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@trudeschei

I would like to see Forward ME pressing for this

Would like to see this on the home page of every ME charity

That image vibe is post coital rather than post viral

Well maybe that’s the difference @Rosie as I have moderate/mild ME so have some ok days and can go out only in crash/flare up I spend most of my time in bed

Agree. To me PEM is from “normal overexertion” a crash/flare up is longer lasting and much worse symptoms than usual.

It’s not like familiar faces is even a more positive term. Just watch any fly on the wall programme about the police.

@dave30th in case you’ve not seen this

BBC web article Birmingham City University and Burton Albion Football Club have teamed up ‘to help 12 people with long Covid regain their health and fitness’ sports science :banghead: https://www.bbc.co.uk/news/uk-england-stoke-staffordshire-62822416

I think there’s a small subset who are writing books or doing “training courses” and charging.

I struggle with twitter threads of a handful of posts. Anything that long isn’t a viable means of getting any message over to me.

I seriously doubt consultants have time to go on Reddit

https://forward-me.co.uk/july-13th-2022/ I noticed this meeting note refers under NICE guidelines heading, first bullet to Service Specification and says Christine Harrison was picking that up. Does anyone know what that is? It sounds like someone is putting together a document of a model...

Maybe those with LC weren’t well enough to be seen in person but found it easier to participate, possibly at their own pace, online. Perhaps there’s a time factor with people taking considerable time to understand that they aren’t getting well and have LC especially if they have had...

We have threads on a range of such topics in the living with ME area of the forum https://www.s4me.info/forums/living-with-me-cfs-discussions.75/

Therapeutic programmes should be designed to minimise gaslighting

I’m certain based on the Nice consultation that there’s significant stonewalling going on (not by Hilda) by people with some influence within Cochrane. This seems to be a classic example of the tactic to avoid change of an issue being kicked into the long grass. And now nothing has happened for...

Not my call obviously and apologies if this is already in hand but it strikes me that Forward ME could probably benefit from you briefing them about how you’re doing that @Suffolkres

Maybe the time when contracting is reorganising is actually an opportunity as the status quo is no longer fixed. Certainly any focus on a new/replacement care pathway for MECFS should prioritise care for severe/very severely affected PWME. Commissioners should be encouraged to understand this.

Yeah very snide turn of phrase