1/6 Yesterday I did a thread on #BringMillieHome & #SevereME Some people commented on my proposal that UK ME orgs shd, in coalition, create/fund a Crisis Team for cases such as Millie's. The orgs have cash reserves; this is one way they could be put to good use. Detail follows 🧵

Speedtrial This right here is *the* question. Who hired him?

And who decided to sic him on ME patients?

How can we stand back and let this happen for decades we have see the suffering time to bring it to an end #BringMillieHome #DontLetMEDie please get involved

BBC News (UK) Millie's diagnosis of #ME is confirmed by the leading expert in #ME in the UK who was on the NICE guidelines committee for #ME cfs
Its inaccurate & misleading to state that her diagnosis is simply one which is 'believed' by her family
#BringMillieHome #MedTwitter

Absolutely! BBC News (UK) North West, huge thanks for covering this story. Millie isn’t the only young woman in the UK in this dreadful situation, but facts vital to the true understanding of Millie’s situation were missing from your report. Please do continue reporting on this. 🙏👇

Covid Castaways 💯🎯 and THIS 👇

Thank you, Valerie Valerie Eliot Smith, for illuminating the crisis regarding Millie's care; and for devising a document that can affect change & policy to help other ME patients, like Millie. #BringMillieHome 🛌⚖️

#BringMillieHome
1/9 🧵
There has been much recent media coverage/discussion about the case of Millie McAinsh. Millie is a young woman who has been diagnosed with #SevereME . She was admitted to the Royal Lancaster Infirmary some time ago as she was unable to ingest/digest food.

Tom Kindlon That’s a lot of discussion by prominent people occupying prominent positions about a poorly conceived, analyzed, and reported study that should be retracted.

“ NIH continúa reteniendo financiación para #MyalgicEncephalomyelitis . Mire este video clip en el que acabo de pedir 40 millones para financiación y sea testigo de cómo “responde” el Dr. Maire/NIH (1/2)

BBC Northwest Tonight Clip about Millie who has Severe #MECFS - 'A family's campaign to have a teenager removed from Lancaster Hospital is attracting international attention'. Millie has been there for 10 weeks unable to eat without a feeding tube and can barely move.

It only took me a few months in #LongCovid land to discover what actually had happened with #MECFS . My concerns about the future of #LongCovid have mostly now been validated.

Some time will pass, but many are going to catch up, and simply be :

Angry about the past.

#pwME & #longcovid we need to be aware of the engrained disdain within certain research orgs. Please be open to the idea that just because funding has been headlined & hopefully obtained, that it's actually USED for the purpose it was intended

Eileen 🔊 Hillary Johnson: journalist NIH I think #LongCovid advocates are asking for an advisory committee. They need to review how that was handled for 'CFS' and be ready to act accordingly.

Jeannette Burmeister Eileen 🔊 Hillary Johnson: journalist NIH Ten million is a spit in the wind for them. Withholding funding was never a budget issue. And blowing up is an abuse tactic—so maybe next time the desperately ill patients will be afraid to ask.

Eileen 🔊 Hillary Johnson: journalist NIH Holding my head to keep it from exploding.

Jeannette Burmeister Eileen 🔊 Hillary Johnson: journalist NIH Disdain for M.E. patients … palpable 😤

Eileen 🔊 Jeannette Burmeister Hillary Johnson: journalist NIH Totally empty Walitt … very lacking.

Eileen 🔊 Hillary Johnson: journalist NIH Imagine your life's purpose being to block funds for a group of debilitated patients, for decades, and dealing with it by being angry at patients who are just asking that you do your job as a civil servant! Making a difference alright--for the worse.