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?...