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

It started in 2006. Klimas is one of the authors of ICC, which was published in 2011.

 

Since the factsheets are supposed to be factsheets and free from beliefs and feelings I think it could be very valuable if you could point out where exactly you got that impression from? Where there specific passages or wordings or is it rather from a more general reading?

The factsheets are factsheets so they are focused on hard evidence. Vague ideas on speculative hypotheses in reference to hardly scientific notions from neuroscience and other ideas won't make the cut. Similarly you should note that there is no reference to biological mechanisms with unsubstantial evidence in the factsheets, prevalence numbers aren't overestimated etc.

I think you might find that a few (though not enough) psychologists/psychatrists are active on S4ME, others have collaborated with psychologists (Brian Hughes to name one) with others being friendly with psychologists/psychatrists and others visiting them regularly.

 

I think it's just that it can't get to what's actually causing ME/CFS, and we're in such urgent need of disease-modifying drugs. The same goes for all of us, but especially the severely ill people who can't even let daylight into their rooms without triggering horrible symptoms. If you look at it from that point of view, it's not surprising people get a bit impatient with psychological approaches—at best, they're a distraction.

But in the hands of a therapist who really understands ME/CFS, it could potentially have a role with management. I'd have loved to have a counsellor support me with pacing when I was first diagnosed! Struggling to restrict activity enough to stay relatively well seems almost universal; we're all desperate to be able to do more, so we keep trying to squeeze extra things in despite knowing the likely outcome. Not everyone would want pacing support, but some might really value it.

 

Some examples: no mention of stress as a precipitating factor. Saying that graded exercise has been "not shown to help", then talking about surveys. Similar for CBT. That isn't an accurate portrayal of the evidence.

 

And yet there are patients who manage to recover from that state using psychosocial tools. It's an assumption to say it "can't get to what's actually causing ME/CFS, and we're in such urgent need of disease-modifying drugs". There are two possibilities: either these patients recovered naturally, or the things they did helped them. It would be useful to look carefully to see which one is the case, and whether there is anything to learn.

 

Okay, at this point, I think it’s just going to go in circles forever.

 

Exactly this. They don't get it.

You can tell they are so set on their point of view. Always this talk of 'fear'. We are not children riddled in the fear they talk about. Above quote.
.

 

I would say there's an aversion to claims of psychological causation from observational studies designed to find associations only and to claims of psychological treatment from unblinded trials relying on subjective outcomes. Since there is a constant stream of such studies in high profile journals, it is understandable that commentary on the forum would come across as "anti-psychology."

 

Yes, attacking crap science is understandable and laudable. It was more calling people "gullible" if they get suckered into believing their mitochondria are broken after doing a dubious test, saying that stress is purely emotional, or that if someone has a stress related illness it's their own fault, that there's no point looking at psychosocial treatments as they can't help severe people, that the PACE trial is "fraudulent", etc. (And yes, I'm aware that you said it is fraudulent. Not sure I really want to get into that discussion, other than to say I'm aware of your work, and disagree with your reasoning).

 

And given the massive amounts of harm and loss caused by psychology, it should not be surprising at all that there is an aversion to psychology - it is something that has been learnt by the patient community through experience. The fact that psychology can't figure this out, or won't admit to it, just shows the massive lack of insight that the field has.

 

Please don't use the broken mitochondria again. It hurts and is very denegrating.
Every ME/CFS patient has to find out for themselves what's wrong and how to fix it.. GP's don't know anything, specialists even make us into non-patients.
I don't have any medical training, so I might get things wrong, but don't blame me for that.

I did a one and a half year psychotherapy training, so I do understand psychology.
But I do have an aversion to CBT, claiming they can fix ME/CFS but not delivering real results.

 

Stalemate

 

Have you read my Expert Witness statement to NICE?
In my opening analysis I point out that research in both biomedical and psychological fields has been generally very poor. The difference is that where biomedical and pharmacological researchers have subjected theories to reliable tests the psychologists have made use of flawed methodology, have persistently denied their manipulation of their results and have continued to foist their treatments on patients despite the evidence being that they do not work.

It is hardly surprising that there is an aversion to psychology. Biomedical researchers genuinely appear to be interested in providing answers. The psychologists appear only to be interested in promoting their own ideas and generating jobs for their friends. They even tried to Persuade Gill Long to pretend the evidence on evidence quality didn't exist and to go back to recommending CBT and GET. "There is a way" someone suggested to her.

