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

[rvallee]

There are many experiments that look at fear avoidance in ME/CFS, and there are many studies that have looked at stress as a trigger, and the stress response in patients.

And none of those have validated anything. Making claims is easy. No one has proven anything, and for most of us it's a basic "pissing on our legs and telling us it's raining" because we have none of the thoughts, beliefs and behaviors they attribute to us.

What you are arguing is, comically, the same thing they are arguing: people say those things, and experiments were conducted. And none have confirmed anything. This is how this ideology started, and it's how it's ongoing decades later. This is not a valid way of doing things.

 

[rvallee]

The only researchers who don't come here are the ones who cannot defend their work in the light of legitimate criticism. The quality researchers have stayed with us.

This is a very tired old meme that researchers are put off by the patients. The only person who genuinely seems to have been put off was Simon Wessely who, in his own words, could have handled things a bit more diplomatically.

Actually, no one has really bothered to collect them, because there is really no need, but I have seen far more quotes from researchers, including brand-new researchers who have just come along because of Long Covid, saying they absolutely love the relationships they have built, with individual patients, and the community as well.

Also, many researchers and clinicians who have unfortunately developed ME/CFS, or similar illnesses, have all said the same. In fact collaboration with the patient community has been a cornerstone of the NIH RECOVER initiative, even though it was on shaky grounds at first. I'd say that there are easily 100x positive comments about the patient community than negative ones, but like most things in life, the bad ones tend to carry more. Even though most of the specific claims have actually been debunked.

The only bad quotes I have seen are from those who push the psychobehavioral "fear avoidance" model, and their reasons are well-detailed in their own research: they know most patients don't buy their claims, that it's not relevant to us and that we don't want anything to do with them. Which is fine, and no one should have a genuine objection to that, just like no one with cancer should be criticized for not being interested in seeing a chiropractor who tells them they can fix their illness this way.

 

[dundrum]

And none of those have validated anything. Making claims is easy. No one has proven anything, and for most of us it's a basic "pissing on our legs and telling us it's raining" because we have none of the thoughts, beliefs and behaviors they attribute to us.

What you are arguing is, comically, the same thing they are arguing: people say those things, and experiments were conducted. And none have confirmed anything. This is how this ideology started, and it's how it's ongoing decades later. This is not a valid way of doing things.

I think it depends on what you mean by "confirmed". There are many studies that have shown that stress is a precipitating factor, and that fear avoidance is correlated with improvement in CBT trials. I see that you yourself posted a comment saying that you had a very stressful life pre-illness, but you don't believe that it caused your illness (at least, that is my recollection of your comment, but feel free to correct me if I've got it wrong). Many patients themselves acknowledge that they were "overly afraid". This doesn't mean the illness is caused by fear avoidance, just that it's a factor for some patients.

Perhaps you want to be able to point to specific brain networks and have a machine show exactly what is happening in the body. I'd love that too, but it's unrealistic right now. We have the evidence we have, and continue doing more studies. It doesn't mean we have nothing, or should reject anything that doesn't "prove" what causes the illness. Of course, this can be used incorrectly against patients, as it was in the PACE trial. However that isn't a reason for just rejecting the science, as that isn't helpful either.

 

[dundrum]

We are actually mainly saying that this is not relevant to our experience, that the claims they make are far outside of what is evidenced, and that claims that this is an effective treatment paradigm for ME/CFS is simply false. Which it is, there is simply no evidence for the relevance of these things to this illness.

Except it is relevant for many patients (who say they recovered after addressing this fear), and we have studies that have looked into this. It doesn't mean that it is a factor for *all* patients, but it certainly does seem to be important for some. There definitely is evidence, including testimony from patients themselves. We have to believe patients when they say this (assuming they meet the criteria). Otherwise we should perhaps just reject the experience of all patients, as currently every aspect of the illness is entirely subjective.

 

[bobbler]

Well, that's simply not true, and is a classic example of why people avoid joining this forum, including myself. There are many biopsychosocial studies with objective outcomes, e.g. grey matter, cortisol awakening response, autonomic response. The problem is that these aren't really biomarkers for ME/CFS. There is a lot of talk on s4me about using walking distance as an objective marker, but the problem is that walking distance isn't a biomarker of the illness either. Mild patients (who are the ones in these studies) are not likely to show any difference in walking distance when they recover.

