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I guess the 'genius' category might include viruses that appear to cause something relatively minor – like EBV and glandular fever/mono – but actually could underlie much more serious conditions, without anyone suspecting a thing? No-one's going to spend billions on a bug that makes teenagers...

This is why I've given up on membership organisations and just donate directly towards research when I've got a bit of spare cash. I know you can't escape politics in any organisation, especially those run by volunteers, but it just exhausts and depresses me. I want to see money going towards...

It looks from that email as if he knows very little about the conference or the other speakers. I wonder if he's just got caught out, not having enough time to look into it thoroughly?

I've used tramadol for many years. I do eventually build tolerance, but I can manage it by rapidly reducing the dose, and then putting up with a pretty unpleasant 10 days on one tablet a day. After that, I start again on a low dose, which works well. Without it, I'd have little quality of life –...

I was prescribed one by my GP years ago, for night-time muscle pain. They seem to work in part at least by distracting you from the muscle pain by heating up the skin; it didn't help me enough to put up with the skin sensation, which I found a bit unpleasant. The 'magic spray' used on...

There are other services with extremely knowledgeable advisors, including Benefits & Work and Fightback4Justice. By the way, PIP isn't means tested, so you can claim even if you still have capital that would disqualify you for other benefits (£16k or more). It might be a good way to start, as...

Odd, isn't it, @Kalliope? It was funded by Solve, so I guess we can assume they did.

Thank you for that!

Interesting that there are different approaches to this. All my GP notes and blood test results for the last six years were included. It's easy to separate the consultation notes made by the GP who does his own, complete with typos from rushing; and those translated into complete sentences...

I agree that many people will be scored this way on various descriptors, but in some cases it's open to a challenge. For instance, if a combination of DWP guidance and caselaw shows that X can be regarded as an aid; and the claimant can show evidence that they need to use, and are using, that...

:laugh::laugh::laugh:

I don't know of any specific research, but as sensory sensitivity occurs in many illnesses – all the way from life-threatening conditions to hangovers and colds – might it be difficult to characterise it specifically in ME? (I don't actually know the answer, that's just the first thing that...

It depends on whether it meets specific descriptors, I guess. I don't think the descriptors are a useful way of assessing disability, but they are what we're stuck with at the moment. For instance, I have to use a device to help with my medication, as I've previously taken overdoses of tramadol...

I also wonder if they pick their battles. If your application shows how well you know and understand the descriptors, and you can demonstrate clearly how you meet them, you're also more likely to be able to challenge an adverse decision. I don't know whether or not this is true, but I spent...

I agree. I've had vestibular problems all my life, and they are tiring – but it's not the same as fatigue. You also learn to manage them, even as a small child. Nowadays, due to adaptation and avoidance of triggers, the only time I have significant problems is when travelling (Phenergan helps...

I've been hesitating to comment, as I feel so lacking in knowledge, but does the 'sickness behaviour' response come into this anywhere? ME has always felt to me like having a virus, the varying levels of severity representing different points in the arc of the immune response. I can only...

...and children, when their ME symptoms are doubted by doctors. I suspect it might be another one of those things that'll turn out to be more complicated than it looked at first sight, though – that's usually what happens! :rolleyes:

If it's anything like EU arts funding, people will actively avoid applying! It's a shame, there have been some brilliant arts projects with genuinely radical thinking, but if you're not part of a large organisation, the bureaucracy just isn't manageable. I once got £5k for a project – a tiny...

Some of my thoughts in response to the article have already been elucidated, but my main worry is for children and young people being looked after by families – and doctors – who don't know much about severe ME. We have to remember that sick children can't advocate well for themselves, and that...

@wigglethemouse, doesn't the same thing apply re. schizophrenia and donations to the Biobank as with severe ME? I have two schoolfriends who developed it whilst in higher education in the late 1970s; both still live difficult and sometimes chaotic lives, with periods of significant illness...