Patients have every reason to be averse to this sort of behaviour. I find it deeply embarrassing that I beg to a profession that allows this sort of behaviour to go unchallenged. It is fraudulent, our and simple. If you remove an outcome measure from a trial because your friends found it didn't give the 'right' answer and put that in your steering committee minutes you cannot expect to be viewed otherwise.

 

Graded exercise therapy has not been shown to help. It has only been tested in open-label trials, and we have explained to you why subjective measures in those trials can't be taken at face value, and yet you continue to talk as though they can be. I'm genuinely curious as to why you do, and have asked you specific questions to try to get to the bottom of it, but you haven't answered.

That's your perfect right, of course, but this issue of your taking subjective measures at face value in open-label trials lies at the heart of much of the disagreement between your position and that of the rest of the forum, and why we're going in circles over and over.

So I'll ask again, and you're completely free to choose not to answer again:

(1) Would you accept that if patients know that they're receiving a treatment and they know that it is supposed to be effective, you can't trust their responses when they say they feel better? If not, why do you think that drug trials are double-blinded with placebo controls?

(2) In an open-label trial with subjective measures, do you think that bias can only make a genuinely positive effect bigger, or would you agree that it can make a null effect look real, or a harmful intervention look like a helpful one?

(3) If all there is, are badly done studies, do you think that means that we have to treat their results as though the studies weren't badly done? If so, what it is about them being the only studies available that means that their results should be taken at face value?

(4) If one group of scientists says we should accept that open-label trials with subjective measures should be taken at face value even when it's illogical and other scientists disagree, should we accept it?

Your being here, and being willing to discuss your views with us, is a rare opportunity for us to understand why people are willing to take subjective measures in these trials at face value but for all the thousands of words expended so far, we seem to be no further forward. Perhaps you can help us understand.

You mentioned earlier the positive finding for the 6MWT in PACE, and the harms surveys. I'll address those in a separate post.

 

@dundrum

No, there is no aversion to psychology. I lead a group of about 1000 ME/CFS patients in my country and many of them visite psychologists/psychiatrists. Like in many chronical conditions, the life is not easy so they do psychotherapie, take AD and so on. In this case we dont have any problem with psychology.
The problem starts when you again and again say that GET/CBT help us. Listen to the patients. In my group there is noone who would say that GET/CBT helped him. You know many especially new patients they actually do a kind of GET therapie. They go throught their limits every day. I warn them but they often dont listen. And it always finish with a crash and huge worsening of your health and often forever. The only thing which help is to respect your energy limits, what is opposite to GET.

I can tell you my example. I pushed myself several years day by day and I finished with very bad worsening of my health. I was the lucky one that my health started to improve slowly after 2 years. The only thing which I did was respecting my new energy limits. I could walk 10 minutes a day and sit 1 hour with my computer, the other hours I had to lie down. Than suddenly one day I woke up and I could do 30 minutes walk. So in this disease it works differently. It doesnt help to increase slowly your daily activity but you have to respect your limits which gives you chance to improve your limits.

So go to help the patients, they are often in a very desperate situation, nobody is against psychlogy but dont force them to the therapies which dont work.

And yes, many patients are angry because if you check the history the psychiatry/psychology stopped the biomedical research in ME/CFS for at least 40 years. The grants for ME/CFS biomedical research were blocked because many psychiatrists in the grant commisions were against biomedical research and always said that ME/CFS is psychosomatic. You didnt give us the chance for better life to research our disease and this is the biggest scandal.

The big problem of todays medicine is if we dont know what´s wrong with the patient it has to be psychosomatic :-(

Try to listen to the patients - you can learn a lot from them and focus on how to improve psychology.

And believe me - for all of us if GET would work, this would be the easiest way to improve our health, everyone would do it. We dont know nasty drugs, many of us were very sportif we would love to do sport again. But it simply doesnt work.

