

[rvallee]

indeed. Claim it is thousands recovered but at best a few actual 'testimonials' (in commas as many - of the ones posted, because there aren't many anyway - don't follow the normal etiquette regarding these)

RecoveryNorway also loves to boast about this. We know that many thousands, probably tens of thousands, have been through those courses. They made millions out of this. In some countries, people have to at least try it.

Their website has fewer than 100 testimonies. Many of the testimonies are current employees, owners or promoters of the Lightning Process. The testimonies are also about as convincing as what an average acupuncture or homeopathic clinic would boast. Because it's fundamentally the same thing.

This is a lot like the claims many of the ideologues have made about us, how we are dangerous activists harassing and threatening researchers, when in reality those claims have been debunked, and the best they could do a few years ago when a few of them held a private conference was that someone once through a cup on the floor in anger at being thrown out from speaking in, I think, a conference.

The claims started with death threats, being more dangerous than an actual war zone (the Iraq war). Then it was harassment. Then trolling. Then just 'vibes'. Just like thousands turn into a few hundred turn into basically a few dozens.

All the marks of a giant con built on pseudoscience.

 

[Utsikt]

There have been many such studies already. And the problem is precisely as @jnmaciuch said: they just move the goalposts, including simply deciding after the fact that, if they failed, then they weren't properly done. Which is a primary feature of pseudoscience.

PACE was sold as the definitive trial. The big one that would settle the issue of whether exercise works. It didn't settle it. They had a null result, and they cheated to present a fake positive one. And nothing has changed either way since. In the end, participants still had on average the physical function of a 78 year-old. And they called it "back to normal". This is not serious. In fact it's plainly fraudulent.

There is no way we could actually stop such a study. We have no power over any of this. They keep happening all over the place for this reason. There have been multiple studies like you want to have happened, studies like FINE, SMILE and many others elsewhere. Most of them focused on some imaginary fear avoidance and all the brain retraining stuff.

There have in fact been dozens of such studies, but you don't know that, because they're simply ignored since they didn't pan out. So will all the future ones. They will be funded. They will have terrible methodology. Their results will be uninterpretable, and more will keep happening anyway. Just like with peptic ulcers, it will only end once the problem has been solved.

Sorry but this is simply pseudoscience, not a legitimate field of study. Real professionals don't behave like this. People with a product to sell do. There are decades of history you are not aware of, all that you suggest to happen already has. It's why things are so broke, why medicine was caught completely by surprise by Long Covid, and still doesn't know how to treat it.

Let’s not forget the NIH study where they just didn’t say anything about effort preference before publication. They held meeting discussing the findings and withheld the thing they tried to make out to be the most important finding afterwards.

So even if ‘we’ had the power to stop terribly founded studies, we might not even know about them until it’s too late.

 

[dundrum]

Then why aren't all the stressed people in the world, which is probably practically everybody at some stage in their lives, suffering from ME/CFS?

Why aren't they all suffering from PTSD, sleep, disturbance, migraines, chronic fatigue, depression, anxiety, chronic pain, tension headaches, or IBS, all of which can be caused by stress? Oh wait, they are! Around 75% of Americans reported to the American Psychological Association that they experienced a physical or mental symptom of stress in the last month. https://www.singlecare.com/blog/news/stress-statistics/

The participants in the PACE trial who managed to do the end of trial 6 minute walk test were on average only able to walk a little further, many walked shorter distances, and a significant number didn't manage to to the test at all, even though the managed to fill in the questionnaires. The distances walked were still at the level of sick people, nothing like the distances a healthy person can walk or the improvements shown by people with other conditions after 12 months of rehab.

I think that shows very clearly that people with mild to moderate CFS as defined at the time were not objectively helped to improve their physical health after 12 months, added to the fact that there was no improvement in the step test and in employment. I think you are wrong. A mild patient who has recovered should have been able to walk much further, done significantly better on the step test and been able to return to work and stop claiming sickness benefits.

And yet their 6mwt was significantly improved over baseline (for the GET group), even though it was a fairly small increase. I'm not saying that GET is the answer. Clearly it's problematic. But it doesn't help to ignore the facts.

