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Was there any mention at the meeting of a new annual report?

That's the problem - people can comment on social media in seconds, so hundreds and thousands do it. So the result is an infinite fire-hose of comment which no charity in its right mind should be attempting to answer. I recognise the tension with the disability access issue but I don't think we...

I'm not sure I even see a lot of value of a charity endlessly discussing stuff on social media. It's not where I want them putting their effort, but perhaps I'm old-fashioned (I don't engage with social media).

I can easily imagine a severely ill PwME being made permanently worse by the exhaustion involved in travelling, even on a trolley (I think we've discussed this before). Karen's mum said that Karen was exhausted just by the stimulation of noise and disturbance in the hospital, and long-distance...

Just saw an interview with Karen's mum, the Chair of BACME, and Chris Ponting on Sky News about this. The interviewer was very good but obviously wasn't in a position to understand what BACME really are. I was horrified that Karen has been stuck in hospital for a year because she's too ill to...

Do you think you're getting closer to something that might be measurable in the blood when these episodes are happening?

What is Invest in ME Research doing these days? Are they still active? Can anyone link me to their annual report? [Edit] Found the annual report.

Can anyone give me a link to the MEA's latest annual report, chairman's report, or whatever they call it, please? Will a new one come out at today's meeting? [Edit] Oh, found it, but no thanks to the MEA website.

I hadn't thought so. I first heard about it decades ago, when I think the ME charities were pointing out that head injury was one of the ways that you could get ME/CFS. I remember being (misguidedly, obviously!) annoyed that they seemed to be watering down the definition of what I thought was a...

We've heard for years about cases of ME/CFS after head injuries, though (but bearing in mind what you said about coincidence). I wonder if there are any stats on what percentage of people who have a head injury develop ME/CFS, and how that would compare to the 11% (?) or so of people getting EBV...

We have shedloads of people catching Covid, which we know can trigger an ME-style Long Covid. Does this give us a chance to catch the biology in action?

Interesting. I've always thought of my ME as post-viral but I started feeling a bit rubbish for a couple of months, though still able to live life as normal, and then got a flu-like illness that really scuppered me and a second that made me bed-bound for years. Lately, I've been really done in...

Thank you! That's very good, and it's amazing to me that people are still making these claims in public for the efficacy of rehabilitation at this point. You said in your reply: I'm wondering if I've misunderstood you. Don't you think that most cases of ME/CFS are triggered by viral infection?

Thanks! I hadn't realised it wasn't a review. I just hate to see that kind of baseless stuff left to stand.

They're very good. But I don't see a response to Marku Partinen's review, which contains, for example, this statement: "However, people woth ME/CFS may get much better by rehabilitation. They ,may be able to return to work or to go back to school ME/CFS is not "chonic", but it is, unfortunately...

For punters as ignorant as I am, from the National Cancer Institute: "(a-feh-REE-sis) A process in which a machine removes blood stem cells or other parts of the blood from a person's bloodstream then returns the rest to the body."

Here's #ThereForME's Twitter account, showing the advent calendar posts. Great to see all these messages of support (I was pleased to see one from Rory Stewart, I'm just reading his book).

I'm glad someone is asking this question!

And yet we see @Jonathan Edwards putting up his paper on Queios for comment and Chris Ponting putting DecodeME preprints up. Are we seeing anything at all from OMF? Wouldn't it be a good idea to put preliminary versions of papers up so that they can get comments and strengthen the papers, and...

That's amazing - well done!