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I'm currently reading Doing Good Better (about effective philanthropy) and noticed an average figure of $4 raised for every $1 spent on fundraising (though the range must be huge, because for one charity they looked it, it was $100 for every $1). But if that's the average, I wonder if it would...

I agree with you that we should be able to fund research at a far higher level than we do, but for some reason, we don't. I'd love to see some research done into why this is so. I seem to remember MERUK (?) saying years ago that for most diseases, it's sufferers and their supporters who fund...

I think this key point needs amplifying.

I think that the issue with #MEA is that not only are the costs and work hidden but that the output isn't clear, in the sense that it's not clear what output your core of salaried people are responsible for. To me, on the outside of all those private Slack, FB etc. conversations...

Hi Jen - I hope you're recovering well from your surgery and are taking it easy. Sorry it has taken me this long to respond to your posts, and there's no need at all for you to respond to these (especially while you're recuperating), but here goes... I think that saying the kind of thing that...

Do you know if he's published anything on this (or is on video talking about it anywhere), please?

What does he say about them?

I doubt that people are aware of the costs, because it's all happening behind the scenes and in private FB and Slack etc. groups that people who aren't part of it aren't aware of. I have no clue about the costs and my unthinking assumption has been that the costs of #MEA consisted of maintaining...

I've started a thread specifically about donating to the UK fund, in which I've used some of your arguments to explain why it's needed, @JenB, and have explained the donation process (a lot of PWME struggle with sequential, multi-stage things like this, as you'll know :), and there's been a bit...

The donation link to fund the UK organiser is here: https://www.meaction.net/grow-our-uk-team/ Gift Aid If you pay tax in the UK, you can gift-aid your donation and it will be worth an extra 25p for every £1 you give, at no extra cost to you. #MEAction isn't set up as a charity in the UK but I...

(This new thread arises from discussions on a couple of other threads - it seemed like a good idea to have a new thread on the 'how' and 'why' to support this very important call for donations.) #MEAction want to hire a UK-based, full-time organiser for its UK advocacy, campaigns and medical...

The difficulty is that in saying that ME is 'primarily biological', #MEA is currently making a positive statement that ME is partly psychological in origin, and there's no evidence for that - and it's something that informed PWME won't support. I don't want to see #MEA putting this view out...

Just removing the word 'primarily' would do the job for me. :) And I think it would be very easy to knock down that house of straw. They don't have any remotely sound research that points to anything of the kind, and the more they expose their bad science, the better. The best they can produce...

I'm trying to make the distinction between psychological causes and psychological consequences. I think that what you and @Esther12 are talking about are psychological consequences but that when people read the offending sentence they'll assume that we're talking about a disease with...

I wonder if the Voices team have ever considered doing a short version for the purposes of advocating to busy people in positions of power who wouldn't watch a 30-min video? I must admit that I've never watched VftS, and I've seen quite a few patients say that they haven't - I recall it being...

It doesn't seem that way to me at all. Doesn't 'Cancer is partly a psychological disease' sound wrong to you? Anyway, I'm off to bed. :)

That's where we differ, and I think it's very important that that conflation is avoided. Perhaps that's the basis for others using the offending phrasing - but they need to stop it, because it's based on an imprecise use of language in the context in which they're using it.

And that's the key distinction. One can argue that the state of having any disease or injury will have a psychological aspect to it but there's a huge difference between saying that and saying that a disease or injury itself has a psychological component in its cause. You wouldn't say (I hope)...

The reason I'm asking is that the $100k fundraiser is going much faster than this one and I wonder if the comparison is raising in people's minds the question of whether this one is going to make it to the £55k. (I'll happily delete these posts if you like - I know the dangers of talking down a...

Sorry to hear about your surgery - I hope you have a swift recovery. :) I think a scheduled convo here could be really useful.