 

[Jonathan Edwards]

Why aren't they all suffering from PTSD, sleep, disturbance, migraines, chronic fatigue, depression, anxiety, chronic pain, tension headaches, or IBS, all of which can be caused by stress? Oh wait, they are! Around 75% of Americans reported to the American Psychological Association that they experienced a physical or mental symptom of stress in the last month.

This seems to be lowering the debate to a very trivial level. The question was about ME/CFS. I had a mental symptom of stress this month - a night of insomnia related to a large unpaid bill. The two are not comparable. And of course the citation does not take into account the psychology of psychologists asking how many people have their favourite symptoms (and the psychology of the responses).

 

[jnmaciuch]

And yet their 6mwt was significantly improved over baseline (for the GET group), even though it was a fairly small increase. I'm not saying that GET is the answer. Clearly it's problematic. But it doesn't help to ignore the facts.

Which could easily be explained by participants in the treatment arm simply being willing to push themselves a little harder and ignore real negative consequences for the sake of "proving" that they aren't fearful of activity or whatever they were primed to believe.

Added: The improvement was well within the range of what pwME report when having to push themselves beyond what they know they can do without triggering PEM due to necessity.

 

[dundrum]

As somebody who has recovered, twice, that sounds like naive nonsense.

You can't mistake the recovery process. A body that was ill and in pain stops being ill and in pain. Overlooking it would be like overlooking a bucket of water being thrown over you.

It's like recovering from a virus. You wake up feeling better. Lying in bed for weeks wouldn't alter the fact of the recovery, because whatever you did, all the symptoms of illness would have gone.

It's comical to suggest that people are somehow in control of this process. People can't stop themselves recovering.

But ME/CFS isn't typically like the flu (although can sometimes have flu-like symptoms). Lying in bed can definitely cause pain, fatigue and POTS. Worry about your body being broken can definitely cause symptoms. Those can be addressed. It's naive to think that your body will magically recover from ME/CFS by itself. It (generally) won't, otherwise we wouldn't be discussing it on this forum. Everyone would just naturally recover, which clearly isn't the reality.

 

[dundrum]

This seems to be lowering the debate to a very trivial level. The question was about ME/CFS. I had a mental symptom of stress this month - a night of insomnia related to a large unpaid bill. The two are not comparable. And of course the citation does not take into account the psychology of psychologists asking how many people have their favourite symptoms (and the psychology of the responses).

I'm well aware of that. The point is that stress doesn't cause one specific symptom (or syndrome), and is unpredictable.

 

[Jonathan Edwards]

Which could easily be explained by participants in the treatment arm simply being willing to push themselves a little harder and ignore real negative consequences for the sake of "proving" that they are fearful of activity or whatever they were primed to believe.

Indeed, and of course the real point is that, however statistically significant it might have been the apparent difference was pathetically insignificant even in the face of all the marketing to persuade people they were having the best treatment. I don't know if Fluge did 6 minute walks but the apparent (but spurious) benefit of rituximab in the open phase II study was far more dramatic than the miserable data from GET.

 

[Jonathan Edwards]

The point is that stress doesn't cause one specific symptom (or syndrome), and is unpredictable.

So you missed Trish's point completely? These are non-sequitur.

 

[Jonathan Edwards]

Worry about your body being broken can definitely cause symptoms. Those can be addressed.

What is the evidence for these statements? Have they been taught somewhere? If so it would be interesting to know where. I am not aware of any evidence to support them. It sounds like the content of a psychology lecture.

It's naive to think that your body will magically recover from ME/CFS by itself. It (generally) won't, otherwise we wouldn't be discussing it on this forum. Everyone would just naturally recover, which clearly isn't the reality.

That all seems to be irrelevant. People are aware that recovery rates are low so they are not expecting to magically recover. A few lucky ones do. Where does that impact on the discussion of the validity of Brain Retraining?

I spent an hour or two searching through the literature on PubMed on Brain Retraining today. I still find nothing I would call a testable scientific theory or evidence that it works. Most of the stuff is very dubious mumbo-jumbo about telling you limbic system to calm down. This isn't neuroscience.

