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

Why should individuals not attend talks?

 

And if we do attend talks, do we need to check our handbag before we leave home in case there is a pintail comb in there which might be perceived as being a potential weapon - FFS.

 

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

 

Nothing is

 

Once again, a very helpful Twitter thread by @Adam pwme

[minus the quoted subtitle, see Adam's post here.]

Code:

https://twitter.com/ABrokenBattery/status/1430417304106459139

Code:

https://twitter.com/ABrokenBattery/status/1430423733810962434

 

The subtitle to the article quoted by @Adam pwme was clearly an error, maybe by a subeditor. Tom said he would get it changed, although not seen that so far.

 

Thanks. Will add an update when it's amended.

 

It's either:

1) Those nasty patients are harassing us by asking inconvenient questions; or

2) You haven't read the paper.

Today it's 2)

https://twitter.com/user/status/1430546739887493124

 

This from a man who can cure CFS with a single telephone conversation. Allegedly. And , yes, it was written by the man himself.

 

I wonder what Michael Sharpe thinks the commentators have missed in the PACE paper?
Maybe the truncated Y axis?
Maybe the inappropriate comparator arms?
Maybe the absence of any significant objective changes?
Hard to say.

 

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.

 

Have used these in a reply to Chivers!

 

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.

https://twitter.com/user/status/1430430439022501892


This post has been copied and following posts moved to a new thread:
Sense about Science (UK) and subjective outome measures

 

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"?

 

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

 

Reminds me of this Blackadder image