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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?

- mangles well known saying “correlation is not causation” - immediately ascribes correlation as causation immediately after stating it

“Pacing up” is unevidenced “Increasing your baseline” is unevidenced Anyone recommending this needs to provide evidence that it’s proven to help, or stop recommending it. The community needs to shout this louder.

I think at this point we don’t need it. We know the initial research is junk but that doesn’t matter, because it’s so stale it’s out of date altogether and can be wholesale dismissed.

In the comments the poster confirms this treatment is at Bath…

There’s never been a long range study across 2+ years, certainly not 5+ or 10+. Yet this is an illness which people very rarely recover from. So they can go about in circles pretending PACE showed GET is helpful but, if that was even true (which it isn’t) that’s only in the short term...

The word I keep thinking of is “modulate” not sure why. Maybe I mean moderate. All pacing does is try and reduce the extremes of crashing/recovering/overdoing. It doesn’t erase them, just makes them a bit less. Medics and society seem stuck on a “quid pro quo” cause and effect thing - overdo it...

“End up using the next days energy too” oh my days. I can’t even. In my previous job I encountered obviously neurodivergent people in their 50s who were never diagnosed. If they were at school today, they absolutely would be. I always tried to quietly accommodate their differences to support...

It’s basically gossiping,

I don’t see it as a problem with “holistic” I see it as another iteration of the ultimate problem. Which is something like -victim blaming/your illness makes me uncomfortable/failure to improve is your fault/choice- moralising and blame. Sick people are always not sick enough; unless they’re...

I do think I’ve had narcoleptic incidents, but they feel very distinct from MECFS. I don’t know if you can have intermittent narcolepsy. The cataplexy ones some are after laughing, they seem different than the ones where you’re too fatigued to move to say, get off a bus. My tounge is a separate...