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

[Utsikt]

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.

LP is ~£1400 in Norway, but our currency us very weak atm.

But even though the cost would be higher than a whole genome sequencing, you would need far fewer samples.

MINIRICO has 310 participants and got a grant of ~£1M.

 

[Kitty]

But ME/CFS isn't typically like the flu

I never claimed it was. I said natural recovery is like recovering from the 'flu. Which it is, and just like recovering from the 'flu, you can be in no doubt about it.

Recovery's normal thing, you don't stop to ask questions. You go straight back to your prior level of activity, especially when you're 25 years old and have much more interesting things to do than hang about the house being afraid of...well, anything. As a teenager I'd been a good swimmer, a keen hillwalker and a passable contemporary dancer, so I started building up my fitness.

Worry about your body being broken can definitely cause symptoms.

You seem to have missed the bit where I said I spent two decades of ME/CFS categorically not worrying that my body being "broken" because I didn't know I had a chronic illness?

(I do know now, of course, and I still don't worry about it in the slightest. It is what it is, and it's far from my main interest in life.)

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.

We don't have the stats for ME/CFS, so none of us can claim knowledge either way. But in ME/CFS-like long Covid, recovery may be more common than failure to recover, and it's entirely plausible the same thing happens in ME/CFS. So far, nobody's bothered collecting the data in a systematic way.

It may partly depend on how similar or different ME/CFS turns out to be to the post-viral syndromes that follow glandular fever etc, and can look very like ME/CFS with PEM. If we found both follow the same pathway but one of them doesn't eventually switch away from it, persisting ME/CFS would be the outlier. Recovery would be the norm.

 

[dundrum]

You seem to have missed the bit where I said I spent two decades of ME/CFS categorically not worrying that my body being "broken" because I didn't know I had a chronic illness?

(I do know now, of course, and I still don't worry about it in the slightest. It is what it is, and it's far from my main interest in life.)

That's great, but it is an issue for many patients. It's a mistake to think that everyone's illness is exactly the same, or that "worry about the illness" is the only problem (it isn't), or that it doesn't affect a significant number of patients (it does).

 

[dundrum]

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?

No, I've never said any of that. It just sounds like a strawman. Please don't assume I'm not intimitely familiar with the illness (I am). This is about acknowledging that certain factors may be important for some patients and they should be addressed. It does NOT mean we should automatically pigeon hole all patients as being in the same boat, or saying that this one issue (e.g. fear of the illness) is *all* that ME/CFS is about (it clearly isn't, and I never said it is).

 

[Utsikt]

No, I've never said any of that. It just sounds like a strawman. Please don't assume I'm not intimitely familiar with the illness (I am). This is about acknowledging that certain factors may be important for some patients and they should be addressed. It does NOT mean we should automatically pigeon hole all patients as being in the same boat, or saying that this one issue (e.g. fear of the illness) is *all* that ME/CFS is about (it clearly isn't, and I never said it is).

The people you defend say that it mostly is. And their theories assume that it mostly is.

So if you don’t agree with that, I would suggest stating it outright the next time you say you approve of their theories. How are we to know that you disagree on that specific point if you don’t mention it?

So I don’t think it’s fair to classify it as a strawman because that implies ill intent - at best (edit: most) it’s a misunderstanding that you played a part in.

 

[bobbler]

No, I've never said any of that. It just sounds like a strawman. Please don't assume I'm not intimitely familiar with the illness (I am). This is about acknowledging that certain factors may be important for some patients and they should be addressed. It does NOT mean we should automatically pigeon hole all patients as being in the same boat, or saying that this one issue (e.g. fear of the illness) is *all* that ME/CFS is about (it clearly isn't, and I never said it is).

Oh dear that must have been how I read the interaction. I've pasted the trail of that conversation below - happy for you to correct and explain?

This isn't just a story, this happens all the time. These patients did have ME/CFS and met the criteria, but then they got misinformed, they perhaps naturally recovered but didn't realise it until they experimented. The excessive fear (which is understandable for a strange illness which tends to punish over-exertion) prevented their recovery.

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.

My reply:

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?

 

[bobbler]

The people you defend say that it mostly is. And their theories assume that it mostly is.

So if you don’t agree with that, I would suggest stating it outright the next time you say you approve of their theories. How are we to know that you disagree on that specific point if you don’t mention it?

So I don’t think it’s fair to classify it as a strawman because that implies ill intent - at best it’s a misunderstanding that you played a part in.

