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I am incandescent with anger colleagues in the NHS were shafted! No ifs, no buts, the guidance was changed because they didn't have enough PPE. People must take responsibility for this - lives of NHS workers were lost.

Rachel Turner Robert Howard oldgitfitness Gar McGuigan Lastly I recently attended the (mostly useless) NHS clinic for ME/CFS. It consists of weeks of psychological work & approaches. Also techniques for sleep & pacing (the former most ineffective, the latter already known by most) So this psychs are a total pariah is a bit of a myth

we're barely getting by through independent research, expensive private doctors, and crossed fingers. and that's with me dedicating almost all of my time to my partner's care. people with severe ME without a support network don't stand a chance with our current healthcare system.

Is there a news black out on the revelations in the #covidinquiry? Seems like it to me.

Sorry if it seems like I've unfollowed any of you lovely people, but I haven't, it's this platform again. The only people I've unfollowed in the last month, I've also blocked. If you're trying to stop the spread of Covid, or trying to deal with Long Covid, I want to follow you.

#PwME researchers, doctors - when do you think there will be treatments available - in how many years' time? And what are you basing that estimation on? Usually I don't like to think about it, but saw people discussing yesterday. #MyalgicEncephalomyelitis

The biggest 2-day exercise study - ME/CFS Skeptic (mecfsskeptic.com) Interesting read but kind of 'now we're up a cul de sac again' situation...

Anyone with #POTS got advice on beta blockers that don't mess with thyroid production/transition of T4 to T3/uptake?

Paula Knight I'm not sure about time scales. But as I understand it the sequence is: Phase 1 trial: say 20 people Phase 2 trial: ??? people Phase 3 trial: more than 500 people But in ME research we rarely seem to get past phase 1 because the money isn't there.

Kyle We are the same. Sending strength to you 💙

My employer did everything "right". They tried to add flexibility, they did everything they could to work with me and do anything possible to keep me working. I still couldn't work. Employer support is vital, but it isn't a solution for everyone.

✍️Due to the influx of support from healthcare professionals after the #ThereForME open letter was published, we're compiling a second list of signatories! Follow the link to add your signature here: forms.gle/f87kuUfT4qWxbQ… Please note we are looking for *UK-based HCPs*

Cambridge ME group Paul Keeble ME/LC Yeah, the results showing the effectiveness of FFP3 in preventing infections were made public by June 2021. cam.ac.uk/research/news/…

Brilliant 🙃 just the news I needed right now… It’s already been moved back twice. Was supposed to be 5months. Delayed by 19months. Honestly feeling heartbroken that the NHS seems so broken by Tories.

CureME - UK ME/CFS Biobank Would Dr Eliana Lacerda, Caroline Kingdon & Dr Luis Nacul be willing to sign this extremely important letter which #ThereForME have written to Wes Streeting MP ? x.com/oonagh_cousins…

It’s not too late! If you’re a UK healthcare worker and support our #WorldPatientSafetyDay letter you can still add your name to our list 👇

Rae We need to urgently reverse staff going to work in hospitals with Covid. Surgeons are being told to operate! Wes Streeting MP it is not good enough. We urgently need FFP3 in healthcare settings.

Techbio company, PrecisionLife, and US research centre, the Metrodora Institute, today announced that they have begun sharing the first research results with participants from Metrodora’s MetX study. bit.ly/3zrDMSj

Recruitment for US based patients open now Visit research.metrodora.co

I want to be advocating and lobbying and writing articles and maybe even another book about long covid. Instead, all I can manage are short tweets about how freaking miserable this illness is. Complaining is only a tiny spoon.