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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.

The petition is open to all to sign don’t need to be in USA

That’s a great idea @Kitty

Yes indeed and this is a factor in delaying diagnosis for gradual onset. Was the repeat laryngitis I suffered from quite badly for a few years actually repeat ME flares…. I honestly don’t know

I don’t think NICE funds anything does it, up to NHS to pick up the baton on implementation once the guidelines are published. Which is to some extent why we are in the current situation so we would want to see England Wales Scotland equivalents of the NI HSC who are hosting this education...

This seems quite important - what will be the consequences for PWME in Germany?

It is indeed a breakthrough and a model for what should be happening U.K. wide i hope it will be highlighted at the NICE round table

I meant the guy in the now withdrawn proposal video ah yes sorry i didn’t see @Hutan post - Patrick Hill

Great work by those including @Brian Hughes who challenged this BS. Amazing the proposers thought they didn’t have to bother following the rules. By the way who is that guy in the video?

Very binary thinking eg I have only ever used a wheelchair twice for airport assistance. it was very helpful and I was at the same time very grateful that I was able to get the plane because of it, experiencing a whole new reality of myself as a disabled person and stressed out by the...