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So is a broken leg partly psychological?

We're living in a world (thanks for nothing, PACE) in which the default assumption for many people is that we have an entirely psychological condition. If we want medical and not psychiatric treatment and to stop research funding going down the drain on psychological research instead of...

@JenB, would it be worth specifying what happens to the donations if the full amount isn't raised? The target (as you know) is £55k and you've said somewhere that you'll start looking for someone to fill the post when donations reach the halfway mark. But it might help encourage donations if...

My impression is that people aren't understanding the implications of the language that they're using, because it doesn't reflect the views I've seen them express elsewhere. But they need to pick up on this and make sure it doesn't happen again, IMO.

Sorry, meant to tag you in the above message, @JenB. :)

I wonder if your doing a live Q&A here would be a good opportunity not only for you to answer questions but for you to ask forum members here questions about how we see #MEAction. It might produce some helpful insights about how to boost your funding. @Andy has organised our science Q&As (and...

I think the difference is that something specific is more appealing to give to than something general. The UK Biobank suffers from this, I think. They're also 'infrastructure' that does nothing until a specific research project comes along and 'activates' it. The Biobank made a bit more...

I mean that I wonder if #MEAction looks like a general support structure that 'does nothing' ( :eek: I know! I know!) until a campaign comes along from outside and uses it. When I think of #MEAction, I think primarily of the website and the email list, and that's because when it started up, it...

I wonder if it's because #MEAction somehow looks like infrastructure, and people focus on individual campaigns? Would it help to be explicit about how that infrastructure has contributed to advocacy since #MEA was set up?

I've just realised that the title of the thread doesn't make it clear that there's a fundraising drive going on for this (it's always hard to title threads!). @RuthT, would you like to change the title to something like, '£55k fundraising drive for organiser of UK #MEAction' or something...

I've also seen that language before and I wonder if the people using it realise that by saying that ME is 'primarily biological, not psychological', they're saying that it is positively partly psychological. 'Primarily' means 'mostly' or 'mainly', which means that there remains a smaller part...

I think the issue is that it didn't change clinical practice. NICE took the PACE authors' positive interpretation of the trial results at face value and chose not to review the NICE guidelines that recommended CBT and GET. A proper, rational reading of the PACE results would have led to CBT and...

The agenda has been posted: https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2018-06-20/index.html And it includes sessions for public comments on both days. This page gives details on how to submit them: A one hour of public comments via telephone will be scheduled for the first and...

I just came across something in this week's New Scientist (a UK science mag) about a Stanford professor named Mark Jacobson who last year tried to sue for libel another researcher who published a critique of his climate-change work. According to TheScientist (not the New Scientist), "Jacobson is...

I think there's a distinction between realising that AfME could have a big impact if it spoke out against PACE (on the one hand) and realising that its unique position would mean that its statement could have a much bigger impact than that of other charities who have spoken out. Which makes it...

I agree - they're in a uniquely strong position to have a huge impact. Taking that step would require taking the time to understand the now well documented problems with PACE, and would also need integrity and courage. @Action for M.E.

Stellar job again, @Emsho! Fantastic video clip of you in that TV thing (hit 'play' in the above Twitter thing, folks, and you can see the 30-sec news clip). You really put the message across powerfully.

I think it's possible to have both passion and evidence - just not in the same section of the text. I hope the organisers of future campaigns will try to work with people like #MEAction who were set up to support exactly this kind of patient-led activism by individuals and ad-hoc groups, and who...

Thanks for keeping us updated on this, @Andy. :)