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Does anyone remember 2-3 years ago, the MEA went through a phase of spotting this type of job ad/person spec and writing to the Trust about it? It happened a few times in what seemed like quick succession. I think most of the time the response was that the lead clinician would have to fill...

He’s always been a speed demon. Allergic to speed limits.

Thanks @Hutan for acting so quickly. With the Sennyd having ME/CFS debate, and the plans to make an NHS service for ME in Wales and talk of wanting a centre in Wales, this is really worrying that Psych’s are getting in early and it will be another disaster for pwME.

An interesting situation, has he publicly disclosed at all? Otherwise it’s pretty low to report it far and wide from a disclosure made to very low level court (presume the public gallery was listening).

Begging for crumbs

I want to meme this

Poor Betsi, this isn’t a good way to commemorate her. I thought it interesting that the ME service came about from the LC service, indicating that there were no ME services prior to the pandemic? I don’t think there were as I looked into moving to N Wales and there were none. Also there’s no...

Listen these people think it’s that type of “inflammation” that you can cure with stretching and lo carb whole foods…you know, the socially constructed inflammation

I wish we could laugh-react! Surely it was Siona Fymington, it being R4.

This is great! As “not a scientist” I’ve reduced this down to “it’s not inflammation” for the “not a scientist yet feel qualified to opine on my illness” people in my life.

A lot of people can’t listen to music, there’s a risk of harm.

It’s so true, many of us want to be diagnosed with a “real” illness, in the sense that if our problems were just caused by MS or cancer or MND then we’d have the respect and care of medics and possibly some treatments, or even an idea of disease progression. We’d be “good disabled” I.e. it’s not...

Can we stop referring to it in medical terms? “ME is a mysterious, intriguing phenomenon, too complex for even cutting edge medics to begin to understand, much less comprehend”

I don’t think the rating of “minor” or “significant” works in the way we assume.

Interesting. I know someone who had this recently on NHS for depression. It made not a jot of difference. She said she actually felt bad as the consultant was so enthusiastic and enthralled with this new treatment and she’s kind of burst his bubble as it didn’t help her. It does seem to be the...

Yeah, it’s not up there with exercise therapy, but it’s on the same list I’d say. Big list marked “danger- high risk”.

He’s brave going to South America, I hope his health holds enough for him to enjoy it. I went to the Caribbean during some years of remission, it’s good to do it when you get the chance.

Also that sensitivity to sound and music is widely reported as problematic by pwME, it’s ethically problematic. And some of us cant speak much.

Oh yes thanks! I should have linked. Cheers Nellie

Hi Garrick did you read through the other thread you posted? A lot of us contributed. I notice you have said you want to speak to people who have “Chronic Fatigue Syndrome” which isn’t a term which is currently used, in fact it is considered quite offensive, as it deliberately replaced Myalgic...