What we're not being told about ME - UnHerd (Tom Chivers)

When I last wrote about ME/CFS, in 2017, one researcher told me that “The last time I said anything public about CFS, I got followed around by an angry mob for about a year, on Twitter and email. Some even turned up to talks I gave, and I’ve heard of them turning up to people’s houses or doxxing them.” The author of a study in that piece said she had received death threats.
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Why should individuals not attend talks?
 
The rejection of GET and CBT in the NICE guideline was based on a number of different reasons beyond just the unblinded with subjective outcomes issue: https://www.nice.org.uk/guidance/gid-ng10091/documents/evidence-review-7. I have a bit of concern that just mentioning that problem makes it easier for people who disagree with that point to dismiss the entire NICE guideline, when there's actually a lot more to the downgrading of evidence and NICE's reasoning than just that
 
Pretty good article overall. :thumbup:

The basic idea is, first: someone gets ill with some virus. A cold, the flu, whatever. While they have that virus, they become deconditioned. So when they next try to do their normal level of exercise, it hurts, and they feel exhausted. The patients attribute that to the disease, and stop doing exercise. So they become even more deconditioned, and so the next time they try exercise, it becomes even more painful and exhausting. It becomes a positive feedback loop – the pain prevents the exercise, and the lack of exercise increases the pain.
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Does this model specifically require a viral trigger?

Another researcher, who I know personally to be pretty fearless, told me when I tried to speak to them for this piece: “I’m afraid I don’t go within a million miles of ME/CFS these days. Just too much grief.” ME/CFS patients have a reputation for being angry.
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Anger is what you get when sick, vulnerable, innocent people are persistently mistreated this way, then blamed when that approach inevitably goes wrong, and finally told they should be grateful to their tormentors for it all.

Don't like the anger? Don't give us good reasons to be angry. It's not rocket surgery.
 
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Similarly Michael Sharpe would do well to read the peer reviewed critiques of the PACE study, as he consistently fails to respond to the substantive issues they raise, rather than his preferred straw men that are completely of his own inventing.
 
Uh. Interesting. Although the 2nd tweet really misses... all the points, and argues impertinent ones instead. As is BPS tradition. I really don't think that there is a basis to claim that a shift to subjective measures was ever especially welcome other than by the BPS ideologues. Frankly an odd point to make, if anything we are constantly begging for more rigorous science, and the same with chronic pain, where a biomarker or some other objective way to assess pain would be a true paradigm shift that would change everything.

For anyone not familiar with, Science about science has been very vocal in defending the BPS model, the PACE trial and generally the bad pseudoscience of the BPS model. At least the UK chapter, which this is, I checked.



This post has been copied and following posts moved to a new thread:
Sense about Science (UK) and subjective outome measures
 
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Invisible Woman said:
Great article but not terribly happy about the harassment bit either.

If we're going to talk about harassment then talk about it in a balanced way. I daresay there have been ill judged letters or comments over the years but -

1. the newspaper smear campaigns over the decades, often with quotes from "experts" have caused many ME patients into being bullied and harassed by those around them into spending money they don't have on treatments that don't work. Then when left worse off in every way, they have been dismissed and disgarded as worthless individuals who simply don't want to get better.

2. researchers who know full well that their hypothesis is unproven have stood by and allowed their hypothesis to be used by both insurers and benefits agencies alike to deny desperately needed support to vulnerable people. Where support is given it's usually at such physical cost to the claimant that it often causes a deterioration in their condition.

3. having reported abuse to a tribunal (PACE FOI tribunal) and then been questioned further, a researcher admitted that what she called abuse was one incident of minor heckling. If that's the case maybe everyone in my old school debate team should be claiming harassment and abuse.

4. Esther Crawley when alleging she was the victim of abuse waved a cut and paste threatening letter in front of her audience. She even quoted from it while neglecting to mention it was a mock up & not an actual letter sent by anyone.

Personally, I would rather a few angry letters or emails, even the odd threat than being outcast and denied the support I need. If you want to know what feeling threatened and intimidated feels like many ME patients can tell you - it's having the Benefits Agency review forms hit your doormat, knowing your GP thinks you could get better if you tried & won't support your claim, your family won't help you either because you wouldn't/couldn't afford to go on that LP.course they were goung in about and if your money is cut back any further a choice between heating and eating will seem like a luxury.

I'm sorry (to my fellow ME sufferers) if this appears to be an angry rant. I'm not angry - it's almost impossible to maintain fury over a period of decades anyway. I'm not angry, just saying.
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Excellent points @Invisible Woman

And for the love of .... surely we have the right to be angry. What about other groups who have been stigmatized for years? Lately their right to be angry, and protest has been recognized, and applauded. At least by non-knuckle-dragging citizens who are logical, ethical, and caring.

And, what's with this "pressure from patients" mantra. Repeating this shows the true colours of the Other Side. Their belief that patients are lesser beings, who "should know their place" and their place certainly isn't in knowing what is best for them.

On the other hand pressure from medical professionals is apparently totally warranted. "Completely acceptable."

About physical vs.psychological, I would bet many pwME have some tests showing abnormalities. For example the 2 day CPET. And another being a drop in BP, or a significant increase in HR with upright positions. Some may have other abnormal results with NK Cells, MRIs, cytokines, balance, and tilt table tests etc.

But these are "all caused by our unhelpful beliefs right"?
;):wtf::(:banghead:
 
Peter Trewhitt said:
Similarly Michael Sharpe would do well to read the peer reviewed critiques of the PACE study, as he consistently fails to respond to the substantive issues they raise, rather than his preferred straw men that are completely of his own inventing.
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one question for Michael Sharpe;
does he still believe in the fear/avoidance, deconditioning theory of CFS that the therapies were initially 'designed' to address?
(Trudie Chalder clearly still does)

eta:
"But that once the fatigue had been triggered, there were a number of factors which perpetuated it, but principally a fear of making symptoms worse and this all or nothing approach to activity which often leads to fear avoidance.

So the CBT was based on the actual model and included a structuring of the daily activities people had been struggling with a gradual return to normal activities over weeks and sometimes months.

And the idea was to stabilise their activities, have it more consistent, and then build up gradually so that their confidence was built. And then we addressed unhelpful beliefs related to their fears about making symptoms worse. I have to say at this point that we weren’t trying to change peoples attributions from physical ones to psychological ones."

"So what changed in our study. Well the thing that changed and seemed to be associated with a better outcome was the belief that exercise should be avoided and that doing less helped fatigue. That was the thing that changed. What didn’t change was their belief in the fact they had something physically wrong with them."

"So at the end of that sort of era, if you like, we found that there was some evidence for a cognitive behavioural model of fatigue syndromes, and it was CBT or a modified form of CBT was the effective treatment for adults and children with fatigue syndromes in a variety of settings.

The NICE guidelines took it on board and they recommend and they still recommend at the moment that CBT and Graded exercise therapy should be offered to people with mild to moderate CFS."

"So in terms of the mechanisms of change then going back to the PACE trial, we were wanting to know well what was it that needed to change in order to bring about a change in the outcome.

And if you think back to our model which was the fear avoidance model we were specifically interested in whether those beliefs were bringing about a change in the outcome."

https://www.s4me.info/threads/trudi...s-interviews-and-news.5576/page-3#post-152193
 
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