Every night I die quietly in my bed, and every morning I wake up to the funeral of myself.
Joined December 2025
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MECFSsince2011 retweeted
If done right, this could turn out to be the most consequential single project in ME/CFS history.
I'm glad to see Germany investing in large-scale biomedical research and shared research infrastructure. Beyond sequencing, they also plan deeper molecular profiling in 4,250 people with postinfectious illnesses and 4,250 controls. Some of those analyses remain unspecified. Looking forward to seeing what they do here.
I hope NAKO-PAIS will establish strong scientific links with the UK's DecodeME and the EU-funded DISCOVER-ME, so their data and findings can inform one another.
I also hope Germany will include brain and tissue banks in its National Decade Against Post-Infectious Diseases, together with this project it would create a very strong 'base layer infrastructure'.
bei Nako- Pais geht es hauptsächlich um Ganzgenomsequenzierung- so wie ich das aus dem Text verstehe werden 25.000 gesunde Kontrollen und 20.000 Menschen mit Postinfektiösen Erkrankungen sequenziert.
Super, dass das jetzt in Deutschland passiert.
gesundheitsforschung-bmftr.d…
MECFSsince2011 retweeted
Thank you to Beth for speaking out. I've had ME for 35 years, I was 27 when I was diagnosed. Like so many with ME my life was decimated, and 35 years later we are still waiting for treatments, understanding & support. We can't lose another generation to this devastating illness.
MECFSsince2011 retweeted
As Dobbin has stated, "CFS" is an insult that downplays the severity of the illness. It's also an enraging reminder of medical misogyny, neglect, & abuse. It was only the common name for the illness for a short time decades ago. Please exclusively use the widely accepted term.
ALT The condition is also known as chronic fatigue syndrome (CFS), a label Dobbin strongly rejects. As a former athlete who balanced working eight-hour shifts with training before turning professional, she says she has "known fatigue my whole life" and believes the term fails to capture the severity of the illness. "I wish it was just fatigue, that would be a walk in the park," she says. "It's so much more than that. If I thought of fatigue in my top 20 symptoms it might just make the cut." Instead, she says, it feels like her entire body "is shutting down; it feels like you are a few days from death". https://www.bbc.com/sport/athletics/articles/crd6dj26v4e4o
MECFSsince2011 retweeted
Hi everyone, we’ve been working on something 🙏🏼 I’ve written a second letter to Andy Burnham, alongside 360 sports people, to urge him to meet with me and fund research into my much neglected health issue which impacts millions of others.
I can’t believe 360 people signed in just 1 week, so many amazing names and messages still coming in of people wanting to add theirs (so feel free to message to add yours, we’re keeping on the pressure!!!)
The list includes 114 Olympians, with 77 medals between them (and that’s not even including Worlds and Europeans 🤯). Also some huge names from football and many other sports!!
Thank you SO much to everyone that signed, I can’t tell you how much it means to me when I’m truly at rock bottom ❤️❤️❤️
I know everyone wants their issues taken seriously, but this has been neglected like nothing else. WE HAVE 0 APPROVED TREATMENTS!!! Please listen 🙏🏼 @andyburnham @number10gov @UKLabour @DHSCgovuk
MECFSsince2011 retweeted
I’m weary of #ME researchers having conferences, showing slides, having convivial chats, posting that they have been discussing some exciting ideas etc. and nothing at all changes for ME patients. We live or die in our beds while researchers chat amongst themselves. It’s urgent.
MECFSsince2011 retweeted
Unglaublich! 💙
Rund 11.000 Euro für die ME/CFS-Forschung. Und es wird weiter gesammelt.
Am 23. Oktober haben sich Schülerinnen und Schüler vom Bundesrealgymnasium Seekirchen, der HAK.HAS Neumarkt und der HLW Neumarkt am Wallersee gemeinsam auf den Weg gemacht: von ihren Schulen bis nach Zell am Wallersee. Jeder Schritt für Menschen mit ME/CFS.
Danke an alle, die den Walk organisiert haben, die mitgegangen sind und die für Essen und Getränke gesorgt haben.
Allein in Salzburg leben rund 5.000 Menschen mit ME/CFS, darunter auch Kinder und Jugendliche. Jeder Euro unterstützt die Forschung, damit für sie und alle anderen Betroffenen eines Tages wirksame Behandlungen entwickelt werden können.
Gespendet werden kann noch bis Ende November:
WE&ME Stiftung
IBAN: AT95 2011 1842 5439 4200
BIC: GIBAATWWXXX
Verwendungszweck: Spendenlauf Wallersee
Den Endstand teilen wir anschließend mit euch.
