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disagree it was a waste of time that Minister now has ME/CFS guidelines embedded as an issue in his memory due to the mauling he got from the Baronesses

I’d like to big up these Baronesses for standing up. Unlike previous experiences in the Lords when Wessely got his mates to speak against us. ETA just watched it on BBC iplayer so it’s available if anyone missed it

I would hope that if the minister has anything about him he will understand how poor his briefing and line to take has been and will be kicking ass back in the department

Excellent intervention from Baroness Finlay of Glandaff. ETA that will be causing some thought in the relevant Department of Health policy team and whoever in NHS is responsible for liaison with them. if they are doing their job properly they will be researching what her issue about reporting...

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.