I have devoted my entire life and career to advocating on behalf of Alzheimer's patients, their families, and their caregivers. I've managed treatment plans for thousands of patients and conducted hundreds of social initiatives. Now I am the mother of a 14-year-old with

Sharing would be much appreciated 🙏 It’s both english/german. There is a F.A.Q. section on the fundraiser, why a second surgery is needed. Insurance still not covering surgery or ambulance. #mecfs #eds #mcas #cci gofundme.com/f/cgexg-hope-f…

Dear Bill Gates , here is my letter to you.

Would love to connect with Bill Gates to discuss ME/CFS & Long COVID. Just 1% of his foundation’s intended funding would be over 50x current ME/CFS funding. If anyone in the #pwME #MECFS #LongCovid community has a connection to the Gates Foundation, please reach out!

Dear Bill Gates, ME/CFS is the most underfunded disease in the world with the lowest quality of life. Can you help us? There is no cure. We are waiting in our beds to die

I spoke about #MECFS beyond close friends for the first time. The response was overwhelming — even major media reached out. If you haven’t seen it or feel like sharing it again, every repost helps. Thank you so much! #ChronicIllness #LongCOVID GoFundMe gofund.me/23beee59

Brad Brad curious to know your views on role neuro-immune system ? Think: - microglial activation - damaged BBB - certain cytokines signalling sickness behaviour And/Or dysfunctional brain metabolism ? - excess lactate brain - glutamate Excitotoxicity - hypoxia

🇩🇪 omgerekend naar 🇳🇱 De kosten van #ME & #LongCovid : ± € 13.000.000.000 per jaar❗️* Waar blijft ons debat❓ Julian Bushoff Mirjam Bikker Jimmy Dijk Harmen Krul Henri Bontenbal Wieke Paulusma Mariska Rikkers-Oosterkamp Agnes Joseph Ines Kostić 🌏🕊 #MEAwarenessDay * mecfs-research.org/costreport-lon…

Am heutigen ME/CFS-Tag nehmen weltweit Menschen an Aktionen teil, um auf die Situation von jenen aufmerksam zu machen, die aufgrund ihrer Erkrankung nicht teilnehmen können. Ö. Ges. für ME/CFS 1/5

Online data Survey Rapamycin - ME & Long Covid (PEM) - Sources: Online polls, Patient anecdotes etc - incl poll Christoph Ströck @DjeGZ33 Results N= 121: - ✅ 45% positive - ♾️ 34% nothing - ❌ 21% negative *Note: for severe the outcome is more negative

For anyone interested to discuss with their doctor this is the Rapamycin protocol presented yesterday by Michael Peluso, MD At the International #MECFS Conference 2025 Berlin

The Norway study gives great hope that B and plasma cell depletion is effective in ME/CFS Roche Deutschland Sanofi Deutschland Janssen-Cilag Amgen 🧪🔬🧬 Neuraxpharm Spain This is an indication with highest medical need, get involved now if you want to take part in the development of these drugs.

As presented at the International ME/CFS Conference 2025 #mecfsconference, in the Amsterdam UMC we will start a clinical trial testing immunoadsorption in Long-COVID. More information about that in this movie: youtube.com/watch?v=fE7AQU… #LongCOVID #MECFS ZonMw

The result of medical neglect #MyalgicEncephalomyelitis #Neurosjogrens #väsymysoireyhtymä #medicalabuse

Doodzieke patiënten opdringen dat ze niet ziek zijn, voor het leven uitsluiten van sociale zekerheid, en nu het bekender wordt de NOS aanvallen. Ze durven wel die CGT(Cognitieve gedragstherapie)-adepten. Tijd dat media doorpakken op dit schandaal. #mecvs nvk.nl/nieuws/nvk-uit…

Paul Keeble ME/LC I mean, in Germany and Norway we have scientists trialing serious immune modulating treatments. But most countries are still trialing drugs that are already widely used in patient community Or still debating if CGT is good or detrimental for ME (the Netherlands 🙄). Sigh…

If you’re someone who researchers, shares your story, or advocates and you sometimes also feel drained by the negativity, please remember: They’re not the majority. Your positive impact is bigger than you realise.

Dear America, My name is Whitney Dafoe.  I have a chronic illness and depend on Medicaid to stay alive.  The "Big Beautiful Bill" that Trump signed into law on the 4th of July will take away insurance from an estimated 17 million people (1), mostly from people on Medicaid.  I