The reality is that at the moment, self-reported outcomes are the only measure of the illness. That doesn't mean that self-reported outcomes are useless though. There are things that can be done to reduce bias, such as having an attention control, and having long-term follow-up. It may also be possible to have a trial on bedbound patients, as they are likely to show increased activity.

It would be very worrying to suggest trials of bedbound patients without mentioning the ethics given a big problem with bps is many of those following it out right state they will not study harms.

And safety has been an issue examples by the parliamentary debates where the outcomes from eg Pace for individual patients left more disabled are described. And sadly many noted they were told they were ‘recovered’ despite being eg in a wheelchair they hadn’t been in on entering the trial

how would you keep those who are already in a very vulnerable situation and whose health is so that the risk of further harm is very present just from small things actually safe - rather than just claiming them as drop-outs rather than the outcomes etc?

 

[bobbler]

There you go assuming bad faith. I'm very familiar with how scientific methodology works, but you've poisoned the well before we've even started discussing specifics, so it's pointless going further. That's exactly the problem that I see all the time on s4me, and people aren't going to join while this happens. This isn't how scientific discussion works.

In this instance, it’s a complete no-go because it introduces an unknown, but substantial amount of bias through a myriad of mechanisms.



You might want to look into that more. Those studies were downgraded due to indirectness, not due to the quality of the studies themselves. There is a difference.



Yes, I just did that with your comment above.



Stress reduction.



Ok, perhaps you can give the correct term for your bad faith comment. I'm at a loss.

1. I can’t understand fully - it was a response to the point on unblinded subjective studies being a problem . Yet you’ve appeared to suggest the issue is blinded studies with objective measures to triangulate/check against would have an unknown vast amount of bias.

it can’t be more than if you do unblinded so everyone knows which condition everyone is in? Which is why placebo and double-blinded is used for anything regulated/licensed eg drug trials - because there is no point if you don’t know if you are nudging those who with be in control and therefore their results subtracted from the total ie work against. It’s just logic

I don’t understand how telling investigators who is in which group makes it less biased?


Quote2 reply. No it was assessed as being low quality and very low quality.

Indirectness isn’t high quality is it? and it’s an issue if you aren’t measuring the right illness or right thing?

quote 3 reply.
Stress reduction is an outcome rather than a bps treatment which doesn’t necessarily achieve that claimed intention.

I’m happy to have a close look at the exact named literature you point to that achieves useful objective improvement in me/cfs and which stressors they removed and by what.

 

[bobbler]

There are many experiments that look at fear avoidance in ME/CFS, and there are many studies that have looked at stress as a trigger, and the stress response in patients.

But none of them have been methodologically sound? Happy for you to post one that is here

 

[bobbler]

Please use the contact moderators button at the bottom of any post you think breaches forum Rule 1.

Sadly for us we do look at them - hence why our comments tend to be on details within them

im pretty wary about the lack of examples provided with these broad claims

 

[bobbler]

Whilst their research is incompetent I'm not sure that they are - they are clearly very good at optimizing their careers.

Watched an interview on a totally different topic tonight for a short time and saw the phrase “we need to remember that ignorance is not a crime but wilful ignorance is”

strangely it was only a few days before that I’d learned that in eg US law that term wilful ignorance is indeed a crime hence worth flagging that whilst other similar terms communicate something similar eg chosen ignorance those in the right positions actually do have obligations to not pretend not to read something pointed out to them (which they probably already know or should now anyway) as if it covers them etc

just an interesting snippet I thought I’d note somewhere

 

[Utsikt]

There are many studies that have shown that stress is a precipitating factor, and that fear avoidance is correlated with improvement in CBT trials.

‘To precipitate’ means ‘to cause something to happen suddenly or sooner than normal.’ We don’t have any proof of causality.

And correlation does not in any way imply causation. So if you believe there the correlation is relevant, you have to propose a testable and scientifically plausible hypothesis.

How has the concept of fear avoidance been validated?

Many patients themselves acknowledge that they were "overly afraid". This doesn't mean the illness is caused by fear avoidance, just that it's a factor for some patients.

How do we know that it is a factor for some? Has anyone proven causality? If not, all we have is correlation and that doesn’t mean much at all.

