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I get it too. I'd always attributed it to the immune flare I get after exertion, as I feel the same way when I have a virus coming on. No idea whether that has any basis in fact, though!

Just to say a belated thanks to @Andy and the rest of the team for the presentation yesterday. It was so good for people to be able to put faces to the names, and see a team genuinely engaging with patients.

People may not yet realise that it's a symptom. It might seem an odd thing to say, but I had a lot of issues that I wouldn't have been able to identify as individual symptoms until I started having conversations with other patients. It was only when I realised that some people didn't have...

In the middle of a pandemic, isn't testing the flipping government's job? Even in the US?

Sorry, my reply came out much more negatively than I intended. I was hoping to learn more from others' responses, whilst acknowledging that I've made exactly zero progress in fathoming it out over the past four decades! :laugh:

For me, nothing (and believe me, I've tried!). I'm relatively mild, but I still have to space out things like a trip to the pool, meeting up with a friend, cleaning the house, or batch cooking. They always have to be followed by days where nothing is planned at all. Just sitting it out, and...

My approach has been to find the best models by trying them out in the Disabled Living Centre (these tend to have a variety of names depending whereabouts in the country you live), and then looking for that specific chair secondhand. I've never been too unwell to visit a centre, though, and I...

I'm not sure, but I think 'monstrous' would probably cover it. It's designed to tackle all kinds of terrain, hence the low-pressure lawnmower tyres and the fat front castors (I enjoy birdwatching, so I wanted something that would go through mud and ruts as well as pavements). I find it very...

I saw that. Whilst it's too early to know whether some patients will develop ME, I do wish people were warning them of the possibility and advocating rest and pacing. It wouldn't do them any harm, and it might save them a lot of misery. This. This is what annoys me so much about the BPS crap...

Lots of models have the option of adding a tilt-in-space module. I decided to go for one when I bought my latest; I don't use it as often as the lift function now I'm no longer working, but when I do need to lie back, it's a brilliant thing to have. This is a similar model to my chair (mine has...

That looks fab! I haven't got a pusher, so mine's a big electric jobbie with 6" wide lawnmower tyres, but it's not as cool as that. (I do tank around my sister's allotment on it, though! I park up under the apple trees, tilt back, and sit in the shade to watch people work. :laugh:)

It's great that numbers have gone up so quickly. I saw a Facebook survey from the MEA earlier, asking whether people had signed up – quit a few were saying they hadn't yet, but planned to do so.

The most important question for me is still 'What is PEM?' Until we understand that, trying to measure it or predict who's most prone to it is really problematic. It can be hard even for patients who've been ill for decades to be sure until after the event whether they've had PEM, an ME flare...

I've been doing swab tests weekly as part of the ONS study. The throat one can be a bit uncomfortable until you get used to it, mainly because you have to go right to the back of the throat (behind the 'arch') – it's really ticklish, and can make you feel like gagging slightly. But it's not in...

Interesting study – it's about time researchers did some proper work on this problem. It can make people's lives a misery until they figure out their trigger(s), but it's been swept aside by far too many doctors as an 'internet ailment'.

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...