Those previous studies (i.e Deale et al., 2001; Knoop et al., 2007) actually used the stringent criteria consistent with the original recovery in the #PACEtrial which the investigators and their supporters were denouncing as extremely harsh, unrealistic, inconsistent with clinical experience.

Because the changes to the normal range in the #PACEtrial insulted the intelligence and exposed people with #MECFS to unrealistic and harmful expectations about recovery. They tried to claim that it was consistent with previous research (which they co-authored) which was also nonsense.

The #PACEtrial recovery song by the late Graham McPhee uploaded to Youtube around 2014, which along with his more serious videos on the same channel, was used to argue that he was part of an organised campaign of harassment when he submitted a FOIA request for the fitness data from the PACE trial.

(3/3) This spin poisoned the well against critics of the #PACEtrial, so I had to address it in detail with the information tribunal that sided with my FOIA request. It was well received and they agreed the assessment of #MECFS activism in relation to the #PACEtrial was "grossly exaggerated" (p40).

(2/3) The Science Media Centre (UK) ran an organised campaign for "seizing the agenda", "frame the narrative", and "engineered the coverage" (p12). This resulted in numerous hyperbolic articles about alleged harrassment of #MECFS researchers which conflated it with valid criticism of the #PACEtrial.

Another nugget (from the web appendix):

"22 of the 27 liaison psychiatrists were from one centre.
4 psychiatrists had completed training; the rest were
trainees."

So specialist *medical* care was delivered mostly by trainee psychiatrists. 🙄

#PACEtrial

bsky.app/profile/luci...

(3/3) We can gain an impression from multiple large-scale patient surveys that adverse responses to CBT and GET are common for those with #MECFS outside clinical research such as the #PACEtrial, unsurprising since post-exertional malaise or symptom exaceration is the hallmark symptom.

(2/3) We still do not really know how safe CBT/GET were in the #PACEtrial for #MECFS. All the data on the severity and duration of "non-serious" adverse events was aggregated together? Furthermore, there was no data published on "non-serious" adverse reactions?

But then they run into difficulties with trial methodology.

How do you make sure that everyone receives the same treatment if an intervention is individualised?

Well, that's an issue. And we don't know, because we can't see how much GET each ppt received.

(Sorry to mention #PACEtrial again)

But... the #PACEtrial manuals make it clear that it is not the increases ("fixed" or otherwise) that are important but that:

"A central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME setback."

This is what is so damaging.

This gives those who wish to distort the argument, ample room to shift their meaning whenever it suits them.

Even in the #PACEtrial itself this is clear.

GET is defined as "negotiated, incremental increases" in exercise duration.

I know I am preaching to the choir here. I just wanted to express a few thoughts about how the phrase "avoiding PEM as much as possible" can be weaponised against pacing. We saw how APT in the #PACEtrial used an inappropriate 70% rule which Leonard Jason has rightly criticised, PMID: 28805518.