Agreed - it would be useful perhaps for clarity to state it is a treatment for those with the condition of 'fear of exercise', which might well be something actually less prevalent in the ME/CFS population than outside of it.

It is fine to have an anecdote from someone with any other comorbidity. BUt you'd expect them to be clear it is an anecdote applicable to them only, and clear they are talking about their own other comorbidity and it is encumbent surely to be utterly distinguishing this from being advice or representative 'for those with ME/CFS' particularly when talking to a vulnerable audience of people, on a website labelled for that illness (so would be assumed as the default), for whom that precise mis-selling of the very same paradigm and indeed in the debunked 2007 'fear-avoidance false beliefs guideline' even more significantly was errantly actually imposed for so many years. An imposition which caused great harm to so many that they still live with, and still has not been properly lifted to ensure others aren't being harmed by it today, or amends made etc.

I think it is also important to be accurate on the source of statistics when making claims of prevalence, a point we have made on many other papers, lest inference or confusion result.

 

[bobbler]

LP is ~£1400 in Norway, but our currency us very weak atm.

But even though the cost would be higher than a whole genome sequencing, you would need far fewer samples.

MINIRICO has 310 participants and got a grant of ~£1M.

But if you are using a smaller number of samples then you need to/should be ensuring that is both representative of the wider population you intend to extrapolate claims to, and appropriately powered.

Which should/would add in costs at the recruitment and retention (so that it still meets both of these criteria after dropouts, or ideally doesn't have them).

Something like an expansion of the PhysiosforME heart rate in the home probably has another cost balance and sample size etc.


My point is that the sums if it is being done to a similar level as if it was meeting the regulations of those areas under licence ie not biased etc it will be not insignificant costs - and one might prefer, given the starvation of funding to the area where there are chances of something useful being discovered, to not redirect such a size of sum in the near future in the hope that more ''proper proof' will suddenly change the attitude vs having an alternative treatment that works better being available to offer. I can see that being a fair suggestion by @Friendswithme

It is the sophist 'no known cure' that is being used to justify offering what shouldn't be being offered currently as much as any other one-liner, so having other research and possible useful medications might shift the balance of clinic staffing and paradigm just as much/more?.

It is a hard balance, but we also need to remember that each time people from this background are funded for whatever rationale to do said studies then some of the samepl have to do the actual treatment and that centre gets funded and establishment for that additional period of time where the alternative doesn't (and might not yet exist, or needs to move onto researching another condition).

It is probably an interesting thought experiment discussion for a thread of its own (which might already exist) as we battle a number of issues, whether this would be our winning bet right now vs other priorities.

 

[Utsikt]

It is a hard balance, but we also need to remember that each time people from this background are funded for whatever rationale to do said studies then some of the samepl have to do the actual treatment and that centre gets funded and establishment for that additional period of time where the alternative doesn't (and might not yet exist, or needs to move onto researching another condition).

Are you talking about BPS studies here? If so, this is a point that I had not considered. The money to run a BPS study goes to the practitioners (or at least to pay their salaries).

Just to be clear: I don’t think there is anything in BPS research that makes it appropriate to conduct a BPS study on ME/CFS right now.

 

[bobbler]

Are you talking about BPS studies here? If so, this is a point that I had not considered. The money to run a BPS study goes to the practitioners (or at least to pay their salaries).

Just to be clear: I don’t think there is anything in BPS research that makes it appropriate to conduct a BPS study on ME/CFS right now.

yes and no - whoever it is that is funded to do a study we need to remember that such funding tends to be a rolling stone in their existence. Just the way universities etc work. So whilst some research might be imminently urgent as a priority, it is also worth bearing in mind (though not prioritising) the idea of building a research base eg of people from whichever backgrounds and areas who have experience working on the illness, and institutions that have the infrastructure to work with patients.

Just like clinics finally being like normal clinics for any other biomedical illness and having biomedical physicians and/or scientists as part of them, maybe nurses then provides a base for education and research and recruitment from there are they are in front of and allowed to actually look at and measure in medical ways (which therapists are not - hence why I suspect the big push to keep patients cut off from ever being allowed to see a doctor by insisting on clinics being staffed as they are, cuts out anyone from being able to speak sense in the debate or an individual case, as we see when those with very severe ME end up in hospital and they claim 'only an NHS CFS specialist will be listened to')

once you start research getting into the figures that are involved with doing any substantive research any proper way ie other than the shortcuts and bias involved with some of the bps stuff then you are setting something up for x amount of time, and that gives that something a place and establishes it.

