Broken Battery Updates

[Adam pwme]

 

[Chandelier]

My 27-minute #MECFS Medical Scandal Explainer video has now passed 300,000 views on YouTube.

Amazing work, congratulations and a big thank you!

 

[Adam pwme]

Amazing work, congratulations and a big thank you!

Thanks

 

[Trish]

Wow, thank you @Adam pwme.

 

[Chandelier]

I‘m very impressed by this interview with Karen from TheresME.
A ME/CFS sufferer herself, she takes care of her husband who is very severe, explains ME/CFS to every healthcare professional on the way, and all the while tries to avoid bankruptcy due to a lack of support by the social systems.

My husband's care costs have reached £65,000 - we've had to sell our flat.
Karen Hargrave says she and her husband probably have a year before their savings run
out

“He has difficulty with chewing and swallowing… it’s a struggle to make sure that we’re getting the right nutrition, the right hydration into him… basically to be keeping him alive.”@karenlhargrave.bsky.social on caring for her husband James, who developed very severe ME following COVID. #MECFS

 

[forestglip]

Here's a link to the above news story: https://inews.co.uk/inews-lifestyle/money/husband-care-costs-reached-sell-flat-4423775

 

[Adam pwme]

 

[Adam pwme]

Article: Kirklees Council called to 'bridge gap' in 'debilitating' chronic condition care

Kirklees Council called to 'bridge gap' in 'debilitating' chronic condition care

Myalgic Encephalomyelitis (ME) is a complex, long-term neurological disease

www.examinerlive.co.uk

Full council discussion (~54 mins):
Kirklees Council’s Health and Adult Social Care Scrutiny Panel on concerns over local ME/CFS provision

 

[Adam pwme]

 

[Chandelier]

Heart breaking stuff, really, hearing this mother talk in a very calm and structured way about how the upcoming assessments are potentially life-threatening for her daughter and that no one at the NHS seems to receive that message:

“ME is a very dangerous & debilitating condition.”Karen Gordon’s mum, explains why travelling 100 miles for an assessment could cause a serious relapse. Karen needs tube feeding & would be better off at home but is effectively trapped in hospital. #MECFS #SevereMEAwarenessWeek

Nearly two years later, Karen is still in hospital.
Read more about her case and sign the petition below.
The family’s latest update was shared two months ago.
Petition www.change.org/p/save-karen...
Full video Sky News 2024 (20 mins) youtu.be/FX6Fk9-WSmo?...

 

[Chandelier]

“I have felt nauseous for six and a half years.”
Sociology professor Amy Blackstone developed #LongCovid in 2020 and was later diagnosed with #MECFS.
She is calling for Congress to approve $50m to fund the NIH ME/CFS Research Roadmap.

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Article: WABI TV, 4 August 2026

‘Life-changing funding’: UMaine professor advocates for Chronic Fatigue research funding

The funding is included in the Senate’s FY27 Labor-HHS appropriations bill. There is a target budget deadline of Sept. 30, but that could be pushed back if a continuing resolution is passed.

www.wabi.tv

 

[Adam pwme]

 

[Adam pwme]

 

[Adam pwme]

 

[Adam pwme]

 

[Adam pwme]

 

[Adam pwme]

 

[Chandelier]

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These graphs show the scale of the neglect.​

In the 20 years before the pandemic, Sky News found just 2,007 new scientific publications on ME/CFS compared with nearly 45,000 on psoriasis and 114,000 on Parkinson’s.​

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Article news.sky.com/story/how-lo...​

Full video Sky News | How long COVID ruined my life (and why it won’t go away) (15 mins)​

youtu.be/Fm8WsO_FQYk?...​

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