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Slightly off-the-wall suggestion, but I've just bought a restored Gimson & Slater Rock 'n' Rest chair from the early 70s. My granddad used to have one for his bad back and legs; they cost a fortune at the time, and restored ones aren't cheap now (I saved up for ages, and was gifted part of the...

My rheumatologist insisted that I had fibromyalgia. I may have – certainly have the pain – but I've never been diagnosed with it. She's the only who told me in all seriousness that ME and FMS are the same thing...anyway, I asked her to change it when I got to my next appointment, and she did.

I think there's a lot of sense in this, but we still need ME as an interim diagnosis. Partly because it tells the patient what they need to avoid doing (trying to exercise or work themselves better), and partly because it's a clear signal that their lives are changed significantly for the...

Or what they're supposed to be treating, or how written English works. Be awfully nice to see someone recruiting a practitioner to engage with local patients and ask what would help them.

I can't remember whether I posted my experience here (apologies f I have). Anyway, I had my first dose of the AZ vaccine on 27 February. My arm was a bit sore the next day, but I felt fine. Over the following days, my cognitive function recovered temporarily to pre-ME levels; I haven't had...

Wins the ME internet for the best analogy ever! :trophy@ :rofl::rofl:

It would be really interesting to know whether there have been fewer EBV-associated cases during the pandemic. Transmission among young people often occurs in and around secondary and tertiary education settings, and this may have been reduced by closures and social distancing. It would be good...

The above snippet is from @Simon M's participation bias thread, but it isn't really the right one for this. I'm thinking about enabling participation for patients who're severely affected or in a flare during the sample collection phase, but are living without much/any support. Some may really...

I suspect a lot of my middle aged friends wish they did! If eating one chocolate bar or a portion of pudding resulted in painfully swollen glands, hurty muscles, and a hangover, it'd be a lot easier to resist. As it is, it just tends to make them feel tired and gradually gain weight. I...

Just to help my poor non-maths brain, are we talking about two different things? DecodeME is looking for genetic factors associated with ME, but the Norwegian study is looking at a specific aspect of the epidemiology (as in, the population and temporal distribution) of ME/ME onset? I can...

I definitely only developed it when I got ME, and the same goes for some other folk I know. It reliably triggers PEM, and it isn't the result of a dietary excess or underlying diabetes. A slice of cake can be enough. In common with activity, it depends how my ME is generally. If I'm having a...

To be fair, if you happen to be one of those who reacts to it, it does quickly become obvious that it's caused by refined sugar. I found, right from the outset, that it triggers nearly as much PEM as exercise, complete with swollen glands and the whole caboodle. Repeated consumption of high GI...

Mine was 'nitwit'. Presumably means that, linguistically, I'm still seven years old?

I also seem to be a responder (I got little or no PEM when taking it), but the problem here in the UK is that people wouldn't get any monitoring via an NHS doctor. I think this is important when taking medication, which is why I haven't done a longer trial of DCA. It partly depends on the...

We'd probably be best starting from the first occurrence of recognisable ME, wouldn't we? It is thought to have a relapsing/remitting pattern in some people, and presumably those of us who've had lengthy remissions but then developed symptoms again still had the underlying vulnerability. As...

Hopefully that will go well. I can't see them doing it by video, really! I'll probably struggle too if prescribed, as I have severe psoriatic arthritis in my hands and numerous joints are completely fused. But I'll cross that bridge later; to begin with I'm hoping just to get a diagnosis, so...

Mine was similarly complicated, covering a period of several years. My family noticed that my stamina wasn't the same after measles, but I'm fairly sure I didn't have diagnosable ME then; even the onset of a clear ME pattern after exposure to EBV took several months. But if we take it from the...

Well, 30 years after starting to accumulate the painful lipomas that my grandmother and aunt had, and 10 years after developing painful fat on my legs, I finally decided to broach it with a doctor yesterday. Mainly because I need some proper compression garments to help me sleep, rather than...

It would be easy enough to do a members' poll on best-guess-at-year-of-onset, wouldn't it? Even if the software wouldn't allow a list of 50+ options, we could start by sorting people into decades. A simple sudden vs gradual onset option might also be useful, as well as an indication of whether...

It really isn't. Advertising stopped propping up newspapers a long time ago; even when I worked in the industry years ago, it was only usually a subsidiary income stream for titles with a cover price. A good chunk of the Guardian's funding still comes from the historic trust, but they've also...