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Jennifer Brea @jenbrea
, 12 tweets, 4 min read Read on Twitter
WOW. What magical thinking. This just shows how little Prof. Sharpe knows about us. Fact is, many people with ME have sacrificed their health/bodies/and yes, their lives, in order to bring these requests and publish in academic journals with the goal of ending graded exercise.
I imagine he thinks the 12,000 people who signed this petition were phantoms?…
And that those of us who complain on social media are just a small group of fringey activists, akin to climate change deniers?…
The fact is, we have been harmed, and we have been speaking about those harms for *decades.* This is never acknowledged, and the basic flaws (and they are numerous) in the evidence supporting these treatments are never addressed directly, on their merits.…
Rather there is evasion and the use every possible logical fallacy. This one is the most popular: We cannot know our own minds or understand the research or have any role in its critique because we are patients.
Nevermind that some of us are good and properly trained: in statistics, biochemistry, immunology, neuroscience; that some of us “patients” are also MDs and Ph.Ds; or that numerous non-patient MDs and Ph.Ds are also speaking out against the innanity:…
What they did with the PACE trial was amateur hour. That is the most favorable reading I can possibly give it. What I don’t understand is how the universal response in the UK has been to close ranks, even as they have been eviscerated in the American academy.
It’s like nothing exists to certain researchers and certain journalists but their own self-delusion, which needs narratives such as “patients are militant” “patients have no right...” “those aren’t really patients at all...” to survive.
If they listened to pwME, read the critiques from scientists, looked at where the field is headed, and engaged in good faith, with the goal not of self-defense but of understanding, of truly advancing science rather than pretending whole bodies of research did not exist...
But they have staked far too much in a lie. Reversing course now would be too costly. Fact is, if you could just admit you were wrong and say you were sorry, you would save so many lives and that would honestly be the end of it.
Then we could all move on and get about the business of trying to understand and cure this thing, which surely should be the point of all of this?
Oh and I forgot to say, HT @NicolaCJeffery!
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