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

[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.

 

[jnmaciuch]

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

I don't think anyone's doubting that can be true in theory. I and others are arguing against the idea that worry of a broken body is actually causing the symptoms for the vast majority of pwME. Many of us are regularly pushing ourselves into PEM just to be able to do something fun, for example.

 

[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.

 

[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.