Take these papers as an example:
https://tylervigen.com/spurious-scholar

There definitely is evidence, including testimony from patients themselves. We have to believe patients when they say this (assuming they meet the criteria). Otherwise we should perhaps just reject the experience of all patients, as currently every aspect of the illness is entirely subjective.

I don’t think that anyone has seriously suggested that we shouldn’t trust that the patients believe that X helped them.

The question is if that alone is sufficient evidence for the efficacy of a treatment. More often than not, it isn’t.

 

[Jonathan Edwards]

I think it depends on what you mean by "confirmed". There are many studies that have shown that stress is a precipitating factor, and that fear avoidance is correlated with improvement in CBT trials. I see that you yourself posted a comment saying that you had a very stressful life pre-illness, but you don't believe that it caused your illness (at least, that is my recollection of your comment, but feel free to correct me if I've got it wrong). Many patients themselves acknowledge that they were "overly afraid". This doesn't mean the illness is caused by fear avoidance, just that it's a factor for some patients.

None of this 'shows' anything as far as I am aware.
To 'show' something you need adequately controlled experiments, not just conveniently confirmatory observations.

Can you point to any properly controlled studies that show 'stress is a precipitating factor'? What is actually meant by 'stress'? In physiology stress is a body response, not a stimulus. Do we have evidence of this body response? And so on.

 

[Jonathan Edwards]

Except it is relevant for many patients (who say they recovered after addressing this fear), and we have studies that have looked into this.

But surely nothing but studies set up to confirm what is expected?
Having studies that have looked at something doesn't mean they provide any reliable information.

Can you give examples?

 

[dundrum]

But surely nothing but studies set up to confirm what is expected?
Having studies that have looked at something doesn't mean they provide any reliable information.

Can you give examples?

Well, I guess there are always ways to critique studies. But let's try a thought experiment. Let's say someone has been told by their doctor that their connective tissue is falling apart because they have hEDS, or that they took Myhill's debunked mito test, so they think their mitochondria are broken. Because of this they think they can't exercise, so they don't try. Then, they realise that maybe the test doesn't mean what they think, so they experiment with exercise, or getting out of bed, and they discover they are able to gradually recover.

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.

I'm sure you could design an experiment to test this in more detail. However, is that likely to happen in the current atmosphere? I doubt it.

 

[dundrum]

None of this 'shows' anything as far as I am aware.
To 'show' something you need adequately controlled experiments, not just conveniently confirmatory observations.

Can you point to any properly controlled studies that show 'stress is a precipitating factor'? What is actually meant by 'stress'? In physiology stress is a body response, not a stimulus. Do we have evidence of this body response? And so on.

There are a number of studies that show that life stress is a precipitating factor, e.g.:

https://journals.lww.com/bsam/abstr..._life_events,_infections,_and_symptoms.9.aspx
https://www.sciencedirect.com/science/article/abs/pii/S0022395696000507

and that ME/CFS is associated with dysfunction in the HPA axis:

https://pubmed.ncbi.nlm.nih.gov/24959566/

 

[Trish]

Well, I guess there are always ways to critique studies. But let's try a thought experiment. Let's say someone has been told by their doctor that their connective tissue is falling apart because they have hEDS, or that they took Myhill's debunked mito test, so they think their mitochondria are broken. Because of this they think they can't exercise, so they don't try. Then, they realise that maybe the test doesn't mean what they think, so they experiment with exercise, or getting out of bed, and they discover they are able to gradually recover.

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.

I'm sure you could design an experiment to test this in more detail. However, is that likely to happen in the current atmosphere? I doubt it.

I wonder how often that really happens. I would say without exception all the people I've come across with ME/CFS either in person or online, and who have described their experiences in some detail have suffered the opposite problem of not being wary enough of activity or being prevented by circumstances from avoiding activity, and who therefore find out pretty quickly that they still have limits on their capacity for activity that means they trigger PEM.

Yes, there may be a few so afraid of exertion that they stay in bed or rest a lot more than necessary for a while, but the problem is the assumption that seems to follow from this in the BPS world that fear of exertion is the cause of ongoing ME/CFS for everyone.

There is no evidence to support this assumption, and there are thousands of us who have pushed ourselves up to and over our limits without fear, and suffered frequent PEM as a consequence. For example, I continued working part time for years with repeated PEM. I was never afraid of activity, I wanted to continue working until retirement age, but I needed too much sick leave and was forced to take early retirement.

