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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...

These regular studies on nothing produce stress in me that’s becoming chronic, due to the frequency of them being published.

I feel like we need a “rage” scale as to how enraging the “average” forum member is likely to become from reading any given paper. Whatever the top rating is, this qualifies.

I think we need to recognise that, and also that we likely cannot dominate a disease. For most people even if they exist “perfectly” in accordance with the smartwatch stats etc they will still sometimes be unwell from external factors like weather/hormonal changes/sadness/unknown factors. This...

Maybe it’s so quiet because they cured everyone.

Yup, it’s my new favourite silver bullet. If the BPS strategies are so brilliant, where’s the follow up? It’s been decades.

HMS PACE is lying just next to the Titanic. Just because a few passengers made it into lifeboats and set foot in America, doesn’t mean it was a successful journey.

I know this. I’m looking at beating them at their own “research” game. If they want to pretend that baselines and pacing up are valid, why are there no published studies tracking over 5 years?