Anna Radcliffe 💙🇺🇦🌻

Missing from life since 2019 #mecfs. Still mum to my beautiful boy. Still happiest with hands in the dirt. Waiting for science to catch up. #mecfs #pwme

[Adam @ABrokenBattery]

“We surveyed 5,000 people with ME. The majority were not completing any paid work at all, and those who were, only 1 in 10 were able to work full-time.”

Action for ME’s Clare Ogden, giving evidence to UK Parliament #MECFS

[Carole Bruce @CaroleBruce17]

Open letter to The Royal College of Psychiatrists sent by Mark Harper and others on 13 July.
#ME

[Janet Dafoe @JanetDafoe]

We visited this place two summers ago. We were so impressed!
Full article: Specialised care for severely affected ME/CFS patients https://t.co/VXz0j1kQEY

[Adam @ABrokenBattery]

Clip: On Channel 4 News, Prof Chris Ponting tells a participant that the DecodeME study found eight genetic differences in people with MECFS — demonstrating that it’s a biological, organic illness.

[Tessa Munt MP 🔸 @tessamunt]

Big thanks to ⁦@JoPlattLeigh⁩ for sharing her challenging journey with #LongCovid. Yes, current ⁦⁦@DWPgovuk⁩ approaches to assessment fail #pwLC, #pwME. Proposed changes will deepen this injustice, with devastating consequences. Rethink time https://t.co/rHqrzfRhzb

[Anna Radcliffe 💙🇺🇦🌻 @AnnaRadcliffe74]

Please help dear Vlad if you can.

[Vlad Vexler @VladVexler]

Urgently seeking help from #pwME #pwLC :

Who tests for & treats microclots in UK
(outside of research studies)?

It’s been suggested I have microclots in my lungs and that this could have contributed / caused my life-threatening saturation event. Any thoughts on this?

Thank you, situation desperate.

[Vlad Vexler @VladVexler]

Urgently seeking help from #pwME #pwLC :

Who tests for & treats microclots in UK
(outside of research studies)?

It’s been suggested I have microclots in my lungs and that this could have contributed / caused my life-threatening saturation event. Any thoughts on this?

Thank you, situation desperate.

[Anna Radcliffe 💙🇺🇦🌻 @AnnaRadcliffe74]

@VladVexler Dearest Vlad, I’m saddened to hear that you are so unwell. Sending courage, love and hope. xx

[Adam @ABrokenBattery]

Clip about the Lightning Process and #LongCovid on BBC Con or Cure. @oonagh_cousins explains the process of saying stop out loud to stop negative thoughts. Dr Melissa Heightman says it doesn't make "medical sense" also mentions #MECFS NICE Guideline.

[TheBossRoss 🇪🇺 🧶 ❄ 📷 6x💉 @BettinaSRoss1]

A new Insta trend: workplaces (esp hospitals & care homes) in Germany show how they, how *we* all rely on migrants who work there, how they are part of this country, our friends, colleagues. We'd be poorer w/o them. They are appreciated. They are us.

#GoodMorning, everyone.

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

This is the KEY to #LongCovid, #MECFS, and #Dysautonomia. The vagal nuclei are located at the dorsolateral inferior medulla, which is the most likely CNS localization of #LongCovid, #MECFS and #Dysautonomia in general. My paper explains further: 👇
https://t.co/A01HSxaThd

[Putrino Lab @PutrinoLab]

Feels like a good time for a little reminder: Countries aren't supposed to be run like businesses. Countries are supposed to spend money to support and serve their people. This means spending to support those living below the poverty line, the disabled and historically 1/

[Anna Radcliffe 💙🇺🇦🌻 @AnnaRadcliffe74]

@jason_isaia @RorPreston @RayDalio @OpenMedF Open Medicine Foundation Inc
EIN: 26-4712664
29302 LARO DR
AGOURA HILLS, CA 91301-1608

[Karen Hargrave @karenlhargrave.🦋.social @KarenLHargrave]

@LBC @wesstreeting @ShelaghFogarty Last month 200+ healthcare workers wrote to Wes calling for urgent action to make NHS care safe for people with ME. He hasn’t yet responded. A recent coroner’s report said that more lives are at risk without change. Can he give us an answer live on air?

https://t.co/Tj80LZwvFG

[Tatiana Prowell, MD @tmprowell]

Researchers exposed skeletal muscle to serum from ppl w/ #MECFS or #LongCovid

@48 hrs : contractile
profile severely compromised, shift to glycolysis

@ 96-144 hrs: high fatiguability, fragile tissue, fragmented mitochondria

#MedTwitter, PEM is real.

https://t.co/Q9QQKYZLGR

[Adam @ABrokenBattery]

🧵of news articles, radio and TV about the landmark prevention of future deaths report following the death of Maeve Boothby O'Neill from Severe #ME

[Carole Bruce @CaroleBruce17]

An up to date thread of all current (there are a lot 👏👏👏) media on #ME compiled by our excellent archivist @ABrokenBattery

[Fiona Hamilton @Fhamiltontimes]

NEW. Coroner in Maeve Boothy O’Neill inquest has said that treatment and research for ME needs overhaul to prevent future deaths

Reg 28 rulings are too often ignored - Maeve’s case shows how desperately ME patients need action. Over to you @wesstreeting

https://t.co/vxq1OyhHsx

[PolyBio @polybioRF]

Yes. Hopefully ok to say out loud, and to further study! 🤓

This @polybioRF project is using brain cell models to determine if #SARS-CoV-2 can seed #Alzheimer’s-associated proteins such as amyloid plaque and Tau:

https://t.co/qJCdHRBmFJ

[Anna Radcliffe 💙🇺🇦🌻 @AnnaRadcliffe74]

@RobWust @PutrinoLab Have to catch before PEM. Phenergan as tipping into crash, can tamp down flushing/swelling/autonomic/gastric, & help with sleep. About to try alternative - fexofenadine in pm (when often start to crash) instead of am - as helped, but not matched with pre-crash timing. #mecfs