Great headline.
A lot more unravelling of CFS is needed.

More than that, children are the generation that will be looking after the boomers in their dotage.
Assisted Dying writ a lot larger, given how exclusive from the plenty boomers enjoy when compared with child poverty in fact.
I speak from personal & professional experience.

The implications of this finding for policy is that the longer government delays, the more disabled #pwME become. What Vlad omits to mention is the high burden of care his good mental health creates for another talented person. The moral impossibility of abandoning anyone so disabled has weight.

NOTE: n=1 is a case study; not a basis for policy. That said, my research finds very severe ME px across the UK (info mediated remotely by dedicated, round the clock, family carers as these #pwME are too unwell to speak for themselves) pharma intolerance is normal after 2+ yrs with ME.

I suspect this article framing is a way to criticise the upcoming doctors' strikes.

The real cause for alarm for me is that the NHS is going into this winter stressed and stretched *yet again*.

We should have a health system that can cope much better with winter pressures and we just don’t. 7/8

It's experiences like this one that lead me to remark upon treachery in the so-called ME community.

Ask Jo how it finally played out?

Ime, AfME refused to speak up for the family, Ella's only protection from NHS neglect. So I did.
AfME could have called 'organisational neglect' & risk of lasting harm from PEM in CP meetings. Instead: colluded with LA against parents.

Shameless publicity seeking

🌹Oh god 🥀💐🌹🥀💐

Its a major medical scandal the way ME sufferers are treated. Devastating news , poor poor girl

Yep. Another scandalous death following extreme cruelty at Jimmie's, ably assisted by Action for ME. They blamed parents. As usual.
I reported Ella's ward Matron under safeguarding. Guess what: the hospital repeatedly failed CQC safeguarding inspections.
She should have gone home. Brave family.

Yep. Another scandalous death following extreme cruelty at Jimmie's, ably assisted by Action for ME. They blamed parents. As usual.
I reported Ella's ward Matron under safeguarding. Guess what: the hospital repeatedly failed CQC safeguarding inspections.
She should have gone home. Brave family.

The pundits.

🫂

🩰

Hmmm. Are you proving my point?
😅

Yeah, Ezra. Thank you for sharing that. Resonates with me, too. For me, the hardest thing is waking in the night. I'm always full of adrenaline from dysautonomia heart-racing then. Or the doom feeling. Would be so nice to have someone there to say "Are you okay? Do you need anything?"

I know the way relationships and romantic love are portrayed in our society differs a lot from ours. It’s easy to compare your life to the norm, even when life as a bedbound, disabled and severely ill person is totally different. We are allowed to define what love and a relationship look like to us.

I never thought something like this would be possible in a situation like ours. Yet, Line has shown me we can do things our own way despite the hard circumstances. We both have severe ME and live in different countries, she in Denmark and I in Finland, but our love knows no borders. 2/8