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Well-spotted, @MerryB, it does look like an interesting example. Their criteria might be much broader than ours would be, but we could probably learn from their experience of recruiting GP practices. The study title, though...you just know King's College is involved without even looking! :rofl:

Yup – following an epidemic of 'tongue-shaming' on Instagram! :wtf:

So to shift the conversation away from the slightly depressing topic of the SMC, here's an idea. I've been thinking about the importance of visual impact in helping to publicise new projects. It sounds as if recruitment of interested patients is standing at around the 5,000 mark, which is great...

For me it happens around 36 hours after I've exceeded my energy envelope – but yes, it is 'flu symptoms. For me, the pattern's been pretty stable since I became ill in 1976, though of course I didn't know what it was before I was diagnosed. I just thought I got a lot of viruses!

:laugh::laugh::laugh: Me too! Used to have four of 'em, and they were very variable (at least in the amount of draught they created).

I'd spotted that, too – sounds intriguing, so I've set it to record.

Very interesting and informative ramble, though! :)

Sorry, I'd forgotten all about that! Not having a great day today.

Does everyone get immune symptoms with PEM? I've always had this, but I don't know whether it's universal. If I've only exceeded my energy envelope by a bit, it's nothing more than slightly raised neck glands on waking, which go down again within half an hour. Once you recognise it – rather...

:banghead::banghead: That's 30 seconds of my life I won't get back! :laugh:

I do see your point, but if this phenomenon exists, won't it need to be picked out of the GWAS statistically rather than from participants' symptoms? If there aren't any visible differences at all between ME patients and controls, there's no point proceeding any further with GWAS research...

Indeed, and we're seeing the consequences in appallingly sharp relief. Decades on, so many people still think vaccines cause autism – how many children have died, or suffered life-changing damage from encephalitis, because they weren't vaccinated against measles?

I've wondered about that, too, but it doesn't always cause symptoms – apparently some elite endurance athletes have it too. I suppose it might have more effect in combination with another variant somewhere else?

I wouldn't have been on the suspected cancer pathway, then, as I didn't meet any of those guidelines and I waited a good couple of months for the lower endoscopy the first time around. I can't recall the second quite as clearly, but I'm pretty sure it wasn't within a fortnight (I'd have been...

I was referred twice in two and a half years without this. It's definitely worth going to your doctor and, as @adambeyoncelowe says, focus only on the bowel issue. If you haven't had it before as a symptom of ME, it probably isn't. I really struggled with it for more than four years, but my...

I'm not familiar with it, but there's a list of his studies here in case anyone recognises the title: https://me-pedia.org/wiki/Research_studies_of_Leonard_Jason

Especially since the immune component seems to be oddly specific for many of us, usually presenting as pharyngitis. I have it today after swimming a bit too far yesterday. My throat glands are twice their normal size and feel very hard, but none of the other lymph glands appear to be affected...

:laugh::laugh::laugh:

It'd be great if these findings can be replicated with a larger group and in more than one lab. I imagine that interpreting the T-cell perturbations will be complex work and subject to a lot of debate, but if the specific 'ME profile' held up in even 60% of patients, it would be a big step forward.

Interesting – the short-term and long-term symptoms ring true for me (albeit with some additions to the short term list, e.g. swollen glands and constant trips to the toilet), but I'd only get the immediate symptoms if I'd really, really overdone it. If I've only done enough activity to cause...