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

It seems they're deliberately mischaracterising the critical arguments as usual.

This is nonsense. We're not talking about "biomarkers", we're talking about objective measures of functioning. If there are no objective measures of functioning then those PROMs all lack construct validity.

 

This is a essentially a response to the NICE guideline, and the associated debate over key issues, that somehow manages not to mention the NICE guideline once!

 

Is selective blindness a functional disorder?

 

They're trying to stake a claim to rehabilitation, and set the patients as being anti-rehab (because the BPS lot think that patients think anyone who gets better was never ill with ME/CFS, which is generally not the case): GET and CBT are rehabilitative, whereas pacing is not.

 

These dates may be relevant

• Received 07 August 2020
  
  
• Accepted 01 October 2021
  
  
• Published 17 November 2021
  

 

Thanks @Sly Saint !

It's the trick they've used from the earliest times, talking about unknown aetiology and/or lack of single biomarker like it means "no physical abnormalities that indicate illness can be found".

(Another trick is that you can't find treatable disease, the added adjective can make it technically true, but it is brought like there isn't anything to be found. At some point Wessely and Sharpe even argued that attributing the aetiology of ME/CFS to a virus was useless, a disadvantage even, because "It is common knowledge that viruses cannot be treated (Helman, 1978) and thus, this view of aetiology, implicit in the label of 'post-viral fatigue', carries no information about how the sufferer can recover." Yes, when you're done blinking you may want to read that sentence again.)

 

Yeah, this was more a 'response' to the draft guideline than the final—probably prepared over summer.

 

They know that people can read right?
In 1992 Sharpe was very clear that patients had "muscle wasting, changes in cardiovascular response to exertion, depressed mood, postural hypotension and impaired thermoregulation." , which he calls an effect of inactivity, continuing that "These effects can be reversed with gradual increases in activity, although this will commonly result in a transient, and physiologically understandable, exacerbation of symptoms, particularly muscle pain."

So those vague "associated physiological changes" that are tacked on at the back there like they are an afterthough, instead of the main course that they have been throughout, include changes in cardiovascular response to exertion and postural hypotension.

Also, no elaboration on the "thorough assessment" like I had expected from the abstract. Are we supposed to forget that they spent 30 years discouraging physical examination and urging GP's to gatekeep access to it?




I think it's time to settle on the sofa with a mug of tea and a marker.

 

That was exactly my reaction. Objective measures, use of Oxford, flawed disease theory, etc.

 

Well, hello:

After arguing (as far as I can tell with my mush brain atm very lamely, with use of....the PACE trial ) that trial results that use the Oxford criteria and others that do not require PEM are still applicable to ME/CFS, it says

with a reference that according to the list was last accessed March 24, 2021.

Which is after Appendix G was sent along with the draft, 5 days before the NICE guideline was delayed, and 5 weeks before the final guideline was originally due to be published.

edited to add, if it wasn't directly clear, that I think this sentence, or quite possibly this whole section, was added with the expected near-publication of Appendix G in mind.


@InitialConditions

 

And where did that definition originate from?

Standardised and validated? Validated with the same level of scientific rigour as the trials that rely on them I suspect. Zilch in other words.

When considering bias relating to patient reported outcomes, it is absolutely not valid to imply validity of such outcomes simply because diagnosis is made based on patient reporting of their symptoms; it is completely spurious.

We are talking about the bias associated with self reporting of symptoms, not simply the self reporting of symptoms per se. Any bias involved will be heavily influenced by the patient's prevailing situation, and environment, at the time. In the case of patient reported trial outcomes for ME/CFS, the potential for bias is much higher, given all the previously well discussed influences on trial participants, not least of which is trialling interventions where biasing of self reported outcomes is intrinsic to those interventions!

Patients seeking initial diagnosis will not be exposed to such biasing interventions.

So bias relating to self reporting of symptoms, is not simply a function of the self reporting process itself! The issue is that self reporting is highly vulnerable to biasing influences, be they deliberate or unintended. Suggesting the issue of bias is void simply by stating two different uses of self reporting is bogus; it is the vulnerability to bias in the different scenarios that is key, and glibly overlooked (or maybe genuinely not perceived from their blinkered perspective).

It seems a straw man argument.

 

They've shot themselves in the foot by publishing this paper though, because despite all the linguistic contortions used they actually point to the PACE trial manuals as explaining how to do GET and CBT safely! But the roundtable event led to the clarification that this is the type of GET that the new guidelines are prohibiting.

 

Oh. I actually missed the 2020 in the first date! A paper does not usually sit with a journal for a year, but the fact that they give the original submission date means that it probably wasn't totally pulled as the authors tried to keep up with developments at NICE. I suspect it may have been an invited paper—these 'Perspective' papers often are.

It was almost certainly timed to coincide with the guideline release, and they've shifted publication accordingly.

 

The expected guideline publication date at the time of submission was 21 April 2021 (announced June 2020). Yes, it can take months and months—and occasionally years—to publish (I've been there myself), but, for a 3-page perspective paper, submitting 8 months prior to the expected guideline publication date is extremely early.

 

'Vinegar in dirty bottles'

 

In more ways than one I think. They have clearly stated their position, which is totally opposed to the new guideline, and the evidence assessments it is based on. Their arrogance seems to know no limits, and I think it will come back to bite them one of these days.

 

I also wonder if this paper will become an indirect way to get BACME members on board with the new NICE guidelines, as the authors are basically claiming that most of the ME/CFS clinics must have been doing GET and CBT wrong and that is the reason patients have reported harm - thereby portraying professional colleagues as incompetent. I think the authors are successfully marginalising themselves from the majority of therapists working in the clinics, who may actually be relieved that the new NICE guidelines allow them to work in a way that patients' views align with.