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So I can’t comment on most aspects as I’m in the UK. I think age/sex aren’t particularly useful criteria one of the useless General Practitioners I saw when trying to get a diagnosis was young and female. It’s more about the individual. If there’s a group for PWME on Facebook or social media...

I’m guessing you’re in USA? Which I think is useful for commenters to know as things vary so much between countries.

Chantal Britt is from Long Covid Switzerland who recently became signatories to the Cochrane open letter

FUNCAP is Not difficult to fill in it is being used by thousands of people in visible through the app monthly. The view of one person is not a valid basis for ruling something out for potential use in the NHS, inappropriate. A lot of people with ME rely on technology more than the average...

:emoji_dart: Karen Hargrave

:rofl: Was thinking the same

Really good idea :thumbup:

Good to hear from you @IanMcPhee sorry to hear your mum’s not too good hope things improve

Normal good practice chairing of any meeting especially larger groups where people are remote would be to explain when questions will be taken, how to indicate you have a question or a point to make, whether the meeting discussion should be kept to those attending or if it’s ok to tell others...

Woah that is ridiculous. Are they deliberately trying to upset people so that they get cross on the call. These people are so patronising rare cases where you disagree- what is that saying. It’s supposed to be soliciting feedback which normally wouldn’t involve everyone having the same...

Yes what PPI was there at the initial stage of scoping out the project, the assumption appears to have been for a bunch of questionnaires from the start rather than designing a product suited to PWME

I don’t see why malaise couldn’t be understood in the same way in English, probably because I knew the French I’ve never felt it to be downplaying. English equivalent something like having a nasty turn

Maybe they will finally start getting better checklists

In my opinion Cort always puts a positive gloss on everything he writes about.

Is that a quote or your comment @Yann04

Yes Adrian some of us have flagged up that use of trackers should be considered and there are symptom tracking apps like visible (which already incorporates the Norwegian FUNCAP questionnaire as a monthly review) unfortunately these comments have fallen on deaf ears and 20th century models are...

Yep frequent viral illness frequent laryngitis (tonsils had been removed age 6) increasing problems with sleep, some years worse than others, about 8-10 years before eventually diagnosed CFS (did have a minor depression diagnosis which general ill health was attributed to by me and everyone else)

Orthostatic intolerance isn’t just hypotension. It can be hypertension.

Does anyone know if Jon & John have actually seen any of the posts?

Yes I get cognitive freeze situation sometimes fleeting mid sentence or a few minutes if particularly overloaded. I would categorise that as cognitive Fatiguability rather than PEM which for me is flu like aches and drained feeling, croaking voice - swollen glands sore throat only materialise...