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Yes, I've had spontaneous recoveries that occurred pretty much overnight in the early part of my illness. The first was after seven years, and there have been two others subsequently, but nothing like them in the last 25. For me, it was simply a case of waking up knowing that something major...

No – as far as I know, it's all anecdotal and people's own experience. For instance, I'm probably one of the lucky ones in having had good remissions as well as the relapses, but no evidence of gradual deterioration over the 45 years up to now (other than natural ageing). Other ME long haulers...

I struggled with this too. I didn't have the complications of things like occupational pensions and ill-health retirements – in many jobs you know from the outset that if you live alone it'll be benefits and the end of paying a mortgage – but the main problem was the way ESA works. I tried...

Google gave me these: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8163173/ https://www.tandfonline.com/doi/full/10.1586/14787210.2015.1081056 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5482345/ Obviously not sure whether they're what you're looking for? I recommend Prof Vaughan Keeley as...

My brain is tired after a too-busy day yesterday, so I might not be capable of logic. But it struck me, reading your post, that the only reason for outcomes being worse at 135 weeks than at 52 (assuming that there are no confounding factors such as other illnesses or injuries in the meantime)...

We're going after 'em with their own tactics now, so your hypothetical tweet will read I keep wondering if I have been duped into being overcritical by patients. And then I see the garbage produced by the activists defending GET. I stop wondering. (Sorry! :laugh:)

:eek: Certainly if it's in solid form... Even one gram (equal to a normal adult dose of 2 x paracetamol/acetaminophen tablets) is a lot to swallow!!

Absolutely bloody hilarious that he tweeted reactions that morning, before he'd even bothered to read it...

I suspect quite a lot of them see the purpose of medical research as being to keep them employed for as long as possible and remunerated as handsomely as possible. The people doing the proper science are probably on less secure contracts, lower pay, and put in a lot more unpaid overtime because...

Quite possibly my favourite piece yet. Though they're all so good it's difficult to choose! Thank you.

I wasn't expecting much either, but it was their sheer lack of knowledge or insight about ME, despite years of experience of treating patients, that surprised me.

I have complete faith in his ability to come up with something even more unhinged/unethical/etc, so I'm not too worried about him.

They make it sound as if someone's actually made some progress in 'managing' fatigue in other conditions, instead of it being one of the most intractable symptoms faced by patients with a whole list of illnesses. None of them are going to be happy if said 'management' consists mainly of attempts...

Including this one! :):)

:rofl:

This is why it's puzzling that they're making such energetic efforts to make themselves look stupid in public after the event! :laugh:

I suspect only if NICE gets so bored of life they decide to press the self-destruct button. There's real jeopardy and there's bleating. I only hear bleating so far, and from a very small number of people. If they had any substantial arguments, they'd have leveraged them when there was still...

If they can complain about prejudice when people point out flaws in their protocols and data, I definitely get to complain about racial discrimination because I'm ginger. :rofl:

They know now what it feels like to be the target of people whose arguments are so slippery it's like trying to nail jelly to a wall. :rolleyes:

Yep. I hadn't realised that inclusion of PEM as a required symptom was even an issue outside of small research studies with frustratingly loosely-defined cohorts, until all the bleating about NICE having made it up. There needs to be yet another (sigh) discussion about agreeing which case...