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So did she actually have hypothyroidism or Hashimotos etc rather than ME/CFS? I get my thyroid hormones checked in my annual bloods, last year for the first time they became borderline.

I mean alongside Cancer, HIV and MS so we are automatically covered once diagnosed. Those were added purposely to reduce discrimination.

I want us putting in the Equalities Act, like they had to put MS in

Journalists, especially on UK tv are all trotting out the “it is real people, used to think it wasn’t but we know that was wrong” line. In the court of public opinion, it’s real, it’s not made up or “all in the mind”. The fight with medics and scientists is a different matter, but that isn’t...

From a comms and PR point of view, I think Chris did the right thing - he used the interview to talk about his study, which is what he was there to do. Silly questions, ignore them. He’s not there to dance to someone else’s tune.

Ok. The whole thing is just a big “go away” though, isn’t it. Manage yourself. Don’t bother the medical staff with this.

It’s a side issue but I feel like the “wellness industry” has hijacked “inflammation” recently. Lay people keep mentioning to me about reducing inflammation in the body, or ME being “inflammation” and I don’t think they’re referencing the activity of Cytokines or T or B cells or immune response...

Thanks Trish. So they both reference “you may have been intubated in hospital” and that C19 can cause sore throat, laryngitis etc don't strain to talk and keep hydrated In conclusion, nothing more exciting than “what to do if you lose your voice/have laryngitis” and there’s no advice on what...

I created it -by pasting the link to the paywalled version in the box on the archive.ph homepage

Nonnpaywall https://archive.ph/wv7rQ

1-10 points, like our scale will when the MEA have finished adding to it. Are you moderate-moderate or Moderate-severe? Or mildly moderate severe?

Meh the average Joe will absorb the headline, the headline implies ME can be seen in blood samples. Job done. 95% of people dont care about Carson whoever he is.

A candidate for a @ME/CFS Skeptic deep dive hopefully?

My constant complaint -since Invisble Women was written- is that I’m very short. I’m so short that I’m within an inch of being a little person’s height. My experience of the world is actually really different to “average height” people. I can’t just reach/sit the same way, if I want to sit...

I don’t know but I don’t think getting an NHS ME diagnosis is the biggest problem in all this for pwME. A GP can diagnose it, it’s really going to affect anyone who had to go private for ADHD or Autism diagnosis (women, mostly). For people with ME who have a diagnosis, are we going to be...

In theory, I don’t see why not. I didn’t even attend one NHS clinic in person - it was just online, blood tests etc arranged by Gp taken by community phlebotomist.

I think, in fairness, you can get an NHS diagnosis of ME if you’re severe, just not any treatment. I was borderline whether I’d be “moderate enough” to be offered any or sent to deal with the community services. Will we get signed off as “no possible recovery or improvement in function” I doubt it.

People who claim they have difficulty getting out of a chair are also claiming they can’t walk a meter even aided. So, by walking in more than an metre unaided, they have already blown it. Except they are supposed to be able to do it repeatedly, as required, without pain and in a reasonable...

Well the women in the church is Salem all said they felt cold, didn’t they.

The MEA didn’t want to get involved, no?