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Tessa Munt MP on Channel 4 news making a strong point about the inadequacy of the Delivery Plan & that we need real action now from Wes Streeting and Ashley Dalton.

Thanks for this - I've just got round to signing up.

I've just stopped using it* too, for pretty much the same reasons (and I disliked how it kept pushing a certain interpretation of HRV and 'coherent breathing' that wasn't supported by its own results). I did find it useful initially for symptom tracking and showing me how much exertion was...

Ironically, the level of general ignorance and hostility towards pwME and pwLC in the NHS in general will make the specialist services look better in contrast. The bare minimum feels like generosity when elsewhere you've only been met with a kick and a spit.

Hilda Bastian has posted this: https://mastodon.online/@hildabast/114914005296356347

Hear, hear.

In the Delivery Plan under the header 'Stimulating further research into ME/CFS' Do we know anything about when this is happening & who's involved?

Not even the worst thing about that, but "MS/CFS"?? FFS.

It would be interesting to know how they were selected.

I've just found out that a friend of a friend is part of this group at Cambridge, so I'll ask the friend in the middle to forward the link to JE's Qeios paper.

Edited to add: maybe it's the other way round from their hypothesis. Maybe athletes with Long Covid are more likely to be able to still compete if they do a throwing or jumping discipline involving brief bursts of effort with rests in between, while those in endurance disciplines are less likely...

Covid isn't just over, it never existed.

Good to see they acknowledge the limitation that their cohort didn't include any severely affected patients.

To a lay person, this all sounds a bit circular?

I can't see anything in the quoted sections which makes that clear - though I could well have missed something. I can see repeated suggestions of referral for CBT to "improve function" and suchlike, which would give any uninformed person (or overworked GP skimming through the text in 30 seconds)...

Protests by patient groups aren't going to change the minds of people who write this stuff, because it just feeds their perception that the patients' negative attitude is the underlying cause of their problems. We desperately need informed medical professionals to speak up.

How did they identify PEM?

It'll be great if it's true, but seeing it breathlessly marketed on Twitter on the basis of "a couple of weeks" use doesn't give me a sense of enormous integrity.

Yes, same. I go through boxes and boxes of tissues. Including having to put tissues under my face when I sleep otherwise I wake up with a wet pillow.