Adam

Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.

[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

[Adam @ABrokenBattery]

Article:
Features other New Zealand families affected by #MECFS, including Wendy’s daughter, Sophie, who also has the illness.

https://t.co/8nP0SC5m9a

[Adam @ABrokenBattery]

“I went down to 36 kg because I stopped being able to tolerate a whole range of foods.”

Wendy Matthews has lived with #MECFS for 28 years and has been bedbound for the last 7. She talks about her symptoms, how the illness has impacted her, and how #MECFS is not rare.

[Adam @ABrokenBattery]

Here is a more recent article from 2011

https://t.co/DH47F5BLza

[Adam @ABrokenBattery]

Yvette Cooper has been appointed UK Health Secretary. She wrote this article after recovering from #MECFS in 1996. Hopefully her views have evolved since then and she now has a better understanding of severe and long-term ME.

[Adam @ABrokenBattery]

@bojack90s Yvette Cooper's 1996 article where she said CFS is 'unhelpfully called ME', those who remain sick 'hog the airwaves' and describes ME Support groups raising awareness as 'gloom mongering' that quickly turns pity into 'contempt' and 'boredom'.

https://t.co/551mbYpb1z

[Adam @ABrokenBattery]

Full segment (11 mins):
https://t.co/v2TQyMUEMx

More on the PACE trial:
https://t.co/oukeP7G4we

[Adam @ABrokenBattery]

"They perpetuated a real misunderstanding around the world" about what #MECFS is.

@davidtuller1 speaking on the South African investigative programme Carte Blanche about the impact of the discredited PACE trial in 2017.

[Adam @ABrokenBattery]

I hate the term Chronic Fatigue Syndrome because “fatigue doesn’t even come close to describing what it is” and it’s “a minor symptom” compared to the others.

Natalie Williams explains why CFS is misleading. #MECFS

[Adam @ABrokenBattery]

NICE withdrew Graded Exercise Therapy and downgraded CBT, the treatments tested in the PACE trial, in 2021 because the research was flawed and many patients reported harm.

George Monbiot’s article on the scandal:
https://t.co/9Wcs5XLnIO

[Adam @ABrokenBattery]

The Biology Matters podcast by @precisionlifeAI. Why #MECFS has been neglected for decades and why that’s finally changing. Sonya Chowdhury, CEO of @actionforme, interviewed by Steve Gardner. (56 mins).

https://t.co/mSIMj72RG3

[Adam @ABrokenBattery]

"This is serious neglect, and in some situations, abuse... As a former child protection social worker, I've seen some harrowing things and the way some people with severe ME are treated is up there.”

Sonya Chowdhury, CEO of @actionforme #MECFS

[Adam @ABrokenBattery]

“ME is a really horrific illness… Many people tell us that ME steals their lives quite literally.”

Sonya Chowdhury, CEO of @actionforme, explains Myalgic Encephalomyelitis (ME) and its symptoms. Clip from the Biology Matters podcast by @precisionlifeAI. #MECFS

[Adam @ABrokenBattery]

The Biology Matters podcast by @precisionlifeAI. Why #MECFS has been neglected for decades and why that’s finally changing. Sonya Chowdhury, CEO of @actionforme, interviewed by Steve Gardner. (56 mins).

https://t.co/mSIMj72RG3

[Adam @ABrokenBattery]

“ME is a really horrific illness… Many people tell us that ME steals their lives quite literally.”

Sonya Chowdhury, CEO of @actionforme, explains Myalgic Encephalomyelitis (ME) and its symptoms. Clip from the Biology Matters podcast by @precisionlifeAI. #MECFS

[Carole Bruce @CaroleBruce17]

#ME patients and carers. Do you know of anyone on assisted feeding? There is no data on the number of people affected and it’s incredibly important that numbers both past and present are recorded. Many severe ME patients suffer from lack of NHS knowledge and cooperation.
🇬🇧only

[Adam @ABrokenBattery]

More info
https://t.co/rPlMistCsq

Full session
https://t.co/N9exWW1nSD

[Adam @ABrokenBattery]

“For people with severe and very severe ME, the amount they can do without triggering post-exertional malaise is very small, and this group of people are just too ill to work.”

Action for ME’s Clare Ogden giving evidence to the UK Parliament #MECFS

[Adam @ABrokenBattery]

“We surveyed 5,000 people with ME. The majority were not completing any paid work at all, and those who were, only 1 in 10 were able to work full-time.”

Action for ME’s Clare Ogden, giving evidence to UK Parliament #MECFS

[Adam @ABrokenBattery]

Highlights - Action for ME’s Clare Ogden, giving evidence to the UK Parliament’s Women and Equalities Committee inquiry into flexible working and disability (9 mins)

https://t.co/L4BhBbFsy9

[Adam @ABrokenBattery]

More info
https://t.co/rPlMistCsq

Full session
https://t.co/N9exWW1nSD

[Adam @ABrokenBattery]

“We surveyed 5,000 people with ME. The majority were not completing any paid work at all, and those who were, only 1 in 10 were able to work full-time.”

Action for ME’s Clare Ogden, giving evidence to UK Parliament #MECFS

[Adam @ABrokenBattery]

Highlights - Action for ME’s Clare Ogden, giving evidence to the UK Parliament’s Women and Equalities Committee inquiry into flexible working and disability (9 mins)

https://t.co/L4BhBbFsy9

[Carole Bruce @CaroleBruce17]

Open letter to The Royal College of Psychiatrists sent by Mark Harper and others on 13 July.
#ME

[ME/CFS Science @mecfsskeptic]

1) 🇩🇪 There's a new randomised trial of cognitive behavioural therapy (CBT) for Long Covid, from the Johannes Gutenberg University Mainz in Germany.

It claims that CBT lowered fatigue but it has the usual fatal limitations that make the results unreliable.