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A thread to collate studies and reports on the historical (or current) level of ME/CFS research funding in the UK. I'm primarily interested in public funding, but reports and studies on charity funding can also be included here. I'll start with the UberResearch/Action for ME report from 2016.

No, the press release is written when an article is published (usually if it's deemed as high impact and might be reported on in the media) by someone in the department/at the university. Most universities do this. Nothing stange about it.

We have the "forthcoming individual patient data meta-analysis of exercise therapy trials for CFS/ ME" to look forward to. I can hardly wait.

That's a decent statement and avoids technical details that don't fit well in newspaper letters. Hope it is published.

Looks like the first author works for this lot (who sell vitamin injections etc): https://gb.revivme.com/

I hope you will submit these comments to the journal @ME/CFS Skeptic. You know this stuff well.

Again, I don't want to take this too far off topic, but my post above is about responses to the White commentary and media.

Yes, I knew Andrew had left but had forgotten. I don't think FME was ever intended to be one organization; it was meant to bring all the charities together under one umbrella. Today would be a prime example of how FME could work; you would have FME issuing a statement in response to yesterday's...

Yes, don't want to go too far off topic, but one more comment: We tried to get them to use Slack to coordinate advocacy and the type of response you'd want to see today. We failed miserably.

We were meant to have ForwardME now as a unified voice (when I was in MERC PAG and was involved with their meetings, we spoke about their being more proactive and quicker off the mark). Now they've gone silent again and their subpar website hasn't been updated for the best part of a year.

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

I'd be grateful if someone could DM me the article PDF, or post here if you so wish. EDIT: Now received.

The Guardian article has been corrected ('chronic fatigue' removed, and prevalence figure corrected). Unfortunately, the content of the article remains!

With NICE's reputation being questioned, I have gone nuclear. Please retweet etc. No one else seems interested in telling this story.

Yes, that's it—well put. Complete lack of subtlety, nuance, and humility.

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.