sarah boothby
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swastrosarah.bsky.social
sarah boothby
@swastrosarah.bsky.social
Speaking up for everyone affected by severe/very severe ME.
#MEKills #MaeveInquest #LongCovidME

backstory https://x.com/swastrosarah?lang=en-GB #PlanForME #JusticeForME

ME is much more than chronic fatigue; it kills every year.
If you don't believe in your own intrinsic worth, how do you value anyone else?
November 17, 2025 at 6:08 PM
Reposted by sarah boothby
Alice reminded us that these bonds are world-making. They are the underground architecture that lets us survive a political order that treats disabled life as disposable. She insisted on holding disabled brilliance close, refusing the erasure capitalism demands.
November 16, 2025 at 12:08 AM
and fidelity to reporting what is known (without exaggeration or exception) make him one of the best advocates for #pwME I know.
With thanks to the love of his family carers #Close2ME
@ashleydaltonmp.bsky.social @gwynnemp.bsky.social
November 15, 2025 at 8:35 AM
Before Maeve died and Devon showed itself for what it is - eg Dr David Strain - I was trying to get another ME biobank set up in Exeter for SW England.
We need better knowledge of environmental factors in ME. Tens of thousands had ME from sheep dip - for example. Devon has a lot of sheep
November 14, 2025 at 6:32 PM
same in UK
November 14, 2025 at 6:29 PM
What is UKMEB, please Tom?
November 14, 2025 at 5:48 PM
Oops 'Inquiry'
November 14, 2025 at 1:24 PM
2/2 witnesses.
Maeve died from #ME, for which there is still 0 NHS provision. I had to stop work in March to care for her 24/7 until she died from medical neglect October 2021.
There is no NHS Long Covid provision either.
Investing in infrastructure has to mean health & care.
I was good at my job.
November 14, 2025 at 1:14 PM
Reposted by sarah boothby
In our experience (#ME pre pandemic), the safest option for families with SEND children after Austerity was: opt for home schooling.
Those unable to do this were harassed and fined without right of appeal.
It was a form of financial extortion from the most vulnerable. Magistrates were apologetic.
November 12, 2025 at 10:01 AM
Well you set a high bar there 😅
Can all those parameters apply anywhere? Lapland?
November 12, 2025 at 9:35 AM
Many ppl worldwide are alive, fit and healthy on vegetarian diets. They do not have ME, nor feed on her idea of a palientological diet.
Race being usually determined by heritage, heritage determined by geographical ancestry.
Please correct me.
November 10, 2025 at 11:11 PM
But her acknowledgement that mitochondria are central was unlikely to be wrong.
& the persecution of ANYONE who speaks up for #pwME is absolutely evidentiary. She and I are alike on this point.
The ICC is the acid test 🙏🏼🙏🏼 to all who wrote it.
@ashleydaltonmp.bsky.social fyi - not a local matter
November 10, 2025 at 10:15 PM
This is partly what I mean by treachery.
Ppl become so attached to their hypothesis, they forget it MUST be tested. Rigorously.
Sure, we all have to earn a living, but NOT at the expense of the most vulnerable families I have ever met. 24 years in social work. Disgraceful.
We know. Others must. 🙏🏼
November 10, 2025 at 9:36 PM