Discover and read the best of Twitter Threads about #PACEgate

Most recents (3)

🧵 thread

I never thought we would have to take the old stories out of mothballs again. 🕸🪰

But in 2022, the German institute IQWiG recommends the harmful treatment GET for mild and moderate ME patients.

So here we go again... 😮‍💨 What is Pacegate?

1/23
IQWiG's recommendation to GET in mild and moderate ME will result in many bedridden patients. It refers to the discredited PACE trial. Statistics professor Bruce Levin called PACE "the height of clinical trial amateurism."

2/23
Already the inclusion criteria of the PACE Trial are non-specific. The Oxford criteria are so broad, it is questionable how many participants had ME. In 2015, the US Agency for Healthcare Research and Quality wrote "[The Oxford criteria] may impair progress and cause harm."

3/23
Read 27 tweets
🧵Die Empfehlung des IQWiG zu GET bei milder und moderater ME wird viele Patient:innen in die Bettlägerigkeit bringen. Sie bezieht sich auf das diskreditierte PACE Trial. Statistikprofessor Bruce Levin bezeichnete PACE als «Höhepunkt des Amateurismus bei klinischen Studien».
1/22
Bereits die Einschlusskriterien des PACE Trial sind unspezifisch. Die Oxford-Kriterien sind so breit, dass es fraglich ist, wie viele der Teilnehmer ME hatten. 2015 schrieb das US-Gesundheitsministerium, über die Oxford Kriterien: «[they] may impair progress and cause harm».
2/22
Die Teilnehmer des PACE-Trials wurden gezielt beeinflusst. Vor dem Start des Trials erhielten sie Informationen, dass «CBT eine wirksame und sichere Behandlung ist» und dass «die meisten Menschen mit CFS/ME durch GET entweder 'viel besser' oder sehr viel besser' fühlten.»
3/22
Read 26 tweets
This thread supplementing @GeorgeMonbiot's column is arguably even more compelling.

It shows how bias & protectionism intrude on clinical research, bypassing the peer-review system that is there to protect the public.

Too often eminence, not evidence, carries the day

#mecfs
The "friends-of-friends" network guarantees that influential academic figures can effectively mark their own homework, distorting the scientific record and -- for good measure -- undermining the principle of evidence-based clinical practice

#MEcfs #pwme

thesciencebit.net/2018/11/03/the…
An inherent class system empowers privileged professionals to punch down hard on patients who have the temerity to challenge the quality of their clinical work.

In psych fields, this includes the power to dismiss critics as mentally unwell.

#MEcfs

thesciencebit.net/2019/03/21/if-…
Read 11 tweets

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