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

[Trish]

The other reason are all the personal attacks, usually in the aforementioned threads.

Well, I think that's a problem. What I see is a lot of misinformation about biopsychosocial being continually spread here. Then, those misunderstandings lead to personal attacks and unfairly panning studies before even looking at them.

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

 

[Hutan]

Again: these constant attacks are why researchers aren't interested in joining s4me. That isn't going to change until the atmosphere changes. I won't be sticking around unless I'm able to change the moderation here, although that seems unlikely based on this thread.

I don't understand why this is important enough to repeat. It's fine for people not to want to join the forum if they don't like the way we approach things.

I avoid joining social media groups where opinion is confused with evidence. Which is also fine.

Discussion of whether researchers do or don't come to this forum and why is off-topic for this thread; further posting on this will be deleted. Comments on how science is discussed on the forum can be made on
How do we discuss science and medicine on S4ME forums?

It would be useful to read that thread before posting on it to avoid repetition.

 

[Adrian]

Because they are not only incompetent but they constantly try to sell their treatments to the media and the health care professions despite having no reliable evidence of efficacy.

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

 

[Trish]

There are many experiments that look at fear avoidance in ME/CFS,

I assume you a referring to studies using questionnaires such as the one that purports to diagnose catastrophising.
I recommend you read this excellent article by @ME/CFS Skeptic.
Catastrophizing, time to ditch the term?
Article | Thread

 

[rvallee]

I don't think anyone was claiming that something ridiculous was possible. You seem to be using a strawman here.

It's the exact same reasoning. I don't agree with either reasoning, for the same reason.

 

[rvallee]

Also, many posters reject the idea that fear can affect symptoms, that stress affects symptoms

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.

 

[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/