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Hey @guardian @guardianscience This would be a really interesting dialogue to continue if you opened it up to the majority of researchers who don’t support the PACE trial and have good relationships with patients, instead of just giving Sharpe a platform. theguardian.com/science/audio/…
There are so many flaws in Sharpe’s argument that I won’t be able to cover them all myself (due to ME), but for one, his attempt to differentiate between ME and CFS to justify their work when he knows full well that in practice it is all considered the same. @guardianscience
This means that if you are anywhere on the spectrum including #SevereME (see #SevereMEday yesterday) with extreme exercise intolerance, then you can be put forward for CBT/GET, and actually many Severe patients were formerly moderate before these “treatments” @guardianscience
Even Sharpe’s understanding of ME or CFS is rudimentary (or being selective) not once does he mention the defining aspect PEM - Post Exertional Malaise which I can only describe as a severe nervous system reaction to any exertion, it’s not just fatigue @guardianscience #guardian
I hope that #guardian readers/listeners intuition tells them something is not quite right about the PACE trial when Sharpe claims he is still responding to complaints for half a day, every week, 8 years later & “it just needs to go away” @guardianscience #badscience #mecfs #pwme
The most infuriating comment is that it is “Old news”, how can it be old news if the PACE trial still shapes policy in the NHS? GET and CBT are the only available treatments for people with ME and CFS in the UK, and harm continues to be done. @guardianscience @guardian #mecfs
Sharpe’s reference to science colleagues who experience abuse an criticism is selective as it only refers to psychiatry in Denmark, Norway etc. Which accounts for a small proportion of ME and CFS researchers. @guardianscience #mecfs #myalgicE
I find it to be a real double standard of Sharpe’s to want #psychology to be included in the scientific community, but at the same time is not willing to recognise the majority of #Mecfs research which is biomedical/biological. It’s clever framing on the @guardianscience podcast
An example of the PACE trial still creating a stigma around #MyalgicE and hence maltreatment, particularly of young people. This is a big issue. #standupforgigi @guardianscience #humanrights #NHS #donoharm
Also it was a pre-meditated move by the @guardianscience weekly #podcast to essentially say “we’ve listened to the complaints but we’ve taken it back to the perpetrators for a biased response” 🙄 Allowing Sharpe to cement his narrative in place. #pwme #mecfs
