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The NHS have delegated Long Covid services to the ICBs and they are ending up being closed. One of the reasons is apparent lack of demand. But it seems that diagnosis is half the problem now. Interesting about the incentive to diagnose and code Long Covid @Haveyoutriedyoga I didn't know that...

Thank you, that's really informative. It sounds like a consultant and nurse based on an outpatient and inpatient services sounds like a sensible first step. Could a pilot scheme be set up somewhere? My mum has Parkinson's and I marvel at the care she has. It's based on a consultant, nurse set...

Yes, it is definitely problem with Labour just picking up the Conservative baton of getting people back to work regardless & benefit bashing. They didn't present a different narrative even in opposition so it was unlikely they'd change. It does make sense for them to go to Streeting but my...

It would be good to know more about this as it's just a general statement in the Times. Who rejected it? What was the proposal? Was it just a response to The Times? With the #ThereForME campaign is going to Streeting the best pathway? It's so unlikely he'll follow this up. There was Javid who...

Here's his comment on Twitter

I think Murdoch has been misquoted in the press about trainspotting. It was on twitter. It was a reference to how some people with ME might think his book is a bit lite and like watching trainspotting after reading the book. Not that it's like trainspotting, he said it was a bad metaphor. The...

It's a difficult one as people need some kind of hook to bypass the whole 'fatigue' 'tiredness' issue, this why Binita's explanation worked. It might of been better talking in a more general way about mitochondrial dysfunction or problems with the energy production system. Instead of linking it...

The issue Kane brings to the table is that whilst she is approachable and doing alot to bring another medical voice to the public debate is that with her treatment of triple therapy for kids it naturally brings her position into the controversial and possible fringe science before the actual...

With Labour looking to push through assisted dying and benefits being hit on again its likely we'll need something like that here in the UK before long.

Also had this. Think it might be linked to neurotransmitters esp dopamine as it stays under control if I keep dopamine levels from fading to fast.

It's look a good campaign. Only concerns is that its alot for a small relatively new group to shoulder all at once, with alot of illness burden. They are essentially trying to be the coordinating force of alot of well established charities. Cooperation and coordination is needed, and...

So Long Covid Support have opened up a research involvement consultancy. It's details can be seen in the link. But they've quoted psychiatrist Dr Tim Nicholson in some of their images. This seems a bit confusing as he's basically an FND specialist, part of FND hope. He's a key player at Kings...

It does both her and Chalder were very quick to see the 'gap in the market' when long covid came in esp in kids. You'd hope LCK would know something about it? it's good practice to know the researchers history when engaging with them. Or are they going down the route Action for Me went in not...

The Community Note twitter put on was helpful - is there an action where people on s4me and are on twitter can set up community note access? This can then be coordinated as a response

Was there an attempt to see if people could donate there bodies to medical science with ME in the UK?

Wow what a good idea. There's more beach access coming too with the adapted beach rollers

Interesting read Any idea why Long Covid Kids aren't saying much about this? A friend is on the Long Covid Kids group & said they were recruiting & helping the clock study doing the PPI. Quite a few parents weren't happy that their kids were being signed up and having to answer the...