I agree we, ie including everyone beyond pwme, need a debunking unit to cut the huge sector of the health service and its spending that is now just psychosomatic non-medicine as it can narrow down and see precisely which, if any, conditions or individuals might benefit from anything they offer instead of it being imposed errantly because it's a supply-led (funded) situation that creates tail-wags-dog (diagnose with x because that is the only dept that doesn't have a closed waiting list ie the only place we can refer to, and said place never checks diagnosis) problems to keep its territory/reason for being (claimed demand based on footfall of who gets sent through their door).

It probably needs to come from an alliance though given how many other conditions it seems to be drifting into and you know 'the politics' and what is being asked for people to do vs their careers and getting some traction.

In a politer terminology of course there are clinical trials units at various places across the country so I don't see why there shouldn't be at least one with similar stringent standards testing these other areas that are drawing large % of funding that could also bring independence from the hierarchy that dogs and makes blinding so apparently difficult etc.

As I was trying to hint this is a bit of a 'once you break the seal' discussion that might be better on a different thread.

 

[JemPD]

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.

Ah, yes a very good point thank you.

I'm new to smartphones & only view S4 through a laptop. I have edited my post accordingly

 

[jnmaciuch]

@Friendswithme I did actually get a free copy of Lekander's book and spend some time reading the first few chapters. You were right that he is a very good writer, and makes the neuroscience that he discusses very accessible to a layperson. After getting through several chapters, armed with my own prior knowledge of science, I realized that his ability to write about science accessibly is doing a lot to obscure a rhetorical trick that he employs over and over again.

What I see him do repeatedly is take a robust scientific finding and describe it in terms of the possibility that the brain could end up doing something like generating a feeling of fatigue [added:] due to stress or feeling unsafe. At many points, he even makes a show of discussing the limitations of how those studies can be interpreted. But that really just functions as another rhetorical trick for credibility, since he fails to apply the same limitations for the speculations that ground his argument. It's entirely possible he's not doing it maliciously, it's just something that is arising from really believing in his own theory.

One example is with the phantom limb studies that have already been discussed in other threads. What is likely happening in the case of phantom limbs is a repurposing of neurons previously used to process pain signals from one part of the body, leading to a mis-attribution of what a stimulus is actually coming from.

In this case ,"The Neuroscience" shows that in one very specific context where there is a humongous change in the sensory input to one part of the brain, it can lead to the perception of pain from an impossible source. What "The Neuroscience" definitively does NOT show is that this same mechanism (or anything similar, even) is at play in ME/CFS, or chronic back pain, or what have you.

The only thing that "The Neuroscience" shows is that the brain can do some cool things we wouldn't initially expect. It categorically does not show that the brain does do X or Y cool thing in any other context. Simply the possibility of something occurring is poor evidence that it actually is occurring.

 

[jnmaciuch]

The only thing that "The Neuroscience" shows is that the brain can do some cool things we wouldn't initially expect. It categorically does not show that the brain does do X or Y cool thing in any other context. Simply the possibility of something occurring is poor evidence that it actually is occurring.

And to this point, many such as yourself might point to some patient testimonies, or some small gains in clinical trials, to show that their success is retroactive proof that the theory actually is true. To that I would say: it really, really isn't proof.

If your theory relies on the fact that someone's perception and interpretation of their own bodily state cannot be trusted at face value when they are sick, you simply cannot claim that their perception and interpretation of their body after the treatment is proof of its correctness and effectiveness. You're quite literally saying that you can't trust the patient when they say it won't/doesn't work, but you should trust the patient when they say it does work.

That's why, as many have argued across different threads, a subjective outcome measure will never be effective proof that the treatments work. @dundrum I can understand why you say that you need to use subjective measures when nothing else exists, but the nature of any cognitive restructuring technique is such that it inherently invalidates their use. I really really hope you can understand that.

Even if we could prove that these therapies "actually work" by an objective measure, it's not proof that the underlying theory is true. You said yourself @Friendswithme that there are many examples of severe pwME "relapsing" over and over again after somaticisation techniques. In fact, many pwME report similar patterns from things like supplements and off-label medications. Just because a biological mechanism enables you to somehow push through what is wrong for a short period of time does not mean it's reversing the original problem.

What you might be observing in these situations is a very effective mobilization of some backup mechanism that can compensate for whatever is actually wrong for a short period of time. But the fact that relapses keep happening would then be evidence that this backup mechanism cannot be employed long term, and you simply don't know what the risks are of continuing to employ it. And again, because of lack of actual evidence, wild speculations are all that can be done here.

