Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

But everyone knows that you are biased @adambeyoncelowe - you were on that dreadful committee.

 

Such a shame that they are all archived away for posterity anyway ...

ETA: Gentle sarcasm towards the PACE authors intended here .

 

Sorry, I was being mildly sarcastic. Such a shame for the PACE authors that the PACE documents are immortalised for all to read, when needing to swat up on how science must not be done.

 

Trial By Error: New Paper From PACE Authors Repeats Bogus Arguments and Defenses

"So. There are lots of issues here! Where to start? Well, there’s this: While ignoring the recent NICE debate, the authors reference the now-dethroned NICE guideline from 2007, as if it remains relevant and actionable. In other words, the article was outdated the moment it was published. This ensures that, to anyone following this long-running saga, the three professors come across as hopelessly out-of-touch and self-deluded. They’re reliving past glories, like Sunset Boulevard‘s Norma Desmond (“I am big, it’s the picture that got small”)."

https://www.virology.ws/2021/11/20/...authors-repeats-bogus-arguments-and-defenses/

 

I'm not sure this ancient movie reference means anything to anyone except aging gay men like me!

 

Oh right--I forgot about the musical. Never saw it. The movie is one of weirdest, greatest movies ever.

 

Psychogenic ME/CFS: Turning the Nostalgia Up to Eleven

"So where were we? Well, apropos of absolutely nothing, last week saw the formal publication of that new paper purporting to summarise research on “evidence-based care” for ME/CFS. As you might recall, its authors seem to be oblivious to the findings of the recent NICE review of this very same topic. (These authors’ academic paper runs to three pages; the corresponding review by NICE required a 400-page document to explain.)

The trio who authored the new three-pager are long-serving proponents of the now discarded psychogenic theory of ME/CFS, the one that says that patients produce their own illness by thinking about health in self-damaging ways. Consistent with this idea, the new paper suggests that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) can be used to successfully treat ME/CFS — in direct contrast with the NICE review, which concluded precisely the opposite."

https://thesciencebit.net/2021/11/24/psychogenic-me-cfs-turning-the-nostalgia-up-to-eleven/

 

interesting reference to spinal tap......

Trudie Chalder in one of her presentations talking about the development of the CFQ

"So to get us started; with Simon and I think its more Simons research than mine that we developed a fatigue scale, which is now called The Chalder fatigue scale, but I didn’t call it that, it was just a fatigue questionnaire. It was based on the GHQ, the General Health Questionnaire. And I think the reason it has been used so much is because its very short, it’s easy to administer, it includes items related to physical and mental fatigue, and its got eleven items and my partner always said ‘why eleven?’ he’s a tax accountant and he can’t understand why you would not have ten, and I need to remind him of spinal tap and if anybody has seen it, you know the [laughs] . So that’s the fatigue questionnaire and there are the fatigue questions."

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

 

This is a classic "OK Boomer" moment!

 

I guess patients should take strength in the fact that they are not alone in getting blamed when their treatments don't work

It addresses the 'harms, what harms?' issue by suggesting (which I'm pretty sure I've seen them do before recently) they had 'safety measures' (did they?) and 'it must have been harm done by those doing our therapies incorrectly'. Hanging out to dry those who they had doing their therapies for them for years?

I guess that is why this is aimed at internal medicine readers and not in the journal of physiotherapy..

As someone else on here noted, they then seem to have taken down their pretty prescriptive instruction manual (that does precisely what they say shouldn't happen) for PACE at some point after it was linked to by this paper that Chalder was involved in was published this July: https://www.tandfonline.com/doi/full/10.1080/09638288.2021.1949049


Someone should surely just create a meme/comms campaign - taking what they've said in this (and their other rewriting history new ones) article and just putting their own materials next to each of their points.

 

The journal published a comment by Michiel Tack and a pseudo-response by Chalder et al.

Tack's comment: https://link.springer.com/article/10.1007/s11606-022-07704-0

Pseudo-response by Chalder et al: https://link.springer.com/article/10.1007/s11606-022-07712-0

Oddly, the authors' response is to Tack and Saunders, but they are not referenced. Also, I can only find Tack's comment on the journal's website, but not Saunders'.

(Edited -- author's name.)

 

Merged thread

Bias in Exercise Trials for ME/CFS: the Importance of Objective Outcomes and Long-term Follow-up 2022, Michiel Tack

Sharpe and colleagues recommend that patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) be offered cognitive behavior therapy (CBT) and graded exercise therapy (GET)1, advice that contrasts with recent NICE guidance on ME/CFS.2 The authors argue that “there are many randomized trials indicating the safety and efficacy of these treatments.”1

All of these trials, however, were nonblinded and relied on subjective symptom questionnaires as their main outcomes, a combination that creates a high risk of response bias.
[...]
more at link.

https://link.springer.com/article/10.1007/s11606-022-07704-0#article-info

 

Evidence-Based Care for People with Chronic Fatigue Syndrome and Myalgic Encephalomyelitis
We respond to Saunders and Tack’s comments on our recent review

full article
https://link.springer.com/article/10.1007/s11606-022-07712-0

 

I see that she relies on "gold standard" trials. Was not the gold standard declared obsolete in 1971, having had a protracted demise from the 1920's?

This appears to be an appropriate metaphor.

 

"One patient booklet, for example, informed patients: “You will experience a snowballing effect as increasing fitness leads to increasing confidence in your ability. You will have conquered CFS by your own effort and you will be back in control of your body again.”"

And I think the other point that needs to start being brought up is how 'unsafe to be honest' patients might have felt in various situations. It is common that you read about the 'nod and leave' to keep yourself safe patients have had to do.

People have been in situations where it was almost explicit that they should do and say what they needed to individually get themselves out of there without a vindictive black mark in some way. Whether on their record, phone calls, or worse 'treatment' or insinuations about their mental health happenning in response.

The power assigned to anyone in these professions is huge. Someone telling you what the right answer should be all the way through and the situation basically being intimidating leaves most no option other than to provide the answer requested by those investigators in order to reduce one's risks.

This needs to be another issue addressed when discussing research in the area - whether trial or live or past data.

I know, I've been trapped in a room being forced through things that left me calling someone at 2pm the next day as I was unable to move. I managed teams at that point, dealt with dificcult people and situations at all levels on a daily basis. The woman who when my normal physio (neck/back) was on holiday and I mentioned ME so she'd be careful was such a bully and so rude with it I could not stop her. I reported the harms when normal physio returned, you can tell noone would do anything. This is NOT to back up Sharpe's excuse - she was instigating exactly what they asked for, with an attitude she had been programmed with - it is to note that the intimidation is a level normal people would not get through or expect. And with letters sent behind your back affecting other treatment if you complain. And needs to end and be noted and utterly safeguarded against (made impossible) if they are to claim subjective studies aren't influenced by this.

 

"Gold standard" is double-blinded randomized placebo-controlled with objective outcomes, which none of their trials even come close to be, and they know it. The journal editor knows it and lets it pass anyway because this is all politics.

 

They repeat the canard of representing "Three clinicians resigned from the NICE guideline committee before publication" as though the three were disassociated from the final publication, which they certainly were not. The duplicity of this is clearly conscious because they avoid making their intended point oblique by acknowledging that Charles Shepard (also a clinician as it happens) also resigned from the Committee before final publication.

Not sure if it's worth the effort for @Michelle (or someone else ?) to follow up on that point - it is a gross misrepresentation though.