🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

DecodeME: “X marks the spot where ME/CFS biology can be discovered” “DecodeME looked at the DNA of 15,579 people with an ME/CFS diagnosis…the analysis revealed eight genetic ‘signals’ for ME/CFS from the nine million variants studied” #DecodeME decodeme.org.uk/x-marks-the-sp…

#MEAwarenessHour patients desperate for more research

#MEAwarenessHour

A really important breakthrough from the DecodeME the ME/CFS Study - this should be the start of more research not the end of the project. Story by Eleanor Hayward. One for Department of Health and Social Care DHSC Media Centre Ashley Dalton MP Enjoy this article for free. thetimes.com/uk/healthcare/…

BBC Radio Scotland’s - Good Morning Scotland features MEAction Scotland volunteer Victoria, who developed #MECFS following Covid. She discusses the DecodeME study results and the lack of specialist care in Scotland. (6 mins) youtu.be/Rj1w9RMQIsk?si…

He died from Long COVID today. His words: “I’ve experienced more discrimination and stigma for being openly disabled by #LongCovid than I ever did for being openly gay” When will the gaslighting stop? How many more need to die?

💜 Over 2 million Europeans live with ME 🛌 25% are house-or bedbound, often for decades 📉 Billions are lost in disability claims, productivity, and delayed care This is more than a health crisis — it is also an economic crisis hiding in plain sight #MECFS #SevereMEDay 2/4

EMEA proposals the EU can take now-with existing tools: ✔️ Fund EU-level ME impact study ✔️ Coordinate research via European ME Research Group (EMERG) & Young European ME Research Group ✔️ Provide open-access training for clinicians ✔️ Include ME in disability policy frameworks europeanmealliance.org/news-Q32025-00… #SevereMEDay 4/4

What if your body couldn’t bear light, sound, movement — or even touch? Today, #SevereMEDay, we ask you to imagine living that way not just for a day… but for years. For people living with Very Severe ME, this isn’t a metaphor — it’s reality. 🧵

On #SevereMEDay my thoughts are with those who are living (or existing) in one room. It is unimaginable unless you’ve lived it or witnessed it first hand. Also thinking of their unpaid carers who go above and beyond.

Thinking of SJ today (Sarah Jane Lewis) on #severemeday2025 SJ died by suicide last awareness day, unable to continue living alone with little outside contact. This is the real cost of deciding not to #fundtheplan leaving people living in horrific circumstances few choices.

I want to say thank you to Adam, who despite having #SevereME manages somehow by magic, and a lot of his energy and hard work, to capture all the media discussions on #MyalgicEncephalomyelitis as well a making incredibly informative awareness videos. Thank you Adam💙

On severe MECFS day I take a moment of silence to remember the suffering of very severe patients. I remember their caregivers, allies and doctors who care for them. I implore all who don’t believe this disease is real to educate themselves so they can provide appropriate care.

Thinking of everyone enduring #SevereME or #verysevereME today, yesterday, tomorrow, 10yrs ago, or 10 from now. Those we have lost, all that are barely clinging on, & all who are existing in the best way they can in the confines. You matter. It’s hell. You’re not alone💙

Alisontomyradioooo A slide from our tribute to Sarah Jane at the start of the #IIMEC17 International ME Conference this year #mecfs

Wes Streeting failure to #FundThePlan means #pwME & their carers continue to ask themselves is it safer to stay home rather than go to hospital? If we go, will we be harmed with inappropriate treatment? Will carers be accused of fabricated illness? Please. This. Must. End. Now.

Today is the day to remember those with severe and very severe ME (Myalgic Encephalomyelitis). You are not forgotten. We will keep working toward solutions. 💕

On #SevereME day, i pay tribute to my daughter, and all those ME patients hidden away in darkened rooms 🫂💙. We fight on, another year older, supporting biomedical research. @invest_in_me (Invest in ME Research) 🇪🇺