Discussion in 'PsychoSocial ME/CFS Research' started by Dolphin, Nov 26, 2019.
They've 'discovered' that the sicker people are the more they worry about it. Genius.
This study sought ... evaluate the effectiveness of Cognitive Behavioural Therapy for HA in CFS/ME.
... Large effect sizes and clinically significant changes were generated in the treatment study.
...This study identifies HA as an important target for treatment, trial findings should be further replicated on a larger scale.
Gosh that was quick. Not even any methods or data.
Here we go again
Not just sicker but ignored and misunderstood by family and medical professionals, facing a debilitated future in which activity makes things worse, and there is no certainty. Anxiety should be more common than it is.
Maybe there is a subgroup of CFS patients suffering from "health anxiety/hypochondriasis", but this seemed a frustratingly pointless read.
Even if the questionnaires were all accurately measuring what they were intended measure, problems with the design would still make it pointless. As it is, there's no real reason to believe that the questionnaires are accurately measuring what is intended.
This bit stood out re CFQ:
Ignoring what they mean by 'supported' (as the cited paper doesn't show much), I wonder why they they said the 0-3 scoring was more sensitive to change?
I wonder if there are any reasons CFS patients might tend to have disbelief in medical reassurance? Perhaps it's not a great sign of "health anxiety/hypochondriasis"?
This paper completely ignores the disturbing social and historical context surrounding CFS, and the way this could affect how patients respond to these questionnaires.
Details on this questionnaire here: https://www.kcl.ac.uk/ioppn/depts/p.../cadat/research/health-anxiety-questionnaires.
I went through thinking about what sort of statements someone suffering from serious problems with CFS could agree with. I think these statements need not show any real problem with health anxiety/hypochondriasis (though a lot depends on how you define things like 'often' or 'much of the time' - is four times a week often or much of the time?):
That would lead to a score of 28. Even if you remove the questions where I assumed suffering from serious CFS would mean that they worried about suffering from/developing a serious illness, and instead that they did not worry about that at all, that would still leave them with 22 points.
I'm not sure that 'definite' is the right word there.
There's so much stuff like this in here:
So an association between how individuals with CFS fill in fatigue and physical functioning questionnaires suggests that "reduced physical activity may perpetuate and exacerbate fatigue during activity"? What conditions where people suffer from disabling levels of fatigue do not show such an association?
Am I missing something here? I now have such low expectations for Daniel's work that I worry I might be slipping into assuming too little of her.
Edit: I should mention that the assessment of their health anxiety intervention was based on questionnaire scores from 10 people, with no control group. If that's research that interests you, feel free to check out the details in their paper.
Yeah, you'd have to be pretty odd to want to be a part of Daniel's work.
That she was appointed to the NICE committee shows the quality of thought they think we deserve.
I tend to think common sense should preclude postulating anxiety as explanatory in CFS
-People with anxiety disorders can have extreme anxiety about pretty much anything and yet do not experience anything particularly like CFS
-Anti-depressant/anxiolytic drugs are not effective in CFS
So there's no good reason to think this would a productive investigation.
PACE makes much more sense as at least it postulates a specific sort of delusion that, if it existed, could explain the syndrome. (Although some of the questions listed above are leading in the way of trying to suggest this sort of delusion, so they've hedged their bet substantially.)
I have no doubt that anxiety is commonly high in CFS sufferers, and if it helps to treat it, then by all means. Nobody is against that.
haven't read the paper but from what other people have gleaned I take it they did not try to tie any of this in with frequency of visits to a GP as they usually do for MUS?
The recent surveys showed that most pwME 'avoid' medical appointments. They would do better by trying to understand why that is.
ie some HA may be largely due to knowing that any potentially serious health issue related or unrelated to having ME/CFS will be met with scepticism, and the only treatment on offer will be CBT.
Sigh... It's always the same. As long as they haven't proven any causal link between these thoughts and the symptoms, this will be pointless.
How does this past the test of peer review? This is more telling aout the current state of "scientific" psychology than anything.
How strange that some people who have lost, or may be still to lose, their health, their career, their relationships, their pursuits might feel a little anxious. No doubt a little chat with a psychologist would enable them to meet the future with a Zen-like tranquillity.
Circular Reasoning 101.
Yes, I'd score 21-22ish. The choice of this questionnaire is appalling.
This questionnaire does not have discriminant validity in participants who actually have serious illnesses.
Interestingly, for a study of MS patients the questionnaire was modified:
Similar changes would lead to my scores dropping to 12-13ish.
Yet here they cite that paper as part of their justification for a cut-off of 18 using an unmodified questionnaire?
30 years of doing the exact same study over and over again. Nobody seems concerned by that. This is not science.
It's literally the current clinical paradigm so it's very telling that people who actually believe in the conclusion are not even aware of that fact and still cannot report anything more than "may be". The last 30 years have been nothing but "may be"s. They are still exactly at the same step Wessely et al began, arguing the same thing as if it were new even though it has literally been in practice for 2 decades. This is insanity. How can there be zero accountability in medicine?
