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It just occurred to me that this seems to have started a long time ago but I don't recall anything being published yet. Part of the project, IIRC, was to see if the guts of PWME were actually leaking by developing a diagnostic test measuring stuff in the blood. So it sounded interesting. IiME...

If he wants to get the word out I think he should consider reducing the price of this ebook (not available in paper, though it easily could be) from £22. Ebooks have zero production costs - it seems odd to price this so high when it's essentially a campaigning book.

I doubt that Chris Ponting follows the forum closely - you might want to email him (and it was a good idea to bring this to his attention).

Well done, @dave30th.

The website auto-detects whether or not your MP attended the debate and provides you with a message accordingly.

It's a long time since I really seriously overdid it but when I did, I noticed that the timing of the PEM was different - but I can't remember whether it was a longer or shorter post-exertion delay. Curious about others' experience. I've also found that if I go out and then come back I know...

Thank you for answering posts. I was hoping that you might answer this post of mine (#74), which got 13 'likes', indicating that others were also concerned about this issue.

Was it the CDC who removed CBT and GET from their toolkit but failed to tell any of the doctors in the US that they'd done so? Very disappointing to see this pattern repeating itself.

This is an interesting idea. Is anybody doing anything like that? If not, can we get it proposed and/or put out to tender by one of the charities and/or the MRC/NIHR?

I'd love someone to invent an actometer that measures when you're horizontal. That would be hugely informative for PWME.

Yes, exactly. @Action for M.E., can you please point us at detailed information on your sources of income, that is, how much money comes from each source, and what the name of each donating body is?

@Jonathan Edwards, on p. 15: Funding sources The principal funding sources for Action for M.E. are charitable trusts, community fundraising and events, Supporting Membership income, and individual gifts. Other funding sources include Big Lottery Fund, Scottish Government grants, Gift Aid...

See p. 14 of this annual report for 2017/18: https://www.actionforme.org.uk/uploads/2017-2018-trustee-report-accounts.pdf

Current medical advisors are Prof Julia Newton and Dr Gregor Purdie: https://www.actionforme.org.uk/about-us/our-medical-advisers/ I can't see who their scientific advisers are and I expect the funding is in a report somewhere but it's not immediately visible on the website.

https://www.bbc.co.uk/programmes/m0002d9g Edit: This is yesterday's 8:30pm programme but seems to be the wrong one. Can anyone find a link to the right one?

I don't remember anything about this - did I miss an announcement? Can you say more? If the MRC are putting out a call for biomed proposals then it helps promote the idea that ME is a disease for which biomed proposals are appropriate, and it would at least help fight the 'all in their heads'...

Just wanted to belatedly thank everyone involved in this - not just on the day, but in all the years of hard work that led up to it! Patients shouldn't be in the position of having to fight off bad research being applied to them and being defended by a powerful establishment. Our position is...

Full debate on YouTube:

I want to watch the start live, because this is a historic moment for us... and I'm taping the whole thing. :)

@Action for M.E. - I'm not well enough currently to read much and so haven't read the original document and have been able only to scan Trish's complaint and David's article. But if David is describing this correctly and the document has already gone out to DWP then it would not enough for AfME...