Yes, but the point is that some things can potentially help that shift, and that is what these brain retraining programmes aim to do. I'm not saying that they are able to cure everyone, or that they aren't a bit hit and miss in terms of evidence. It's probably worth looking at the actual evidence, and seeing if it applies to your own situation, rather than paying a lot of money for something that might not work.
Brain Retraining treatment for ME/CFS and Long COVID - discussion thread
- Thread starter RaviHVJ
- Start date
Yes, but the point is that some things can potentially help that shift, and that is what these brain retraining programmes aim to do. I'm not saying that they are able to cure everyone, or that they aren't a bit hit and miss in terms of evidence. It's probably worth looking at the actual evidence, and seeing if it applies to your own situation, rather than paying a lot of money for something that might not work.
No, it's not merely opinion, as we have many studies showing that stress is a preciptating factor, that rehabilitation and stress management helps, as well as patient experiences. You may not agree that the evidence is good enough, but that's what we have, and there are things patients can do that aren't harmful.
I don't know what you imagine most people with ME/CFS's lives are like. Many, if not most of us, have no option but to push our limits. We know perfectly well that we are not recovered because we repeatedly experience PEM.
Maybe the clinicians who diagnosed those people or made that hypothesis are mixing up ME/CFS and burnout/stress related problems and there's some misdiagnosis going on. I remember watching a video by Rona Moss-Morris where she described in some detail the experience of one of her patients. It seemed clear to me that the patient had a stress/burnout problem, not ME/CFS.
Please do not speculate or invite discussion about any identifiable individual's health either on a forum thread or in a private forum conversation. The forum rules apply to private conversations too.
I don’t think you understand PEM
I’d be more impressed if you were curious to learn about it and learn what M.E./cfs is
I’m not sure anyone who misunderstands it should be near pwme certainly treating them for /with things that have risk of harm where someone won’t ’get It’ so it’s a bit worrying to watch the grasping at but, but
and it not being a ‘but I thought x,y,,z’ with an open mind that you might have either/both been misinformed or/and just need to be updated on the science and the flaws of these assumptions and papers
but you aren’t coming across that way. And saying ‘but lots of patients’ without defining any source when so many had their health , lives wrecked and the psychological harmfulness of that inaccurate distracting label when the opposite was true is pretty worrying
- and no I’m not getting it wrong in summarising what you are doing, you are if you think you aren’t doing that with your casual non-precise assertions that keep mentioning an illness as if it causes that. But no evidence just more assertive language when you are asked for it
you do know about how to draw implications and conclusions in what you say that are proportional to the results and evidence quality you have don’t you? And how it’s an incumbent responsibility to not extrapolate inaccurately particularly to those to whom it will do harm ?
Yann04
Senior Member (Voting Rights)
All those studies are retrospective and with therapist and selection biases.
The only study I know of that actually followed a group of people before they got ME and checked with them after (Jason) actually found there was no link between mental health/stress and develloping ME.
So the only piece of quality evidence disagrees with you.
So yes, it is your opinion. Your opinion being the pet theory of a group of psychiatrists doesn’t make it any less of an opinion until there is good evidence.
And on that point, the only piece of good evidence finds the exact opposite.
Utsikt
Senior Member (Voting Rights)
I would argue that PEM is worse than deconditioning or avoiding activity.
Consider how patients with diabetes type 1 were treated before the discovery of insulin. Children were literally slowly starved to death because it would have killed them sooner to let them eat more.
Any sane person walking into their hospital ward would immediately think that it would be a good idea to feed the starving children. But hopefully, they would listen to the children, their parents and their doctors when they were told that it would harm them.
We don’t have insulin for PEM. So we have to suffer the consequences of avoiding PEM. Luckily, inactivity won’t kill you. It will just make your life very limited and certain aspects of your health will worsen. But it is better than the alternative.
Yes, I am familiar, and I'm not saying it is easy.
No, that doesn't seem to be the case from what I can see. There are many who definitely do fit the criteria and are severe.
Ok thank you. Yes, I agree with this. It does make it difficult if we're not able to give specific examples, but I agree that it will just be problematic.[/quote]
I think you should check that study. From what I remember it did actually find much higher levels of anxiety depression and stress in the ME group prior to infection (3x IIRC). They did a large number of comparisons, and it was non significant after correction. It would be interesting to see a study that looked specifically at these factors.
Moderation note:
The thread is now open again.
We have edited some posts to remove provocative statements and responses.
Speculation about a person's health status who is not here to participate in the discussion is not normally allowed.
It is a condition of membership that posting in private conversations is not made public without the permission of the person who wrote it. However, please remember that what you write in a private conversation might be made public by people not abiding by that requirement.
The thread is now open again.
We have edited some posts to remove provocative statements and responses.
Speculation about a person's health status who is not here to participate in the discussion is not normally allowed.
It is a condition of membership that posting in private conversations is not made public without the permission of the person who wrote it. However, please remember that what you write in a private conversation might be made public by people not abiding by that requirement.
Last edited:
Sasha
Senior Member (Voting Rights)
My bolding:
Do you mean that if all we have is poor studies, we should take their positive results at face value because that's all we have?
If so, what is it about them being all that we have that means that we should take their positive results at face value?
Do you mean that if all we have is poor studies, we should take their positive results at face value because that's all we have?
