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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

It’s an advert for a private alternative therapy provider then.I was wondering how cranial sacral was being provided through an nhs service. in fact there are no NHS services for MECFS in Staffordshire

Service evaluation or study? very small numbers High percentage opted out Insignificant

Yeah probably if I was writing something formal that’s what it would be but their is what came out of my brain

Brilliant @Trish feel like you’re channelling Graham with your combo of poetry and his bete noire dodgy questionnaires :hug:

Brazen disregard, would be very interesting to hear what the HRA have to say about this failure to comply with their report given they had obviously gone out of their way to make the minimum possible findings to limit the impact on Crawley.

As it is a Swiss team quite likely they don’t have English as their first language and the term chronification arises from translation from another language.

That’s good news.

And just to point out these are not uk based ‘researchers’