“We didn’t even see his eyes for over a year.”
“It was like dealing with someone almost in a coma.”

Clip from Channel 4 News: Nick Benton (@nickbenton.bsky.social ) and his family on life with severe #MECFS — as the government finally releases its delivery plan.

In particular, I would like to know whether the authors support encouraging patients to maintain or increase their activity through flare-ups. If so, based on my own negative experience and that of many others I've heard from, I think it risks harm. #MECFS

the Leeds facility (which costs £3.5k per patient, per week) isn’t nearly detailed enough given the harm done through some implementations of GET/generalised exercise programmes and the resulting lack of trust between patients and clinicians.

I lost count long ago of how many I’ve come across. It seems risky, not to mention very dismissive of patients' experiences, to promote it in this way. Talking vaguely of ‘bespoke’ programmes overseen by ‘experts’ (of which there are currently very few) and

🧵I find it concerning that the authors of the recent BMJ piece on treating severe ME/CFS w/ increased activity avoid mentioning the number of patients who have reported worsening through inappropriate exercise advice or explaining how they propose to prevent this in future.

Thanks Karen 😊

Thanks Carole 🙂

Stuck at the bottom of a well Me, very severe ME and the NHS

Today's #ThereForME blog post is from @nickbenton.bsky.social, who has experienced some improvement from Very Severe ME.

He shares his various experiences with health care and talks about the need to be #ThereForME for those too sick to advocate for themselves.

www.thereforme.uk/p/stuck-at-t...

The Rest is Politics podcast posted a questions request earlier today and I asked for their take on the ME Delivery Plan not being funded. It would be great if anyone else who has the energy could ask too. This would give it a fighting chance of being included in the podcast! @thereforme.bsky.social

Hi @georgemonbiot.bsky.social, on 17 Feb minister for public health Ashley Dalton said there are no plans to grant additional funding to the cross-gov't ME/CFS Delivery Plan, due to be published next month.

Your support in encouraging them to reverse this decision would be greatly appreciated. 🙂

Thanks Binita! X

Dear @rthonwesstreeting.bsky.social & @ashleydaltonmp.bsky.social

My name is Nick and I have ME

I used to work, play football and take countryside walks. Now I cannot do any of those

The Delivery Plan for ME is an opportunity to invest in our future

Please #FundThePlan
@thereforme.bsky.social