Records released by @NICEComms show the Royal College of Physicians @RCPhysicians asked NICE to remove an expert witness testimony on the grounds they werent an expert in "guideline dev or pragmatic trials". The expert in immunology has a long-term interest in ME/CFS science!
Instead the @RCPhysicians asked NICE to accept the views of their experts and even called on the NICE director to overrule the guideline committee and dismiss other expert witnesses - because they were critical of CBT-GET trial methods!
The @RCPhysicians argued that guideline committee members and witnesses who had any affiliation with ME patient organisations were "activists" and should be dismissed. These included doctors and professors with years of expertise and knowledge on ME/CFS.
What is most extraordinary is that there are public records showing "experts" (1-2 persons) from the @RCPhysicians were in direct communication with NICE senior managers, showing they had privileged access to NICE to express their views on the guideline.
If we look at RCP expert stakeholder comments to NICE, they come across as rather incoherent or at least imprecise, to me at least, see this example: p697
There is too much to detail what RCP experts wanted: here some comments: dont use ME/CFS use CFS/ME; dont refer to a "severe" group of pts; remove the word "medical"; dont state ME/CFS pts get worse or less care than other pts. Dont refer to a specialist ME team only gen rehab!
Lastly, may seem like a small point, but a leading @RCPhysicians expert who helped RCP draft their stakeholder responses to NICE was also doing the same for @BSRehabMed making appear as if this was two professionals groups - when in fact same experts working for both org's.
...you could call the last tweet "two bites of the cherry" being able to make stakeholder comments twice! one in one medical college and another in a society of rehab medicine - this was an attempt to show NICE there was wider medical agreement, when in fact, same experts.
The @RCPhysicians organised a co-ordinated response by sharing its response to @NICEComms with other dr organisations and getting them to reference the RCP position - as such RCP did not provide an unbiased standalone position given it was organised with a wide group.
RCP shows how out of touch with ME patients they are when they state they want CFS kept over ME/CFS, and that CFS as a term holds no assumptions v ME infers a disease! They forget, nerve and muscle in ME! - if they listened to patients they'd know what patients think of term CFS!
More: @RCPhysicians experts claimed to NICE orthostatic intolerance, something many ME patients report, is "overrated" in ME/CFS citing 1 study with statement "no association between OI and ME" - wholly wrong in fact! healthrising.org/blog/2020/08/3…
p746 @RCPhysicians experts also claimed 'Post exertional malaise' in ME/CFS (a cardinal feature) is too difficult to define and is too subjective and occurs in health people. I guess they forgot "fatigue" and "pain" are subjective" & PEM is defined and unusual in healthy people.
...in science training a PhD student is taught to present evidence fairly, that includes if one study says orthostatic intolerance low in ME/CFS and others say OI common in ME/CFS < at least ref both. RCP experts cherry pick references not giving full picture. Thats bad practice!
....it took me minutes to find various studies on orthostatic intolerance in ME/CFS< most showing some signs of it related to the condition. We must then wonder why @RCPhysicians experts decided to advise @NICEComms OI doesnt exist in ME/CFS and is over-rated? "experts would know
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