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Completely get that, and the need to exploit whatever angles you can. You might even be able to frame one aspect of the research as a useful contribution to understanding the economic burden of diseases like ME/CFS and long Covid. As well as the core questionnaire, maybe it would be possible...

I've no idea what's actually happening in the body, but for me the adrenaline pump feels like the backup battery kicking in. I don't get it unless I've overexerted, and one of the problems is the inability to switch it off when the 'emergency' (i.e., trying to complete a mundane task rather...

I agree it's potentially a useful hook to attract attention to a project, but as others have said, returning to work is the most challenging step for people who've regained some of their function. Unless you're fully recovered it's impossible to gauge how much work you could do until you try it...

This! I was trying to say something about it when I was waffling about food yesterday, but couldn't muster a string of words that made sense.

I suppose if they got an excellent response in a high proportion of participants there might be an ethical argument for moving quickly to Phase III, but presumably they'd have to have the funder on board with it. I imagine it'd be less likely to wash if they needed new funding for Phase III...

This isn't really the right place for this, but as I always forget when it is the right moment, here goes! It's worth bearing in mind that food can have an impact on the likelihood and severity of PEM in some of us. And if research participants need to travel or stay away from home to take...

I'm not sure what the answer would be generally, but I haven't come across it in the UK. I've been given numerous medicines speculatively, but in most cases it was pretty clear whether or not they helped. That seemed to be enough to decide whether or not to continue—measuring benefits or...

The big reduction in the follow-up period suggests that might be the case. When we find something that really helps, the emphasis is more likely to be on extending the follow-up period to see how long benefit is sustained.

As it's about heeding your own needs instead of listening to cranks, maybe the Domestos Protocol. "Kills 99.9% of all known blatherskite!"

That's a worthwhile study on its own, to be honest.

I guess you could do a study on pwME and controls over the age of 65? There are plenty of sporty older people, of course, but there are also many who're no more active than folk with mild/moderate ME. I rent a bungalow on an independent living development entirely populated by them. A...

There've been people like this as long as humans have had language, though. The narrative changes, but the frame story and devices are the same. The only remedy is to keep reminding people they belong on the same shelf as implausibly-named princes with an urgent need to put eight million...

There's no copyright on names or titles. Trademarks can be registered and protected, but if this isn't sold commercially, it won't have one. It would be quite hard to argue passing off, too, given the limited scope for confusion between an experimental antibody assay and a club for people with...

:laugh: Like the apparatus to measure what percentage of ginger people have in their hair? That was once a thing. Okay, so it was my auntie's neighbour sat in a kiosk at the village fête trying not to look like she worked on the cheese counter at British Home Stores, but she raised quite a bit...

Yup. I decided it wasn't my job to educate them, so after realising the similarity between my needs and those of my elderly relatives, that's how I approached it. With people over 80 the focus is on making the effort of daily living safer and more efficient, so there are fewer risk and adverse...

Typically for me, I've no memory of it whatsoever... :rofl:

Just remembered something else about the approach: I decided to describe my difficulties in the same way you would a frail, elderly person who also has a chronic illness. Aside from the fact that it's pretty damning for young people to have to resort to it in order for their needs to be...

When I had one, I wrote down the five things that were most important to me. Now they could be backed up with sections of the NICE guideline, but mine preceded that. One of them went something like "My biggest priority is saving enough energy for essential things, because I can't increase the...

I'm not so sure about fault, since you only put multiple, positively-spun posts on social media if you're actively trying to hype something. They know that perfectly well. There are lots of people who're desperate to find something that helps, especially if their careers and mortgages are under...

I agree, but would make it brief and straightforward for now. New MPs will feel as if they've been hit by a tornado, and even experienced ones are starting a new job. The economy's in such bad shape that it might be worth highlighting the economic harm caused by long Covid—including the fact...