 

@dundrum, relating to the 6MWT in PACE, this is from the critique of PACE by Wilshire et al.:

A number of other secondary outcome measures were collected at 52 weeks... distance walked in six minutes ... Here, 69% of the GET group completed the test, and walked approximately 10–12% farther in six minutes than the 74% of Controls who completed the test. This small difference was statistically significant (based on an available case analysis), but given the high and uneven drop-out rate for these outcome measures, this result should be treated with caution... For the fitness measure [VO2max, estimated using the step-test method], a simple one-way analysis of variance performed on the summary data extracted from ([6], Figure 2) failed to reveal a significant effect of treatment group, F(3,425) = 0.368, ns. ​

So here is why the GET group's relatively higher walking speed in PACE doesn't show GET to be helpful:

• The gain, even if taken at face value, is too small to be considered 'helpful' in the real world.
• There were so many drop-outs that the results can't be taken at face value.
• The 6MWT was said by the PACE authors to be an objective measure, but as others have said here, a PwME can make a choice to push themselves to walk faster for a short time if they're willing to accept the payback in terms of PEM. So this result can't be taken at face value in this open-label trial.
• The 6MWT is contradicted by the actually objective fitness measure which is based on a heart-rate calculation not presumably able to be influenced by patients simply trying harder during the test.

Harms next.

 

@dundrum, relating to harms in PACE, again from Wilshire et al.:

The adverse events measures collected during the trial included: serious adverse events (death, hospitalisation, etc.); serious deterioration (a broader category that included a serious adverse event, sustained decrease in self-reported physical function or overall health, or withdrawal due to worsening); and non-serious adverse events. Serious adverse events were significantly more prevalent in the GET group (8%) than in the Control group (4%); there were no other statistically significant group differences.​

[...]

Turning now to safety issues, there were few group differences in the incidence of adverse events, and the researchers concluded that both CBT and GET were safe for people with CFS. This finding – particularly that relating to GET - contrasts markedly with findings from informal surveys conducted by patient organisations [38, 39]. In these surveys, between 33% and 79% of respondents report worsened health as a result of having participated in some form of graded exercise programme (weighted average across 11 different surveys: 54% [39]). Of course, in such surveys, participant self-selection may operate to enhance the reporting rates for adverse outcomes. However, this finding is so consistent, and the number of participants surveyed is so large (upwards of 10,000 cases), that it cannot be entirely dismissed. One likely reason for the discrepancy between PACE’s findings and those of patient surveys is the conservative approach used in PACE’s GET programme. Patients were encouraged to increase activity only if it provoked no more than mild symptoms [40]. Unfortunately, compliance with the activity recommendations was not directly assessed: actigraphy data were collected only at trial commencement [1] and never reported. This is a significant omission, since there is evidence that graded exercise therapies are not always successful in actually increasing CFS patients’ activity levels [41]. Even those who comply with exercise goals may reduce other activities to compensate [42]. The lack of improvement in fitness levels in PACE’s GET group does suggest that participants may not have substantially increased their activity levels, even over the course of an entire year. Also, even though the majority of GET participants chose walking as their primary activity [2], this group demonstrated an average increase in walking speed of only 10% after an entire year (increases of 50% or more have been observed in other patient populations [35]). Given these features, it is inappropriate to generalise the safety findings from PACE to graded activity programmes more widely, especially as they are currently implemented in clinical settings.​

So this is why we can't rely on safety data from PACE (the largest and hence most definitive study of all the GET/CBT studies). In the absence of reliable safety data from these poorly conducted studies, it's worth looking at survey data but survey data is itself subject to biases and shouldn't be taken as conclusive proof of cause and effect, which is why we don't claim in our factsheet that it proves that GET causes harm.

[Edit] There is generally a lower bar for reporting harms in medicine because of their serious consequences.

 

I think something that would be useful to note is nearly none of us started sceptical of psychiatry or sceptical of GET/CBT.

Large chunks of us got a mysterious illness, finally were diagnosed, and were provided with GET/CBT, we were so relieved. So glad we got answers.

We ended up putting literally everything we had into those therapies. Believing they would cure us.

And yet, none of us got better, even though we did what we were told, many of us got worse. And when that heppened, we were told by these people we deeply trusted that it was our fault. That we were just lazy. That we didn’t really want to work. Imagine being told that when you’d do anything to get back everything you lost in your life.

So instead of assuming we have an irrational fear of psychiatry or something. Perhaps look into how psychiatry has treated us. Knowing full and well the evidence to treat us that way is spectacularly lacking.

Do gay people have an “irrational fear” of gay conversion therapy?

 

What misunderstanding?

So it started 3 years after the CCC? That means there is no excuse for using Fukuda.

There is no evidence for stress as a precipitating factor. We’ve been over this many times already. And GET was not shown to help in studies. The same for CBT.