As is tradition, literally arguing for a consequence, one that has no precision or reliability, to be the cause and arguing there should be trials of this when in fact there have been dozens of trials of this, all negative but pretending otherwise, for the last 3 decades and it is literally in clinical practice right now, to disastrous outcomes. "Likely to" is a personal opinion not only devoid of evidence but disproven again and again.
And this fool is on the NICE committee as an "expert"? Either completely unaware of the most basic facts or oblivious to them? This paper could have been written 30 years ago and in fact pretty much has been written dozens of times since, give or take a few words or platitudes. Always the same thing, always the same arguments, always the same conclusions.
Complete ineptitude. This thing is more religion than anything else. The same things over and over again, like a ritual, never moving in any direction. Even after having gone through decades of trials and standard practice of those ideas, people literally connected to the researchers who did those trials are still arguing as if this had never been tried even though it LITERALLY IS CURRENT PRACTICE.
Can we bring a formal complaint to the NICE committee? Someone on the committee is clearly arguing that what has been current practice for years should be tried and it's a novel idea. The committee she is sitting on as an "expert" is currently literally litigating the outcomes of having tried that in practice since the 2007 committee. This here is literally what the current NICE guidelines recommend and an "expert" on the committee is arguing "hey, we should try that, it's never been tried".
As expertise goes this is like a civil engineer on a review committee assessing a failed dam somehow arguing that maybe putting a dam would solve the problem. This is complete insanity. We can't make any progress with incompetent idiots like this involved in the process.
Just for some context this is what the NHS defines health anxiety to be:
From the conclusion section in the paper:
This study identifies HA as an important target for treatment, trial findings should be further replicated on a larger scale.
Does it really? Do patients agree? What the study shows is that the authors don't believe that their subjects are really ill and that they must apply a treatment regardless of patients needs or wants.
If we're on the subject of delusion, how is it that these researchers have an unyielding belief in such a large number of people all suffering from pretend illness.
I'd have to say their focus is really really narrow. If this were the case should they not also be considering important issues around how to sort out all those people who have been diagnosed as hysterical but then go on to get a diagnosis of cancer for example (we know of such).
Should there not be a conversation also about social factors?* Any context at all outside of the individual?
This of course would be futile but discussing this would at least show some commitment to solving what they consider to be the problem. But it all starts with the premise that CBT is the solution so let us create the problem.
It is so sad to see these papers crop up like weeds and know that the pretending is all on the part of the researcher. There is no science here.
*There is one paper that I vaguely remember which suggested that people who are ill are ill because they are jealous of people who have more stuff (or something like) so a social context that brings it all back to the individual. That was special.
That's what I thought. Didn't Wessely and Powell cover this ground in 1989, and they don't even get cited.
I doubt if I am unusual but I actually have very low health anxiety compared to people I know. I am continually surprised when people rush to the doctor for a symptom I have had for years and just put up with. Any new symptom I get I assume is ME in the first place and then I do not want to go to the doctor's anyway. (Anxiety about seeing doctors I do not know, that I do have.) Family have forced me to see about new symptoms.
We also have an informed view of media headlines. I do not worry that my eating habits will give me cancer or the latest scare about whatever without very compelling evidence. Nor do I watch TV and decide I have whatever disease they are talking about.
I understand the limitations of health testing because of my experience with ME and the reading required to be our own doctors so when I was recalled after breast screening I knew it was most likely to be an artifact. It crosses your mind it could be serious but I have known people incapacitated by the worry.
On the other hand I continually pay attention to my ME. Does that pain mean I have done too much, should I lie down, could I risk watching TV or will that leave me bed bound tomorrow? Sensible for us.
Looking at the growing problems of declining life expectancy in the US and how social factors play in, a real problem that does not seem of the slightest interest to BPS folks, who instead are obsessively focused on neo-Freudian garbage, is seriously depressing.
There is a real need for a genuine BPS approach, one that takes in social factors and especially distress, the real kind that comes from impossible situations, not the stupid perfectionist fake distress crap they obsess over. Instead you have this nonsense here. I don't get it. There are so many people who could benefit from understanding how so many health problems are caused by external factors, especially things like pollution, deprivation following poverty, etc.
Instead we have Freud's pipe dreams running in circles, producing nothing but smoke and hot air. What a colossally stupid waste of everything. It feels like police forces obsessed with people eating on the train or doing patrols for skirt lengths at the exclusion of real crimes, as if all real crimes had been solved. The whole thing should be studied as an exercise in mass foolishness.
As it is, BPS is basically an obsessive focus over the narrowest, least important aspects of illness at the exclusion of all the things that actually matter. Their areas of focus are generally so useless they wouldn't even be spontaneously named on a list of patient priorities. It's completely bonkers, serves no purpose.
Separate names with a comma.