Broken Battery Updates

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
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“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
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Article: Kirklees Council called to 'bridge gap' in 'debilitating' chronic condition care
www.examinerlive.co.uk

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 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
 
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
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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?...
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“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.


Article: WABI TV, 4 August 2026
www.wabi.tv

‘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 www.wabi.tv
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