CoolerKing

2022 is year 25 of being 90-95% bedbound in a darkened room with ME.

I finally accessed medical treatment for POTS in 2020, 22 years after becoming ill.

[davidtuller @davidtuller1]

My post about the @WIRED story by @AlanLevinovitz clocked in at 3,000+ words--not quite half the length of the story itself. Sorry!!--I tried to keep it shorter, but there was just so much to say. And more likely to come. https://t.co/DhCa3qGo1f

[DPAC @Dis_PPL_Protest]

#PIPReview

The call for evidence for Timms PIP Review ends on Thursday 28th May at 11.59 pm

You still have time to send a submission for the call for evidence

[davidtuller @davidtuller1]

We have been told categorically for years that function FND is exclusively a brain "software"/"brain network" problem. Those suggesting other biomedical pathways were charged as "dualistic." Now FND experts themselves kibosh the "software"-only theory: https://t.co/jTKBt3YeU6

[davidtuller @davidtuller1]

A recent paper made a categorical assertion about the cause of functional neurological symptoms. This definitive statement is unwarranted, given the state of the evidence. I have written to the journal asking for the sentence to be corrected: https://t.co/qEBk1TdbSR

[Adam @ABrokenBattery]

“The injustice of it, I couldn’t believe it”

Former Team GB rower @oonagh_cousins talking about the #MECFS “scandal” where patients were told they were deconditioned & needed Graded Exercise & CBT

It is the “opposite of what they needed” & that legacy still runs “super deep”

[Adam @ABrokenBattery]

“They’ve had their lives completely demolished by this illness.”

Millions are living with #LongCovid while society has moved on.

Former Team GB rower @oonagh_cousins developed #MECFS following Covid and had to retire.

[Carole Bruce @CaroleBruce17]

‘The withholding of lifesaving care is not a theoretical concern: it is a documented, devastating outcome of misapplying psychosomatic models to a serious, organic illness.’
BMJ opinion piece on treatment of #ME patients.
Too many die Too many suffer for decades.
#MEAwarenessDay

[markmooch @MarkMooch]

Neurologist Dr Bing says:

“people were told that this was stress but now we know that there are measurable biological changes”

“like a phone that says it has 80%, you open an app it drops to 5%, the numbers look fine, but the system is not working properly.”

#MEAwarenessDay

[Adam @ABrokenBattery]

Today is #MEAwarenessDay

ME/CFS is often described as neglected and under-researched. That ignores the true history. George Monbiot and Carol Monaghan have described it as one of the greatest medical scandals of the 21st century. They’re right.

[Jack | amatica health @JackHadfield14]

Studies have shown positive outlook or wishful thinking has never shown reductions in disease status for serious diseases.

It does not prolong cancer patients lives, it does not reduce MS disability, etc

You cannot wish one think away serious diseases.

[Adam @ABrokenBattery]

Wes Streeting wants GPs to stop writing so many sick notes and send people to the gym.

Worth remembering Brynmor John MP had #MECFS and died on Westminster Bridge in 1988 after exercising in the House of Commons gym. He had been advised to exercise his way back to fitness.

[davidtuller @davidtuller1]

This has been a challenging crowdfunding for Berkeley's Trial by Error project on ME, ME/CFS, Long COVID, etc, but it seems like things are catching up in the final days. Now at 80% of the goal! Thanks to all!!! https://t.co/Ad1zvdxXd4

[Adam @ABrokenBattery]

“To fight for ourselves is dangerous.”

Maggie Boxey has #MECFS following a suspected Covid infection. In her TEDx talk, she explains that after speaking to Congress, she spent several days in a crash and that if she’s not careful, it could permanently lower her baseline.

[Ina • SPOTLIGHT VERY SEVERE M.E. @tink_ina]

Very severe should be the poster child for #mecfs, but today it’s thought of as an exception. 1 in 4 are bed-bound: this is not an exception. This is my contribution to shifting the messaging. When people think of ME/CFS, the image of a bed-bound human, isolated in a dark room should come to mind. The rest is on Instagram.
https://t.co/EdUrYJnJva
#mecfs #longcovid

[Jack | amatica health @JackHadfield14]

Researchers have identified the cause of clotting seen after some COVID vaccines. In certain people, a common inherited gene version plus prior adenovirus exposure led to an immune mistake that triggered clotting.

[ME/CFS Science @mecfsskeptic]

1) Trigger warning: suicide

This paper analyzed 505 entries on the National CFIDS Foundation memorial list.

These were people with ME/CFS who passed away. The messages summarize their life, illness and struggles. The researchers grouped these into several recurring themes.

[Adam @ABrokenBattery]

As George Monbiot says in this clip @davidtuller1’s work was “absolutely crucial” in helping him understand the problems with #MEcfs research when writing his seminal article.

I’ve just donated to David’s crowdfunding campaign to help keep his work going.

[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

[Adam @ABrokenBattery]

My #MECFS scandal explainer video has just passed 200,000 views.

Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since.

https://t.co/Q7QlyNmgiT

[Disability News Service @johnpringdns]

The government is facing accusations of a cover-up after refusing to release a report that examined the quality of PIP assessments, following a sub-standard test linked to the death or serious harm suffered by a disabled claimant.
#PIP #DWP
https://t.co/HkghR9XGsN