I just can't identify with the stuff about fear avoidance. I find it insulting that anyone would assume that it causes or perpetuates my ME/CFS.

 

[Yann04]

I just can't identify with the stuff about fear avoidance

Same. My coping mechanism was to push through. When I first got ME my first reflex was to exercise more — push my limits. Try to break my cycling and cross country skiing records. Needless to say, I crashed and crashed and now I’m stuck in bed. For the first couple months after the trigger I was putting in 15 hours intense exercise per week, and now I’m unable to sit up. So fear avoidance is like the opposite of my experience.

 

[Theresa]

Well, I guess there are always ways to critique studies. But let's try a thought experiment. Let's say someone has been told by their doctor that their connective tissue is falling apart because they have hEDS, or that they took Myhill's debunked mito test, so they think their mitochondria are broken. Because of this they think they can't exercise, so they don't try. Then, they realise that maybe the test doesn't mean what they think, so they experiment with exercise, or getting out of bed, and they discover they are able to gradually recover.

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.

I'm sure you could design an experiment to test this in more detail. However, is that likely to happen in the current atmosphere? I doubt it.

Exercise (within reason) is recommended for mitochondrial disease and hEDS and doctors advise it, it's people with ME exercise is really unsafe for.

 

[Utsikt]

There are a number of studies that show that life stress is a precipitating factor, e.g.:

https://journals.lww.com/bsam/abstr..._life_events,_infections,_and_symptoms.9.aspx

Precipitating factors means casual factors.
This study could not prove causation based on its design. Frankly, this is very, very basic stuff that you ought to get right.

According to the retrospective self-reports

https://www.sciencedirect.com/science/article/abs/pii/S0022395696000507

Again, not suited to prove causation:

We investigated precipitating factors in 134 CFS patients through the use of a questionnaire, interview, clinical examination and serology for infecting agents

https://pubmed.ncbi.nlm.nih.gov/24959566/
And again: no causality:

Despite the temporal relationship, it is not yet established whether the endocrine dysregulation is causal, consequent, or an epiphenomenon of the disorder.

I think this serves as a nice demonstration for why it’s often so easy to dismiss BPS-oriented studies.

 

[rvallee]

I think it depends on what you mean by "confirmed". There are many studies that have shown that stress is a precipitating factor, and that fear avoidance is correlated with improvement in CBT trials.

That would be scientifically confirmed. It's the theme of this forum, after all. Lots of people have labeled pacing as fear avoidance. Which is nonsense, and saying it doesn't make it true. Obviously we want to avoid worsening our functioning, this is perfectly rational. In fact many studies have found the opposite, but they get conveniently ignored.

I see that you yourself posted a comment saying that you had a very stressful life pre-illness, but you don't believe that it caused your illness (at least, that is my recollection of your comment, but feel free to correct me if I've got it wrong). Many patients themselves acknowledge that they were "overly afraid". This doesn't mean the illness is caused by fear avoidance, just that it's a factor for some patients.

I did not. I actually had an awesome life that was about as free of stress as is possible. I was very blessed. I don't even have any fears, and not a single event in my life that would rate above a 1 on a trauma scale. I basically rate none on almost all the usual factors that go into the mix to support the ideology, so this is all especially absurd to me, as even with chance it shouldn't be possible.

 

[rvallee]

I don’t think that anyone has seriously suggested that we shouldn’t trust that the patients believe that X helped them.

The question is if that alone is sufficient evidence for the efficacy of a treatment. More often than not, it isn’t.

Especially considering how the first year or so of Long Covid, the exact same thing happened with supplements. People were sharing the supplements stacks that helped them recover, or improve. Then over time people obviously noticed that it just doesn't work like that, that those remissions, recoveries and improvements were not related to any of this, especially that lots of people saw their health worsen not long after, despite still taking the supplements that 'healed' them.

This is all very common false attribution error. This is the same phenomenon that sees people wear things like 'balance bracelets' and other superstitious stuff.

So the community mostly stopped doing that. They let go of treatments that don't work, something the medical profession has proven itself incapable of, because they are not involved in any real stakes, for them life goes on regardless. Which is incredibly embarrassing.