 

[rvallee]

While I understand that it is natural for someone who has recovered from whatever illness they have been suffering from and wants to share that good news with others, I find something odd about people who have recovered egging other people on and staying around in support groups for years after recovery, when they must know the harm their persuasive techniques can cause.

This is a good point. In fact it has been a feature of Long Covid communities, for people who have recovered to announce it, that they are leaving the group, and wishing everyone well.

Most people who recover just move on with their lives. In fact, this has long been a problem for us, as those healthy allies would be critical in improving things. But unless they have something to sell, they usually don't stick around, as it's a miserable time in their lives they don't want to be reminded of.

But in that case, a lot of those people who announced having been recovered later relapsed. Some of them posted about it. Most of them didn't. Some had attributed it to supplements, others to pacing, others to rest, others to time, others to brain retraining. Most didn't attribute it to anything, because it's obvious that there is no such grand pattern. There have been more than enough Long Covid studies to have identified them already if anything did.

 

[Utsikt]

Why aren't they all suffering from PTSD, sleep, disturbance, migraines, chronic fatigue, depression, anxiety, chronic pain, tension headaches, or IBS, all of which can be caused by stress? Oh wait, they are! Around 75% of Americans reported to the American Psychological Association that they experienced a physical or mental symptom of stress in the last month. https://www.singlecare.com/blog/news/stress-statistics/

You’ve completely missed the point. If stress caused all of these symptoms or conditions, then everyone who are stressed would have all of them when they are stressed. They don’t, so something else has to be involved, partially or fully.

And yet their 6mwt was significantly improved over baseline (for the GET group), even though it was a fairly small increase. I'm not saying that GET is the answer. Clearly it's problematic. But it doesn't help to ignore the facts.

Statistical significance != clinical significance.

This is really basic stuff.

 

[bobbler]

Wow i'd be really thrilled if a study like this could be done. Then we'd know once and for all!
For those it helped we might be able to elucidate why it helped them and not others and if no benefit was shown we could all stop wasting our energy debating it.

Incidentally, @Friendswithme ... Hi, I wonder if you would mind/are able to please breaking up your paragraphs into smaller ones when you comment - with just 3-5 lines per para (approx.) I want to read what you're saying but I just cant read long paragraphs because the lines all merge together & it becomes impossible, so I cant read it.

I know I'm not alone in that, I know many people with ME/CFS also struggle with it.

I'm not sure that anything ends the beliefs of these individuals, and @Friendswithme has a point that these days given how much money has been wasted on these things then really the funds do need to be going on getting to the bottom scientifically of what the condition is and finding if not a cure biomedically then something as close as possible going forward.

As a thought experiment, if pwme were cured of their condition, and those who had been through the dystopia of the last decades made whole where injustices robbed them of various rights (like erroneous notes on their files which prevented them from accessing any healthcare) or entitlements or made them unnecessarily worse, then we would see who was vulnerable enough left to feel this sort of thing appealed and hopefully there would be less inappropriate marketing because ME/CFS wouldn't exist so there wouldn't be any point in marketing to those around them in order to 'nudge' them into such 'treatments'?

I also think it is worth noting that I doubt there is actually a huge cost difference between eg a properly done genetics study and a properly done study into something like this if done to basic standards anyone should expect regarding basic ethics and decent recruitment and methodology in line with regulation/licensing (which is where behavioural/therapy-led have been allowed to cheap out, but also leads to useless findings because of this) ? Much cost relates to recruiting an appropriate sample in an appropriate way and double-blinding, objective triangulation etc. ie doing things properly ?

But taunting us that 'until proven' whilst in their mind deciding that they are the ones who get the last say on whether it is best of 7,9, or 25893 and so on, has led to a gravy train for those who have created a business around their new methodologies which centre on 'nothing is ever falsifiable' and not using null hypotheses etc. so nothing is ever built upon.

Unless it is what they want to hear it is ignored, just like the current situation with the new guideline, the analysis of the quality of research so far being as boldly ignored as we and those making decisions allow them to barefacedly get away with.

