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I hope you get through it okay, @Sarah94. I hate those journeys into the unknown with tests. I haven't considered lethal force (yet), but I have fantasised about having a neon sign on my wheelchair that says Oh Just Sod Off Will You, which lights up when I press a button.

(In case anyone wonders why I didn't include DecodeME or the involvement with the NICE committee as exemplars...I assume we'd all put those at the top of the list anyway!)

I've followed the developments of the Commission on Social Security project for a couple of years, and as they've got a live-streamed event planned, I thought it might be worth posting about it in case others are interested. Their main concern is the development of proposals for a "decent"...

From what I've seen, most people mentioning that they haven't been invited to submit a sample have thyroid disease. Whilst they said it felt frustrating, they generally understood the reasons. Their disappointment seemed mostly to be about the fact that they've wanted to take part in biomedical...

I see that as more important than government programmes anyway. Top-down initiatives are often poorly designed and targeted, and are vulnerable to being dropped as soon as the political wind changes. Real progress is possible when professionals with expertise and/or influence become interested...

It might help if you cleared the cookie that the survey website placed on your computer. You'd lose all your responses, but you might not need a whole new account? You shouldn't need to clear all of your cookies (and therefore sign out of, or not be recognised by, other accounts), just look for...

I loathe the term spoonie, though, and I wish people would stop using it. Apart from infantilising patients, it suggests that people with energy limiting illnesses (a) know how many "spoons" they start the day with, and (b) the quantity diminishes predictably in line with effort expended...

I think it's a carefully placed get-out clause. He knows that at some point, the pathology that causes or perpetuates ME is likely to be unpicked or a reliable biomarker found, and it could come whilst he still has some public profile. "Yes, but I wasn't talking about those patients. They have...

Me too. I actually worked my entire career with ME brain fog, but the severity fluctuated and what you've written is a good description of the times when my function dropped right off. When I also developed B12 deficiency, which added memory loss so bad I sometimes couldn't remember how to...

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I thought I'd posted this article from Benefits & Work about ESA compensation payments—I can't find it, though, so I obviously dreamt it. It's about an issue specifically affecting people who were transferred to ESA from the old Incapacity Benefit, from 2011 onwards. Some of these claimants...

Slightly weirdly—pressure. I get the worst pain in my quads when I'm lying down, but turning over and lying on my front relieves it almost completely. I can't stay like that for long because it hurts my neck, but sometimes I can dampen down the pain for long enough to get to sleep.

Fantastic news, well done to you all. I got my email and filled in my details earlier; I stumbled a bit on the name-on-birth certificate question, but it was my slow brain, not the form. All submitted now. :thumbsup: I have co-morbidities too, so I may not be asked to send a sample, but I've...

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Seeing as we're nearly halfway through the month already, it might be worth contacting them to check? Normally you'd have heard something well in advance of the end of the award, even if it was only that they'd reviewed it on paper and didn't need you to do anything. That may have changed during...

I had one too, and they were great. You could choose whether to screen calls or not. I remember it looked complicated to set up because there were a lot of functions, but once I'd found my way round it, it was easy to use.

Will do. I'm not hopeful, though! They can reduce potassium levels or shift the electrolyte balance, which will be the reason you're being monitored. In HypoPP, glucose intake has the same effect, as does salt intake. Other things that cause unhelpful shifts are alcohol, getting very cold, or...

Sorry to hear that, @Shadrach Loom. It must be a real struggle. This is another N=1 anecdote, and I really hesitated about posting it. But here goes, in case it's useful. I also have problems with steroids, even the small topical doses in my asthma inhaler and nasal sprays. The inhaler leaves...

Oh, that's helpful, thank you. I haven't even started on mine yet in case the delays are still ongoing by next year. This is entirely possible, given that some people whose reviews are/were due this summer may be postponed until then!

I didn't actually ask for a GP letter, just my records. It seemed to be enough for them to make my award, and next time I'm only planning ask for the summary record starting from the date of my last claim, which I can get fairly easily from the receptionist. Since I stopped work eight years ago...