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Trying to do as much as possible at the person’s home - the work the Biobank and Physios for ME doing sets an example

Maybe it will get another boost in signatures

‘Focus on health promoting micro changes instead of symptoms’ my backside :wtf::wtf::wtf::wtf:

I think people with ME who may have had some elements of supportive care from individuals within the current structure make that known. The charities also have contact with NHS people and see them as doing their best. Shuffling deckchairs will not get us to a functioning service for PWME

Yes good point.

:rofl:

Good on them for coming up with the idea. As ever it’s easy to comment from the sidelines but I think it would be a lot more effective in communication if it focused on top priorities - MEAction call to action for MillionsMissing springs to mind - end to GET - end to FII cases against families...

I agree the handling of someone’s post about their negative experience by reposting someone’s positive experience is an extremely poor approach in terms of how to deal with any type negative feedback. Almost a textbook example of how not to do it. And given the content of the experiences...

Presumably by the trustees

I think brain fog is like fatigue a general term that is open to broad interpretation.

I bet the model assumes any swag gets hidden in a shopping bag :whistle:

Again White spending time ‘retired from CFS research’ that could have been better spent sorting out release of the full anonymised PACE data.

Sloppy work there by the drafter and reviewers clearly at least one word missing at the start of the second sentence.

CFS in person ‘course’ I did was 9.30 to 12.30 :banghead:

I have hypertension and i get Orthostatic intolerance as well. if we had regular reviews in the U.K. for people with ME i would have raised this before now. As things stand I’m hesitant to go to GP with it as I’m fairly sure i will get nowhere.

I got some FFP2 from Lloyds pharmacy online.

Translationese.

Well done :thumbup:

I generally struggle more with overheating in PEM especially at night. But I did notice that during the recent refurb work when I was, unusually for me, needing to rest or even sleep in the afternoon because I had got up so much earlier than normal I was getting chilly then.

As the paper is 2012 has it been implemented? Or is it being proposed in which case you’d think they would take a look at what has happened in the last decade first.