That's why many of us can never get behind a therapy that literally requires gaslighting patients to distrust their own perceptions. If it's:
1) not proven that you're actually right, and
2) you have no way to make sure they're being effectively "deprogrammed" after giving it an honest go, and
3) there's no way to make sure that there is no consequence of failing to get better from this method (wasted money, being disbelieved by family and medical professionals, pushing themselves so much their baseline condition permanently worsens etc.),

then the harms of continuing to push this method as an effective treatment are very substantial!

 

[Andy]

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.

Depends on the what kind of genetic study is being done. SequenceME, if funded, would be analysing the full genome; DecodeME, which as a genome wide association study looks at approximately one million locations of the genome where people are most likely to differ, received £3.2m in initial funding to analyse a planned cohort of 25k. While £3.2m is a considerable amount of money, in research terms it's not that much.

 

[Utsikt]

Depends on the what kind of genetic study is being done. SequenceME, if funded, would be analysing the full genome; DecodeME, which as a genome wide association study looks at approximately one million locations of the genome where people are most likely to differ, received £3.2m in initial funding to analyse a planned cohort of 25k. While £3.2m is a considerable amount of money, in research terms it's not that much.

Thank you for explaining!
I believe I was thinking about only whole genome sequencing when I wrote ‘initial genetic studies’, but I realise now that it doesn’t have to be!

 

[Kitty]

That's great, but it is an issue for many patients.

But how do you know?

People here seem to be telling you the opposite, and you haven't offered any evidence of it. You haven't offered very much evidence of anything, really, which is why people keep asking for it.

Any biomedical researcher who comes here and makes assertions, then avoids providing evidence to back them up—and uses diversionary tactics like answering a question that wasn't the one asked—will get exactly the same response.

All we want is good science. Having informed, experienced people try to pick apart hypotheses and papers is crucial to progress, and experienced researchers recognise that opportunity for what it is: a gift.

We want them to succeed every bit as much as they do, but they won't get there on conjecture, assumptions and sloppy trials. Nobody ever did. As soon as you see why it's so important to keep insisting on robust methodology and reliable evidence, you won't be able to miss the glaring problems with the BPS-informed research that's been done so far.

 

[jnmaciuch]

Also, if the same group keeps putting out paper after paper with the same methodological issues, I don't think it is the responsibility of folks on this forum to rehash the same discussion for the umpteenth time. Someone commenting something along the lines of "same crap, different day" is entirely justified.

It's hardly "ad hominem" to make reference to an ongoing pattern of disregard for basic standards of research when the paper in the thread just continues that pattern that has already been discussed at length.

In fact, I've seen tons of instances where folks will chime in to say "at least this paper improved how they measure XYZ" in a paper's favor, even if they think other issues invalidate the findings.

 

[dundrum]

But how do you know?

People here seem to be telling you the opposite, and you haven't offered any evidence of it. You haven't offered very much evidence of anything, really, which is why people keep asking for it.

Because patients are saying it all the time. I'd prefer not to point out individuals, but if you look you will see it is true, and I can certainly point out specific examples in private. (One was mentioned earlier, but was removed). There are many studies that have looked at this as well, and the PACE trial was based on it (you can look at the evidence they reference in their paper). And yes, I'm aware of the issues with the PACE trial.

We want them to succeed every bit as much as they do, but they won't get there on conjecture, assumptions and sloppy trials. Nobody ever did. As soon as you see why it's so important to keep insisting on robust methodology and reliable evidence, you won't be able to miss the glaring problems with the BPS-informed research that's been done so far.

Right now all we really have is patient experience. You really have to believe patients when they say they are afraid to exercise, or are worried their mitochondria are damaged, just as you have to believe patients when they say they are experiencing symptoms.

 

[Utsikt]

There are many studies that have looked at this as well, and the PACE trial was based on it (you can look at the evidence they reference in their paper). And yes, I'm aware of the issues with the PACE trial.

Are you aware of the issues with the studies that PACE was based on?

 

[dundrum]

then the harms of continuing to push this method as an effective treatment are very substantial!

[/QUOTE]

I think you have a number of misconceptions here. These programmes aren't saying random things about the brain. They are based on proven neuroscience, e.g. that fear, stress and expectation upregulate pain. Also, it's not about gaslighting yourself, ignoring symptoms or not trusting your perceptions.

I think that if done correctly there are no serious harms in doing these things. The problem is that when one specific technique is presented as "the cure", and it doesn't work, then patients can blame themselves. I think it's best for patients to research this and apply it to their own situation, looking at the evidence and at various programmes. There is a huge amount of completely free info out there.