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#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
PwME 4 bioMEdical research retweeted
Mijn bijdrage in de Tweede Kamer bij het rondetafelgesprek Long Covid PAIS:
PwME 4 bioMEdical research retweeted
Happy to share our Comment article in @NatureMicrobiol. nature.com/articles/s41564-0… Acute infections can leave lasting imprints on chronic disease risk, health, and aging. We argue that vaccine evaluation should capture protection against both acute illness and its long-term consequences.
PwME 4 bioMEdical research retweeted
"Maar een andere angst is dat zij door #LongCovid haar identiteit kwijtraakt. Ze is al 2 jaar totaal aan bed en huis gebonden. 2 jaar op het leven van een meisje van 16 is heel erg veel. Dat krijgt ze gewoon nooit meer terug."
#PAIS
Uitzending @EenVandaag
eenvandaag.avrotros.nl/artik…
PwME 4 bioMEdical research retweeted
Mijn leven voor ME en sinds ME. Hoewel ik mij meer in het donker begeef dan op de foto.
Inzending voor de PAIS Protestwake vandaag.
#PAISprotestwake #pwme #myalgicE #millionsmissing #severeME
PwME 4 bioMEdical research retweeted
"Al vier jaar ligt ze dag en nacht op bed, licht en geluid verdraagt ze nauwelijks. Ze is 34 jaar en ze heeft om euthanasie gevraagd. De afgelopen maanden schreef ze haar eigen begrafenisspeech, ..."
#PAIS #PAISprotestwake #PAISinZicht
archive.is/Me6cJ#selection-1…
PwME 4 bioMEdical research retweeted
Yesterday we held a beautiful PAIS Protest Vigil in The Hague.
We called for long-run research funding like a Decade Against PAIS.
500 people showed up, we made the evening news, were covered in the major newspapers, and had politicians attend!
It was also beautiful 🕯️
1/7
PwME 4 bioMEdical research retweeted
🧵 Alemania lanza un plan histórico contra el COVID Persistente y la EM/SFC 🇩🇪👇
El Ministerio Federal de Investigación de Alemania (BMFTR) ha publicado las directrices oficiales de su Decenio Nacional contra las Enfermedades Postinfecciosas:
🔬 1. ¿Qué investigará? • Mecanismos biológicos del Síndrome Post-COVID y de la Encefalomielitis Miálgica / Síndrome de Fatiga Crónica (EM/SFC). • Persistencia/reactivación viral y disfunciones inmunitarias, metabólicas, cardiovasculares y del sistema nervioso autónomo. • Comparación mecanicista entre el Post-COVID (SARS-CoV-2) y la EM/SFC desencadenada por otros virus (EBV, gripe, CMV).
🩺 2. Fenotipado riguroso y síntomas clave • Exige usar los criterios internacionales CCC (Canadian Consensus Criteria) e IOM (Institute of Medicine). • Enfoque prioritario en los síntomas cardinales: Malestar Post-Ejercicio (MPE / PEM) y POTS (Síndrome de Taquicardia Postural Ortostática). • Estratificación obligatoria por sexo, edad y comorbilidades.
🛏️ 3. Pacientes como co-investigadores (¡Incluye a encamados!) • Integración real de pacientes y organizaciones desde el diseño de las preguntas de investigación hasta la difusión. • Exigencia explícita de incluir a pacientes graves, confinados en el hogar o encamados (homebound / bedridden), garantizando la financiación para la toma de muestras y logística domiciliaria.
💶 4. Financiación masiva y plazos • Cobertura del 100% para universidades e institutos de investigación + 20 % de bonificación (Projektpauschale) para costes indirectos. • Umbrales por proyecto: hasta 55 M€ (investigación básica), 35 M€ (industrial) y 25 M€ (desarrollo experimental). • 🗓️ Plazo límite para solicitudes preliminares (Projektskizzen): 27 de enero de 2027.
💡 Un hito internacional: Establece un estándar científico al combinar investigación de precisión, comparación directa con la EM/SFC e inclusión real de pacientes severos.
📌 ¡Comparte y difunde para dar visibilidad a este avance en la investigación pública
PwME 4 bioMEdical research retweeted
🧬 Excited to introduce @ImmunoThings , my new science communication project!
Through scientific animations, I’ll explore how our immune system works and how diseases like ME/CFS, Long COVID and autoimmune conditions develop.
