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“What we’re trying to do is measure everything,” said Michal Caspi Tal, an immunologist at MIT, who is leading the study, which also includes acute Lyme and long Covid participants. “I want to find a way to give people hope.”

Actual #GreatestMEdicalScandal coverage 👀 “ Recognizing long COVID as part of an ongoing historical pattern is the first step in breaking a dire cycle.” 🙏🏻

The Final Delivery Plan for ME/CFS has been released today. The full report was shared with some organisations and media outlets late yesterday. We’re waiting for it to go online. A short 🧵with some thoughts… (1/)

Severe ME/CFS. After a mild PEM a week ago, I’ve been getting weaker each day 😞 Feel like I’m about to fade away. Even lifting a glass give me muscle pain. Anyone been through this and found a way out? I’m scared I’ll soon be too weak to eat 🥺 #MECFS #SevereME #PEM

Please read Karen's 10-post thread for the positives and negatives of the Plan (still waiting for it to be shared online). There's still work to be done...

Thank you sarah and Binita Kane for speaking so clearly about the issues here. 🙏

Disgusted to come across this on Facebook just now. She talks about maladaptive behaviour traits being at the root of her ME. Of course she has a "recovery course" to sell. anjgranieri.com/store

Today we’re celebrating a year to the day since Karen Hargrave @karenlhargrave.🦋.social & Emma GL 🐙🦋 launched #ThereForME! We had a busy day yesterday responding to the Delivery Plan release. It’s clear how much more our campaign has left to do - but today we’re reflecting on what we’ve done so far.

1 year of #ThereForME ! Still count my lucky stars that Karen + Emma invited me to join the team. So proud of what we’ve achieved. Huge thanks to everyone who’s supported us -letters, interviews, surveys, shares. Our power is collective - we couldn’t have done it without you

Especially after yesterday, a MASSIVE shoutout to Adam for capturing so many of these moments! 🙏 Total public service to the ME community and we’re very, very grateful.

(1/5) It has been great to collaborate with #ThereForME this year on their campaign to create an NHS that's there for people with ME and Long Covid.

Doctors are to be given training in better ways to diagnose and treat people with ME - as part of a long delayed action plan that's finally been published. The debilitating condition with a range of symptoms including severe exhaustion and constant pain, affects around 400,000

“It is disappointing that there’s no dedicated funding, no ring-fenced [funding].” – Sajid Javid on the new #MECFS delivery plan. Clip from Channel 4 News, also featuring Dr Binita Kane (Binita Kane) and Nick Benton (Nick Benton).

Hard relate. I haven't seen my partner's eyes for over 2 years. I thought the C4 piece was excellent, but perhaps cut away a bit too quickly after Nick talked about his access to private medical care.

The PCR positivity map is out. National positivity is up another 0.3 to 6.3%, and in my view that figure is certainly lower than the actual level. I'll explain why in what follows. jamestindall.info/skeuomorpholog… 1/8

Improving healthcare services for people with ME and Long Covid: Patients share their challenges, and the actions needed. pslhub.org/learn/improvin… #patientsafety

What does IACC mean? Infection-associated chronic conditions like ME/CFS & Long COVID often follow infections, but remain poorly understood. Dr. Bateman shares how the IACC framework can help science move forward in our latest blog. 🔗 bit.ly/4kXhQQz #IACC @openmedf

“Progress will come not from arguing over labels, but from uniting around shared goals: greater understanding, better treatments, and compassionate care.” Lucinda Bateman #LongCovid #MEcfs #IACC