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Please don't suggest that it's just a placebo effect. Placebo effect can't transform somebody's life like that. Frankly it feels insulting to the patients to suggest that as it implies that they were imagining the whole thing.

Does it have to be an immunological-like reaction to exercise in order to qualify as PEM (and consequently as ME)? I don't think I've ever had immune symptoms in response to exercise...

OK... but these people who are diagnosed with CCI, and have improved health after CCI surgery... is it not the logical conclusion that they were probably correctly diagnosed with CCI? OK so they don't meet what you consider to be the standard for CCI - so let's say maybe they have "XYZ" instead...

I feel the need here to quote Karen from another thread:

I don't know where you are getting that idea from Jonathan - there are plenty of accounts of people diagnosed with CCI experiencing huge improvements in their health after surgery. Jen Brea, Jeff Wood(s?), Melanie Hartshorn, Karen Scott, Mattie (don't know surname )... and others. Clearly, CCI...

Patients with EDS plus CCI have been going to Spain for surgery for a while (long before this whole thing with people talking about CCI and ME/CFS started). Look at the story of Melanie Hartshorn for example (you can find by googling). It's not done in the UK on the NHS because surgeons don't...

Thyroid

Agreed.

It's a minority of people but I have seen a few people on Twitter and Facebook putting Jen down. Saying things like she was making it up all along, she's a hypochondriac who likes collecting diagnoses... I have seen some really nasty stuff.

Okay, but you were responding to Tilly's post where she was giving her opinion of "behaviour on Twitter".

There are definitely instances of people putting JB down, but you may not have seen them depending on who you follow on twitter!

But some PWME sleep lots.

Why?

:emoji_duck::emoji_duck:

I have seen some people expressing concerns on Twitter that the December date of the election, considering the usual strain on the postal service around this time of year, may result in postal votes not arriving to be counted in time. So, it may be better to apply for a proxy vote.

I'm just desperately praying that Carol Monaghan will get re elected

It was me who asked Trish to make a thread for this - due to myself being too brain fogged to work out how to title the thread etc. I came across Cort's article today and it made me rather uncomfortable. Felt a bit too close to the gaslighting sort of "pain isn't bad, it's just how you respond...

Nope. GAME is already in use by "Global advocates for myalgic encephalomyelitis" - Guido den Broeder's group.

Thanks, can you expand on that please?

Do these findings make it more likely that an enterovirus may be involved in ME too?