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That's right. There is no accountability that I can tell. Long covid patients are also not being protected from anything people want to do to them. Edit: a proportion of them (with PEM, 6 months+) are also not being told that they likely have ME/CFS and believe it's a different condition so...

Am I given to understand that as it's a "living guideline" of some kind and being done in a different way to other guidelines, it will never be "published"?

I feel the same. Unfortunately I have not really been able to get anyone to care about this except my parents.

I am also in isolation although I am now too sick to go out after getting covid last year. I am not yet vaccinated for various reasons including that I feel safer at home than going anywhere at the moment*. It also wouldn't change what I am able to do day-to-day - as you say, I'd still remain in...

I saw this today - another "pause" - if only we understood what this meant in British Medical Establishment English!

Does anyone know if the Autistic Society have said anything since the terrible statement they put out? (I seem to recall this happening)

Thank-you :heart:

Can someone explain what happened/why? I am sorry I am not familiar with this incident I would appreciate it

I think we are a meal ticket. Or the meal.

I just put out another tweet about the change.org petition and emailed my family to sign. I don't know if the petition will achieve anything, but it seems better than nothing. I don't know about the Myhill petition. The 2007 guidelines should be withdrawn but she is the wrong messenger.

Post copied from Petition: #MEAction: Publish the NICE ME/CFS Guideline Now I just put out another tweet about the change.org petition and emailed my family to sign. I don't know if the petition will achieve anything, but it seems better than nothing. I don't know about the Myhill petition...

Why is Cochrane funded by NIHR?

Why would NICE want to do this??

I am not saying it's this, but something similar happened to me when I got covid although I didn't realize it at the time until I got more symptoms. My heels (and skin on my hands) cracked open and I thought it may be something to do with neuropathy and ignored it. I tried to clear the dry skin...

I would have more sympathy with this if not for the blatant conflicts of interests involved. It's fairly obvious people are going to defend their own research and activities.

Thank-you xx

FWIW I didn't make any (at approx 8 weeks; I got an antibody test as soon as available) but I was lucky in that my doctor soon realized that didn't mean I hadn't had covid. Unfortunately he's had to retire now and there are still somehow people who do not understand that we did not have PCR...

On the substance and content of the "debate" I agree, but I think the framing device of a "debate" is being used in bad faith by e.g. the BMJ and in a similar rhetorical style to the framing of climate change as a "debate". It is simply a method of creating room to manoeuvre and an unclarity...

I think this is psychological abuse. I understand why we don't talk about abuse more as people think it's over the top etc and so we can't talk about it, but it's abuse nonetheless.

May be for the best given some of the usual comments :(