I don't mean to blame Charles—he is a very valued member of the community. And it's probably not his job to do social media comms. But I hope he recognises that their strategy does a disservice to his commentary.
Charles does so much, and I don't think he's got the media savviness required to lead a prominent charity in 2023. Things are different now. I remember reading that the MEA had 6 full-time staff not long ago. They need to get someone in with expertise in comms and PR. Action For ME has been...
There's an MEA response, and in true MEA sfashion it's not clear on their on their social media posts that it's a response. So now people—many of whom haven't read the MEA piece—are asking why they are endorsing the article.
The MEA desperately need some new, more savvy staff.
It would be good if someone could compare the snippets from the draft version of this paper with the final piece. Should give us an indication of what the reviewers thought. @dave30th
The Guardian article has been corrected ('chronic fatigue' removed, and prevalence figure corrected). Unfortunately, the content of the article remains!
Yep, important to warn of potential harms. I've not seen much of that. I believe my trigger was in part erroneously being prescribed amoxicillin for what was likely a trivial viral illness. I still believe antibiotic use might be playing a large role in onset of ME in some patients.
Nope. It's all presented as fact. Lot's of claims of "this is why" and "this is how to stop that". I have called them out on this on Twitter. EDIT: e.g., here on PEM:
I'm afraid they are.
Remission Biome is essentially PhoenixRising on steroids. There's a lot of nonsense being pushed. They seem to just ingest any rudimentary science and based on that push extremely expensive interventions that 95% of patients would never be able to afford.
I just started this video and the first claim—that delayed onset muscle soreness (DOMS) after a workout is caused (primarily) by lactic acid—seems to have been debunked a while back.
TV docs looks very different from stuff like Voices From The Shadows. There are production companies who do this day-in-day-out for TV and know the format and recipe. It could be an idea to pitch to some of them who have made docs on similar topics before. I don't know enough about how the...
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