I haven't seen anyone here showing an attitude of 'it's not my problem'. I don't understand what point you are making.
If by illness community, you mean all the scattered individuals then I disagree. Thousands of sick people struggling to survive and get through...
We can't know that. As I said in an earlier post, most donating is done privately. I expect there are some who do both. I don't like sick people...
But how do we know they don't? I don't like to criticise anyone for their choices of how they spend their money. Most donation is done privately....
I think it may be significant that the emphasis on fatigue for diagnosis, sometimes as in the Oxford definition to the exclusion of all else being...
I haven't dived in with my usual half baked rapid response on this thread as I needed time to think about it and I'm not sure I have anything...
Easy money.
That's an interesting idea, Hutan. If they didn't charge a membership fee, they could recoup a lot of that by not publishing a paper version of...
I don't fundraise from family and friends because I think it's up to them what they donate to. I feel bad enough even mentioning my own symptoms...
I'm getting increasingly confused by this discussion. I thought PEM by definition referred to the experienced phenomenon of (usually delayed)...
As you would expect, those researchers who join us whose papers are heavily criticised react badly. I think anyone whose paper is published can do...
I see no point in trying to engage with bad researchers and clinicians on social media of the brief and transient variety like Facebook and...
Another important avenue we probably don't use enough is emailing researchers directly, either to point them to the discussion here, or to invite...
I think a fact sheet about PEM needs a way to capture the full range of people's experiences of PEM in ME/CFS, and not assume one sort of disease...
I think they're getting around it by funding BPS studies for MUS, FND, persistent physical symptoms etc, and including ME/CFS. And of course there...
I strongly dislike the term flare for PEM/crash. I can't quite explain why. Maybe because to me it implies a particular symptom such as pain...
Sigh. I'm pleased for Miranda that her health has improved, and that she is able to enjoy walking in nature. I just wish she understood that not...
Thanks, @AliceLily, I think rolling PEM and the blurred line between fatiguability and PEM is important to be included in descriptions of PEM.
I take Charles Shepherd's comment as a genuine expression of appreciation of good things Neil Riley has done in the past. What I find difficult...
12) It turns out that there were more than 100 applications to this call and the 4 that received funding had a near perfect score of 14.5 out of...
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