The funding should start to come once we have something to research. Problem is that we don't yet, and even if there was a big research fund...
No, but I guess anyone could get contractures from very prolonged immobility?
Thank you for that, it is really interesting. It's always heartening to see people stubbornly persisting at something and questioning received...
I have the same concern about being asked to account for it. I couldn't easily say what I spend mine on anyway because it changes so much. Some...
Sorry, I'd missed @paulendat's idea about recording it. It wouldn't be quite the same for members in the wrong time zone (or just in the wrong...
It'd probably be the middle of the night for our members in Australia and New Zealand, though. They must be something like 15 hours ahead of...
I'd enjoy eavesdropping on it, but the timings might be tricky—we have members in the UK and Europe, NZ and Australia, and various parts of north...
I understand that, and agree. But once we're testing drugs that modify the underlying cause of ME/CFS, the changes should be more visible. We're...
Yep. The comment was in the context of mildly affected people who're well enough to take part in trials. I still think a direct comparison to...
I understand, but we're talking about governments. Who will farm it out to private contractors, because it's not what governments do. Who may...
Yes, but what I struggle with is that there's still a loss of control. Processed data is always processed in order to use it for something, and...
Hear hear! I admire the ability to even follow trains of thought like this, let alone hold them up and interrogate them. I started reading the...
It'd be a good way to do it, but the privacy issues would be a big hurdle. Assuming people were given a choice, many wouldn't consent.
I don't think the British government does, but I wouldn't really expect them to; it would make much more sense for the NHS to do it. Where NHS...
I don't think so. When it started I was well enough to be working full time, and the symptoms weren't like the post-exertional effects of ME/CFS....
Only by some, though. Just because they have loud voices doesn't make them right! :emoji_bouquet:
Maybe as part of their measures to try and ensure participants have the same illness? The fact that ME/CFS could be several different conditions...
Me neither, but I never worry about it! Even if I only watch from the back of the lighting box, I can still see most of what's happening in the story.
Yep. Mostly the same pattern: wake up unable to move my arms and legs, which passed after 45 – 60 minutes. It left me with really heavy-feeling...
[Port Talbot accent]: Jo the didge-it.
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