Den Beitrag aus „Salzburg heute“ seht ihr hier: on.orf.at/video/14344786/161…
Fotocredit: julescheler.com/
MECFSsince2011 retweeted
@DrFrancesRyan’s post when Miranda’s memoir came out explains why we are worried. She bears a responsibility to all #ME patients as she is in the news again, to explain that she is one of less than 5% that recover and 25% remain severely ill despite trying everything to get well
Miranda Hart’s new memoir on chronic illness seems very well intentioned but this pseudoscience is worrying. If you’re writing a book after you’ve recovered, there’s a particular responsibility to be accurate to readers who are desperate to recover too.
ALT Hart goes further. She writes of “the clear science” linking chronic stress to the onset of long Covid, ME and chronic fatigue syndrome. Yet the science on long Covid is very new and often divided. Hart says, of all these conditions, “the cause and the solution are in the brain’s heightened stress response.” She leaves no room for dissent. Where has this assertion come from? Without careful citation of sources, as, say, one finds in Dr Chris van Tulleken’s recent Ultra Processed People, we have to take Hart’s word for it.
MECFSsince2011 retweeted
1,250 students walking and running around Wallersee for ME/CFS research and WE&ME? Absolutely incredible!
This is what we need much more of to make change happen: young people bringing their energy, compassion and determination to our cause. Showing up for people who so often physically cannot.
As someone who has spent ten years confined to a mattress in one room because of ME/CFS, I am more grateful than I can express.
Everyone at @weandmecfs feels deeply honored!
To every student, teacher and organiser: thank you. Please know how much this matters. 💙🙏
salzburg.orf.at/stories/3376…
🤖 Made with AI
MECFSsince2011 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
MECFSsince2011 retweeted
“Try not to make chronic illness your identity” like it doesn’t dictate your life with symptoms 24/7 and destroys everything you can do. Ok. #longcovid #mcas #chronicillness
MECFSsince2011 retweeted
The problem w Miranda Hart isn’t that she „overcame“ her illness or that people are begrudging her. It’s that she’s on national television, telling everyone that she walked her way out of it. That echoes what garner and all the other bps people say. It can be harmful for a lot.
MECFSsince2011 retweeted
Am Samstag, den 10.10.26, fand Yvonnes Charity-Flohmarkt statt. Die Veranstaltung war ein großer Erfolg und viele schöne Fundstücke haben glückliche neue Besitzer gefunden. Insgesamt kamen 3.476,20 € zusammen, die der WE&ME-Stiftung und damit der ME/CFS-Forschung zugutekommen.
Herzlichen Dank an Yvonne für die tolle Organisation und Catherine, die beim Spendensammeln unterstützt hat. Ein großer Dank gebührt auch Thomas, Dominik, Isabella, Lukas K., Lukas R., Antonia, Rick, Ksenia, Slavko und Gabriele, die mit ihrer tatkräftigen Unterstützung vor Ort beim Auf- und Abbau sowie beim Verkauf geholfen haben.
📸 Klaus Ranger
MECFSsince2011 retweeted
Remarkable things are happening on Science4ME.
As part of the process developed by @weandmecfs with Science4ME, researchers who have advanced to the second round of the WE&ME Projects Call are voluntarily presenting their proposals for discussion with forum members.
They’re testing their ideas against the knowledge, experience and questions of scientifically minded patients.
If you’re scientifically minded yourself, have expertise in research, methodology or a relevant field, or bring an informed patient perspective, consider joining. Your experience and questions could help strengthen ME/CFS research.
The forum is sometimes criticised as “negative” or “pedantic”. That’s hilarious, because people who question assumptions and scrutinise details are exactly those you should want to test your ideas with if your goal is scientific progress. It’s not a panacea, but it should certainly be part of the process.
MECFSsince2011 retweeted
"Severe people may hold answers to Long COVID. They must be included in research."
The article I wrote for @thesicktimes was cited again in their latest piece. Thank you for highlighting this important issue, since the most severe patients are so often ignored.
thesicktimes.org/2026/01/13/…
Whitney Fox argues that advocates, clinicians, and researchers must prioritize prevention and demonstrate the gravity of infection-associated chronic conditions like Long COVID by providing and wearing masks at public events. thesicktimes.org/2026/10/19/…
ALT An audience at a conference wear masks while watching a presentation. The text reads, "The Sick Times. Conferences and advocacy events for IACCs must require masking. By Whitney Fox. Commentary."
ALT Many people with ME risk permanent deterioration to participate in advocacy. The least organizers and science conferences can do is protect us from further disablement from preventable infections by requiring masks.
MECFSsince2011 retweeted
I can’t believe how it’s “normal” to feel like you are dying in any moment with this illness. How we can be feeling like this and there is nothing to do, nobody helping? The suffering it’s so intense that its makes me want to stop living for real. Please I don’t want to feel this