I think we are already there on the evidence after decades of free reign and huge amounts of money on iterative studies all aimed at trying to prove the holy grail, that does actually have to count as proving the null given the environment they created was to prevent the negative from being proven isn't decades and thousands of pieces of research without being able to prove the positive/aim time to call it?

And rebranding the name isn't 'offering something new', just as claiming to 'adapt GET' or 'just did it wrong' because they are still in denial. Times change, professionals need to be taught to accept and adapt what they do by firmly removing funding from proven bum steers after they have been done beyond the point of exhaustion and usefulness and still been found wanting and without glimmers of some gold at the end of the rainbow in anything other than someone's belief system they don't want to drop.

 

[bobbler]

But ME/CFS isn't typically like the flu (although can sometimes have flu-like symptoms). Lying in bed can definitely cause pain, fatigue and POTS. Worry about your body being broken can definitely cause symptoms. Those can be addressed. It's naive to think that your body will magically recover from ME/CFS by itself. It (generally) won't, otherwise we wouldn't be discussing it on this forum. Everyone would just naturally recover, which clearly isn't the reality.

I don't know. Both ME/CFS and the flu are illnesses that underlay the various symptoms someone gets with them and can be exacerbated by rough treatment etc.

They are at least different from what you've described which is theoretical symptoms with no underlying illness ie psychogenic.

SO this paragraph seems nonsequitur as to how just because people with ME/CFS don't recover in the way most with the flu find it lifts after x days they should be treated as if the illness is psychosomatic and need to learn to pretend the symptoms aren't there.

As most commenters have pointed out to you that is exactly how, and the circumstances that led to the harm of so many thousands of pwme being more severely ill with ME/CFS and disabled than they ever needed to become - by enforcing just acting as if there was no illness.

Are you selling old wine in new bottles?

 

[Utsikt]

I also think it is worth noting that I doubt there is actually a huge cost difference between eg a properly done genetics study and a properly done study into something like this if done to basic standards anyone should expect regarding basic ethics and decent recruitment and methodology in line with regulation/licensing (which is where behavioural/therapy-led have been allowed to cheap out, but also leads to useless findings because of this) ? Much cost relates to recruiting an appropriate sample in an appropriate way and double-blinding, objective triangulation etc. ie doing things properly ?

The cost of processing one sample for the SequenceME study is at least £700. So initial genetic studies can be terribly expensive because they require such a large sample size.

 

[bobbler]

The cost of processing one sample for the SequenceME study is at least £700. So initial genetic studies can be terribly expensive because they require such a large sample size.

PACE cost £5m remember all the way back in the early 2000s.

the cost of offering a course of 'brain retraining' [or insert other term for whatever rebrand same old wine] to an individual person? I've seen numbers from between £492 (per person entering treatment, no idea if that includes those who don't complete the course - from IAPT-LTC-Building-the-Business-Case.pdf), £877 (IAPT ave treatment costs in 2013paper , £177 for an individual high intensity session from: Cost of Improving Access to Psychological Therapies (IAPT) programme: An analysis of cost of session, treatment and recovery in selected Primary Care Trusts in the East of England region - ScienceDirect) and the following document talks about how bottom-up should really be ebing used (rather than IAPTs top-down approach) so on p18 has a list of the per hour cost of different types of therapist: Microsoft Word - Unit costs report 2013 JD-ed.docx

I don't know what the added costs of proper and fully-independent (so that it is double-blinded) assessment would then be on top of that.


Basically using retrospective cherry-picking of people you already had land at your clinic for whatever reason and not having to make your sample representative or use pesky conventions of methodology that are there to reduce the impact of/obvious vulnerabilities to bias is not just rubbish but also fast and cheap, hence some churning out so many poor papers in a year. If we imposed on them (as they should have been required to, or wanted to do themselves anyway) the requirements to do things in a proper methodological fashion in the way those who aren't 'therapist-led treatment' we need to be aware that they'd be asking for sums we might feel are better spent on something that hasn't already shown by repeatedly finding tiny 'effects' (and not testing the null) that there is little fruit at the end of the rainbow even when methods have been such that they'd inbuilt bias.