sarah boothby

@swastrosarah.bsky.social

Speaking up for everyone affected by severe/very severe ME/LongCovidME. #MEKills #MaeveInquest #pwME

backstory: https://x.com/swastrosarah?lang=en-GB Justice4ME.uk

ME is much more than chronic fatigue; it kills every year.

@wamesmecfs.bsky.socialReposted by @swastrosarah.bsky.social

Older people (aged 60+) are invited to contact the Older People's Commissioner's Advice and Assistance team to report a problem that you, or someone you know, has experienced with health, social care, or community services in Wales, or if you have questions about your rights.
tinyurl.com/msr88yd3

@valebodi.bsky.socialReposted by @swastrosarah.bsky.social

It is about more than scientific care or appreciative words. A wrong understanding of the disease leads to harmful treatments.

If you do not understand #MECFS and #PEM, you can treat patients in a friendly manner and still seriously damage them. Kindness does not replace professional competence.

@alemmatthees.bsky.socialReposted by @swastrosarah.bsky.social

(1/3) Total funding allocated to research on #MECFS over decades is roughly what a disease of similiar prevalence and impact would receive every year, and much of it was wasted. People can debate the reasons for this gross negligence, but they cannot argue that research avenues have been exhausted.

@swastrosarah.bsky.social

Agree! It's a dividing wall in many professions. When the professional finds themselves on the receiving end, they have no pride in the judgements being made, or the lack of support once they are made. It's an indictment of bourgie values. Social authority without moral responsibility. Criminal

@meownersclub.bsky.socialReposted by @swastrosarah.bsky.social

Yup. Gradually increasing activity causes iatrogenic disability and death in #ME

Forty years of this determined medical ignorance and victim blaming in the face of the reality of the illness makes me so angry. Grrrrr

@swastrosarah.bsky.social

"Unlike classic rehabilitation offers, it is not a question of gradually increasing physical performance. Rather, the aim is to protect the existing forces and to maintain the quality of life as much as possible." (Translated from German)

@swastrosarah.bsky.social

"The disease means far more than physical exhaustion or limited performance. It can tear people out of their previous social lives, make relationships difficult and give people the feeling of no longer being part of society. Even positive experiences or conversations could lead to a health overload"

@swastrosarah.bsky.social

"The presentation was preluded by Giovanni Maio, Professor of Medical Ethics at the University of Freiburg. Under the title “Ethics of Vulnerability” he highlighted the profound impact of ME/CFS on the lives of those affected."

@swastrosarah.bsky.social

Justice4ME.uk is pursuing this claim by challenging the UK Government's "Final Delivery Plan" to actually deliver safe health and care services.
NHS has failed to do it, so court hearings are coming closer, but abolition of @england.nhs.uk is due April '27 so ... they all kick it down the road.

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