PwME 4 bioMEdical research

#MECFS is such a punishing & invisible illness which has nothing to do with fatigue. It’s a neuro-immuno-MEtabolic systemic dysfunction. It takes so much fortitude, endurance and courage to survive 24/7 on the edge of an abyss. We #PwME are reverse marathoners. #MEAwarenessHour

Too Many Of Us Are Dying I see people protesting the rights of many marginalized groups and important issues. I see people up in arms over injustices faced by people all around the world…BUT WE ARE DYING. Not to mention suffering endlessly from symptoms that are often only…

For the next few weeks I’ll share stories from my photo project about #MECFS Before Hillary became ill she was an entrepreneur, running companies, sponsoring motor racing, making music and living a full life. Updates on exhibition & book: tinyurl.com/58khuv8z #MEAwareness

This excerpt from the ME Delivery Plan shows the inherent disease inequity for ME. Can you imagine saying to severe Parkinson's patients - sorry we are not going to provide an NHS service for you because it's not: 👉 Practically feasible 👉 Financially viable 👉 Affordable 😳

My daughter died from ME. This new plan fails her and others like her. thetimes.com/uk/healthcare/…

ME Delivery Plan is out & #pwME are let down again. "Exploration of a specialised service for very severe ME” and Ashley Dalton... After three years of research and consultation, you have to wonder how much further exploration is needed" thetimes.com/article/e4a603…

Karen Hargrave - @KarenLHargrave on BBC The World at One talking about her husband, James with severe #MECFS and the new government delivery plan which lacks any concrete tangible solutions, also includes a representative from BACME. youtu.be/R6AReGLoy4o?si…

“I honestly just did not realise that it was possible, in the UK in 2025, to be as sick as my husband is & for there to be basically no specialist NHS services to provide any kind of support” Our co-founder @KarenLHargrave on Radio 4 WATO 👇 (Recording via @ABrokenBattery)

Doctors to be trained on ME in NHS plan to transform care “I am painfully aware of patient safety concerns, and even tragically avoidable deaths of people with ME/CFS, in England. These must become never events,” she wrote. thetimes.com/uk/healthcare/…

Thank you @KarenLHargrave of #ThereForME for commenting so strongly on the DHSC Plan for #ME published in The Times today.

‘A plan without any actual plan’ ⁦@TimesONeill⁩ Thank you for precisely summing up today’s DHSC Delivery Plan for #ME. thetimes.com/article/e4a603…

Grateful for the opportunity to meet President Gracemarie Bricalli and European ME Alliance (EMEA) reps ahead of #RC74CPH. Non-state partners like #EMEA are crucial in our @WHO_Europe mission to achieve Universal Health Coverage, ensuring no one is left behind. EMEA's recent…

On #InternationalMEawarenessDay the European ME Alliance member societies are extremely grateful to Dr. Kluge @hans_kluge for his support & meeting with us in Oct 2024 to discuss future collaboration to address this devastating illness x.com/hans_kluge/sta… #mecfs #MedEd