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Merged thread https://www.statnews.com/2018/10/16/polio-like-paralysis-cases-increase/

Shouldn’t we also be stressing non-healthy controls who don’t have ME, to see if the response is unique to those with ME or simply a response that is found in other illnesses too?

Reuters has a big reach, so I’d expect it’ll be syndicated all over the place. I do often wonder what a ‘normal’ person thinks when they read an article like that. My impression is actually more optimistic than I’d expect, but it’s difficult to tell when you have your head buried in all these...

If you think those supplements are junk, you may wish to discuss with two of the doctors in the UK who see / treat ME patients, Dr Weir and Dr Bansal, as I believe both have recommended such supplements to patients. My opinion is neither here nor there and I don’t take any of these things, but...

Er, that’s not what I was saying at all, nor was my post addressing you directly in the slightest.

I think @adambeyoncelowe has explained how people face multiple forms of discrimination best, but I guess all I’d say is that when someone writes an article about how poorly women are treated, it is NOT invalidating your experience as a male pwme and saying you have an easy ride or do not face...

N = 1, I was given antibiotics for a mycoplasma infection, it had no bearing on my state of health, if anything I got worse after the course. Edit: mainly sharing this because I think it shows how nebulous this sort of thing is. Maybe someone could have a lot of their symptoms explained by...

Something has clearly happened in the UK to prompt them both doing this. UK parliament? NICE guideline stuff? I did think that as the NICE guidelines started the consultation process that we’d see jockeying for position among third parties who catered to ME/CFS.

Just uploaded 8 minutes ago. I generally shy away from personal insults but he’s just so irritatingly smug while he peddles this anti-science bollocks, isn’t he.

If I was an outside observer, and one was to hear that ME patients had been causing trouble and been abusive to researchers, and scrolled through a few online groups and tweets, there would be a lot of good but also a lot supporting that kind of allegation. One does not have to be healthy in...

ME advocacy already has serious problems with how it’s perceived outside the community. I’m not sure drawing up a list of health professionals is the best way to go about improving that perception.

+1 for probiotics making me worse and triggering mast cell symptoms. What a joy to report back to the doctor I saw who said they were “essential” :nailbiting:

No.

One of those really irritating lines where a layperson would see "well of course psychological and social factors affect the outcome". Someone with an illness with a very tumultuous home life or say, something like ptsd in addition to their illness is definitely going to have a much harder time...

Thought I’d paste the letter here for those who don’t want to / are unable to click through to Twitter:

Not in today’s selection of letters: https://www.thetimes.co.uk/edition/comment/tory-fear-of-infiltration-by-ukip-members-2kcmc6nlq

Yes - I was just saying that it seems wrong to say that ME patients are not deconditioned and likely suffering the adverse effects of that, in addition to the symptoms of ME.

Can we really say that deconditioning isn’t common in ME? Anyone who is bedbound will have all the negative effects of deconditioning, and it’s likely that most people with ME who are anything except mild are incredibly unfit and sedentary. Deconditioning has nothing to do with why I’m sick...

Really interesting piece from Science magazine. Very much worth your time to read. Basically, a researcher made up whole trials, his co-authors put their names on his papers without checking anything, peer review failed to spot numerous problems with the studies, journals failed to react to...

I agree. I appreciate that I’m in the minority here of having broadly enjoyed the series while recognising that it also have some serious problems. But I do think that tweeting every single person who’s watched it and tweeted about it is counter productive. If someone had an audience, we should...