If so, what is it about them being all that we have that means that we should take their positive results at face value?
Utsikt
Senior Member (Voting Rights)
See this critique - the underlying study is on par with PACE (so completely useless).
https://www.s4me.info/threads/multi...f-the-fatigo-trial-2018-vink-vink-niese.5263/
This was a study with the Fukuda criteria. It used the perceived stress scale (PSS) (I believe it’s this). It also used the CES-D (I believe it’s this) and POMS (I believe it’s this). Edit: they took some spit samples and a blood draw as well.
I would highly recommend that you read the section on limitations (4.4.) - there are many!
This pretty much sums it up - it might have been the other way around. And it in no way proves that stress management reduces fatigue like you claimed, in fact the study design isn’t able to prove causation at all.
To be honest, it puzzles me that you actually went beyond the already over-eager claims of the authors in this study. You claimed causation while they spoke of association, albeit with a clear bias towards one casual direction.
That might not have been your intention, you might have forgotten to modify your claim by saying might? But precision matters, I can’t assume you meant one thing when you said something else.
Thread here:
https://www.s4me.info/threads/illne...yndrome-1998-deale-chalder-and-wessely.43619/
TL;DR: it’s fatally flawed.
It seems to me like the science doesn’t back your claims after all, @dundrum
Actually, it looks like I posted the write article. The one I posted wasn't even a treatment trial, it just assessed stress management skills. Here is the study I was thinking of:
https://www.sciencedirect.com/science/article/abs/pii/S0022399910004472
and another study found greater stress management skills are associated with lower PEM and greater CAR:
https://www.sciencedirect.com/science/article/abs/pii/S0306453014002509
Utsikt
Senior Member (Voting Rights)
Fukuda, open label, subjective outcomes, a control group that got a lot less attention, 44/113 not able to participate.
PSS, POMS and TND are all susceptible to reframing instead of capturing actual effects. I’m not familiar with QOLI. The CDC CFS symptom inventory only asks about a very rough estimate of the frequency and severity of symptoms the past month. That is not sufficient to capture PEM.
The changes in the intervention group for PSS are minuscule 29.22 to 27.11 on a scale to 40. Same for CDC CFS symptoms, from 2.07 to 2.01 on a scale of 1-5. They did report feeling a bit better in terms of QoL and POMS, but that’s expected if you give any patients some attention.
They used an F-test to claim that there were some differences between the groups, but the actually changes are pretty much non-existent.
Here are the limitations they mention themself:
To be blunt: Why have you not caught any of this yourself? Or does this imply that you have, but you’re okay with it?
I've had a look at that paper and will make a thread for it if I get time.
Edit:
Stress Management Skills, Cortisol Awakening Response and Post-Exertional Malaise in Chronic Fatigue Syndrome, 2014, Hall, Klimas et al
It has a paywall but from the abstract (edit: Utsikt found an open access link), it looks as though they are suggesting that a higher cortisol awakening response is associated with better self reported stress management skills and reduced pEM symptomology.
But, there is an obvious explanation. People who have no need to be energetic in the morning, getting the children fed and off to school, getting ready for work, rushing off to the bus or driving to work, don't need a pronounced cortisol awakening response. So, all of these things are consequences of ME/CFS severity.
If your ME/CFS severity is bad and you don't work, then you don't need to and won't be rushing about in the morning. You have probably been told that you aren't managing stress well, and you may have internalised that. And increased ME/CFS severity means a lower threshold for PEM, more severe symptoms.
I haven't read the study. It would be interesting to see the detail e.g. how were 'stress management skills' defined. I suspect that that definition would make this study even shakier.
It looks as though the authors (disappointingly including Klimas) have mixed up correlation with causation.
Last edited:
Utsikt
Senior Member (Voting Rights)
I’m slightly running out of patience with these studies, because they all suffer from the same problems. Vague and insufficient subjective measurements and in this case a vague biomarker. And it’s cross sectional so it can’t really tell us anything, certainly not about the causal directions.
Utsikt
Senior Member (Voting Rights)
PMC has you covered: https://pmc.ncbi.nlm.nih.gov/articles/PMC4165790/
jnmaciuch
Senior Member (Voting Rights)
The perceived stress scale used in the second study is full of questions that assume two people taking the test will have a similar functional capacity to accomplish tasks and will only meaningfully differ in perceived ability to tackle those tasks.
you’d be utterly unable to distinguish between someone who feels unable to handle all their tasks because they are emotionally overwhelmed or [edit:] because running errands is extraordinarily draining and painful.
So all this study tells us is that people who have a higher severity of PEM have less capacity to accomplish tasks, and this severity may also be weakly correlated with CAR.
perhaps you were not able to look at the measurement scale used in the study before you linked it. You can view it here.
Added: @Hutan I just saw your earlier post, I suspect you will find the scale used in the study as laughable as I did
Last edited:
It is what it is. It's a piece of evidence. Certain things are sufficient to junk a study (like lying about primary outcome). Other limitations and biases are good to keep in mind, and look at other studies.
Sasha
Senior Member (Voting Rights)
Why are other limitations and biases not enough to junk a study? For example, an open-label trial with subjective measures, where you can place no limit on the effect size of the bias, and it might be enough to make a harmful intervention look like a helpful one?
I have the impression that you think that bias can only amplify an effect, rather than create one out of nothing. This would not be a logical position.