Pat H 💙

35 years of ME/CFS. Former Westcare volunteer worker. Still waiting for biomedical research and better times. 💙

[Anil van der Zee © @AnilvanderZee]

1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME.

It is one of the only places where the sickest patients can receive specialised care.

We need this everywhere!!

#pwme #myalgicE #millionsmissing #severeME

[davidtuller @davidtuller1]

An interview with Professor Chris Ponting, a geneticist at the University of Edinburgh, about the recently announced follow-up to DecodeME called Sequence ME & Long Covid: https://t.co/1YUPxKgSXx

[We 💚 Stoke Lodge 🍃💚🍃 @WlStoke_Lodge]

Thanks @darrenpjones for once again raising with @BristolCouncil the concerns of local residents about Cotham School’s latest CCTV application.
Invasion of privacy & the impact on heritage parkland & protected trees all remain key concerns. c260 objections & no stmts in support.

[Adam @ABrokenBattery]

Clip from a BBC News aired in 2007 when two #MEcfs patients launched a court case against NICE and the guideline recommending graded exercise therapy.

The judicial review was not successful.

https://t.co/OHHwjmpG9s

[Adam @ABrokenBattery]

“It made me much worse… Most people I know with ME have exactly the same experience with it.”

Annette Barclay, a patient with #MEcfs, describing her deterioration following Graded Exercise Therapy.

[Lizzy H @hopefullizzy]

Guess who went downstairs to the garden yesterday morning🥹😍😭

Mum and dad made it happen (as did the wheelchairs, stairlift, ramp, bed, and spending the rest of the day and today in the dark sleeping & resting).

It was bloody magical, I cannot explain how much it meant.

[Lizzy H @hopefullizzy]

Was it even Blue Sunday if I didn’t wear my staple blue tshirt 🤣 so weird to see the obvious changes.

[Adam @ABrokenBattery]

Simon McGrath has written a really good blog on the new government-funded DNA sequencing work for #MECFS.

Simon writes excellent, accessible blogs on #MECFS research, and is well worth a follow. I was happy to help out with the video.

https://t.co/6QZLe8Es2q

[Lizzy H @hopefullizzy]

I posted something positive about the SussexME group earlier in the week not realising all that they have done, I have taken it down but I’m sorry if I caused any offence, thank you for letting me know.

[Lizzy H @hopefullizzy]

Today is #worldMEday and part of #MEawarenessweek

I’ve had this horrific disease since I was 14yrs old. A fit, health and active teenager, until I got a severe gastric flu, and never recovered.

For the last 7yrs in various ways my health has been declining, until near death

[MarshFamilySongs @MarshSongs]

Happy Bank Holiday! Here's a tongue-in-cheek parody song about @Nigel_Farage accepting a massive gift from a cryptocurrency billionaire and then hiding from a BBC interview - to the iconic tune of the legendary @The_Proclaimers. We're calling it: "Five Million Quid" 💰🤑💰🤑💰🎶

[Adam @ABrokenBattery]

Psychiatry has caused a lot of delays and damage in the field of #MECFS. A lot of work needs to be done to undo harm from theories such as patients excessively resting, being afraid to exercise, or perpetuating their illness.

Dr Nina Muirhead, interview in The Times (2020)

[Adam @ABrokenBattery]

“Having earned my living as an inventor and a thinker, having limits on my thinking is pretty awful.”

Mark, a retired technologist, developed #MECFS after catching chickenpox in the mid-80s and gradually became more disabled.

From BBC Lifeline: Action for ME

[Lizzy H @hopefullizzy]

So thankful to be home. Here’s a tiny glimpse into the last months admission. 6months of the last 10 spent in hospital. I sincerely hope I can be home a while now.
Thank you for all your love.

https://t.co/d3WVl9RGoo

[Pat H 💙 @pathcath]

I've donated to David Tuller's crowdfunder. Hope he gets enough to keep going. We still need him
Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc https://t.co/AdBqwRIqNj

[Adam @ABrokenBattery]

Excellent piece in New Scientist on exercise research in #LongCovid and #MECFS.

Highlights studies ignoring post-exertional malaise, the PACE trial, and comments from David Tuller, Tom Kindlon and Todd Davenport.

Full article:
https://t.co/MxaRUXqK7E

[davidtuller @davidtuller1]

Trudie Chalder, King's College London's mathematically and factually challenged professor of CBT, appears to be trying to define "recovery" downward: https://t.co/fZEpwemMcP

[Tom Kindlon @TomKindlon]

From @onelife_livedwell on IG:
The PACE trial shaped an entire research paradigm, but the methodology tells a more complicated story. This is what happens when lived experience and research conclusions don’t align and why how we define things matters so much. #mecfs #pwme

[StatusIsDown @status_is_down]

Hargreaves Lansdown's app and website are reportedly down for hundreds of investors at the moment. Are you one of them? #HLInvest #HLInvestDown #HargreavesLansdown
https://t.co/aJ0r6We5Tz