I’ll be sharing more videos soon. Hope you enjoy them! 🩵
-X: xitter.cf/immunothings/status/21…
-Instagram: instagram.com/reel/De7g6mLt2…
🧬 Your immune system is full of incredible secrets… and we’re just getting started!
💡 Follow @immunothings to discover more ImmunoThings!
PwME 4 bioMEdical research retweeted
BBC Sport approached @number10gov for a response to my letter to @andyburnham . The @DHSCgovuk responded and unfortunately this statement isn’t anything we didn’t already know. There are also fundamental inaccuracies within it.
Please also bear with me; I’ve had an extremely large amount of messages and I’m operating with a very limited capacity. @Ed_Miliband @tessamunt @JoPlattLeigh @KatieFalkingham @BBCSport @BBCNews @UKLabour @ThereForME_UK @YvetteCooperMP
PwME 4 bioMEdical research retweeted
Did you know that in the incredible Invisible Illness TOPx @HHSGov Tech Sprint, our team is the only one with a core microscopy component? Please register to vote! invisibleillness.crowdicity.… or learn more at: talresearchgroup.mit.edu/mae…
PwME 4 bioMEdical research retweeted
MICROSCOPY.
Making the invisible visible since 1590.
(Yes, those little white balls are actually immune cells flowing through the tinniest blood vessels! Imaged painlessly, non-invasively through the skin)
PwME 4 bioMEdical research retweeted
The Association of Youth Law Attorneys says the government is neglecting its legal obligation to care for children with #LongCovid.
I totally agree, and this is something that's been going on with ME #kidswithME and IACI/PAIS for decades.
Source: Eenvandaag 23-10-2026
PwME 4 bioMEdical research retweeted
Reminder: Solve’s Ramsay Research Grant Program is open through Friday, Nov. 13! Know an ME/CFS or Long Covid researcher who should apply? Share this with them.
Learn more and apply here:
solvecfs.org/research/ramsay…
ALT Ramsay Research Grant Program accepting submissions with awards up to $150,000, deadline Friday, Nov. 13.
PwME 4 bioMEdical research retweeted
1) Another interesting presentation at the 2026 PRIME International Consortium by Dr. Matthias Wielscher.
He only talked about this briefly but it looks like his team did an analysis of rare mutations using the All of US and UKBiobank cohorts (DecodeME used common variants).
PwME 4 bioMEdical research retweeted
Incredible new paper from PLRC member @chloedecanson:
"I present a case study, that of myalgic encephalomyelitis... the medical aspects of the illness are on the whole better understood by sick people than by their doctors." 1/
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Bc the mechanisms that ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack
ALT Screenshot of the header of a published paper: Studies in History and Philosophy of Science Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis Chloé de Canson
PwME 4 bioMEdical research retweeted
🏃♂️ Running 42 km for those who struggle with even the smallest physical exertion! What an amazing initiative! Four friends are running a marathon to raise funds for our research into muscle dysfunction in ME/CFS. Will you support them?
👉 steun.vu.nl/sponsorloop
#MECFS
PwME 4 bioMEdical research retweeted
Ooh, ooh, do ME/CFS, @parmita!
Nanoneedle 2.0.
Use ME/CFS patient cells, stress with sodium chloride, watch the trajectories of collapse, test the meds that they have found rescue the cells, get those trajectories, build the model, find all the drugs. Everyone wins. How can we make this happen?
I volunteer to give you my own PBMCs. 😆
Nanoneedle: pnas.org/doi/10.1073/pnas.19…
PwME 4 bioMEdical research retweeted
One of the most exciting analyses is the correlation between LongCOVID and chronic fatigue (or ME/CFS?), fibromyalgia and chronic pain - all of which have rg > 0.7.
PwME 4 bioMEdical research retweeted
So excited to see the new paper from @23andMe on #LongCOVID out! Three new hits of which two are at loci earlier associated with COVID-19 (ABO and HLA loci), and one additional super exciting at the BPTF locus. Congrats @ninaadsc ! medrxiv.org/content/10.1101/…
PwME 4 bioMEdical research retweeted
1/6 New in @NatureMedicine: genetic study of #fibromyalgia in 2.5 million people across 11 cohorts.
We identified 26 risk loci and found strong genetic evidence pointing to the central nervous system.
nature.com/articles/s41591-0… @michaelwainberg @SinaiHealth @helsinkiuni @fredhutch
