Search results

In the UK, housing allowance to cover rent is separate from other benefits, which is a big help. I get 88% of my rent paid; if I didn't have a 'spare room' (a small space where I keep my powered wheelchairs), all of it would be covered. This isn't universal throughout the UK, as there is a...

No, nor would I (if I could walk that far). If I did a comparable amount of work in the swimming pool, I'd develop swollen lymph nodes in my neck 24 hours later, and would need to schedule a couple of much more restful days afterwards. If I didn't, my symptoms would begin to flare; I wouldn't...

Personally, I wasn't diagnosed using any criteria in 1999. I'd been ill since 1976, and a major relapse was the reason for signing up with a GP in a city I'd moved to a few years previously. The GP did his best to exclude every alternative diagnosis he could think of. When after several months...

14,000 – wow!

I think that's quite wise for now, at least in relation to ME. Yes, the possibility of patients developing it should be mentioned, but for those people with symptoms not often seen in ME, it's useful to keep it in its own category until we know more. We might eventually see one or more...

'DecodeMe' is used in the subheading. I don't think it's really represented in the article, though.

True, but I'm inclined to think the most important thing right now is the story. If any of the influential people or organisations who're currently listening actually stay engaged, perhaps that's the time to approach this? The vast majority won't, and so it's arguably a waste of time trying to...

There are some important questions here, and you're right that we don't know nearly enough to approach answering them. I'd also add the 'multiple hit' possibility. For instance, my parents told me I was never quite the same again after being very ill with measles when I was eight; I then...

I haven't even mastered long division yet, which might give you some indication of my grasp of the subject! – but there are many ways to interrogate and interpret data already, and in three or four years' time machine learning will presumably have gone through another exponential expansion in...

I agree what others have said above, but I think it's also got horribly tangled up with the symptoms of clinical depression. Some patients experience a profound sense of inertia, and remain immobile all day for extended periods because they're unable to force themselves to move. As...

I agree, but he's both very unwell and on one heck of a learning curve. It probably took me three or four years after diagnosis to begin to frame my views and feelings about ME in language that was both reasonably accurate and appropriate, and by that time I'd actually been ill for more than...

This is just brilliant. HUGE congratulations to everyone involved!

It must be very worrying for extremely vulnerable people of working age, who will stop being eligible for UK statutory sick pay on 1 August (unless they have a fit note for the virus or another illness). We don't yet know what's going to happen as the restrictions ease. If the virus starts...

The nurse who did my coronavirus test this morning (it's a research project, I'm not ill) told me that they've had their training updated on how long the virus may survive on surfaces. She doesn't know the source of the information, only that it's been passed to them to assist with quarantining...

Some researchers have predicted that this will happen, but the virus is being so successful at the moment that – presumably – there isn't much pressure on it to evolve to be less likely to kill its hosts?

Me neither, and it seems to be consistent across the mild/moderate patients I meet face to face. When fully rested we can all do tasks with an aerobic component, and we feel great whilst doing them. Then tomorrow dawns – and worse still, the day after that. Our experience seems to be the...

Thank you for the link, I didn't realise that was out there. :) The friend's PVF took about 10 months to resolve (she was unable to work at all for seven months and had to do a gradual return), but fortunately she did make a full recovery. She never developed PEM or apparent immune symptoms.

But is there a difference between post-viral fatigue, and post-viral syndromes? My friend had post-viral fatigue after glandular fever/mono in her early 40s. I just checked with her and she didn't experience a whole variety of symptoms, only brain fog and feeling as if she was wearing 19th...

I wouldn't advise it, unless it's researched for ME – and that won't happen unless someone at least starts with an observational study on ME patients prescribed it for other conditions. It carries risks like all drugs, and needs regular blood tests to check liver & kidney function and blood...

Just an improvement in daily function. It's always hard to pin these things down, but other people noticed before I did; one said I seemed to have got new batteries, another whom I met for coffee after a gap of several months said it was great to see me looking so much better. Of course, some...