The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx). We're letting you know the timing in advance so you can pace beforehand. Thank you to our participants & supporters.

www.change.org/p/save-savan... www.change.org/p/the-nhs-mu... www.change.org/p/save-karen...

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights

Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!

@rthonwesstreeting.bsky.social I can't find Ashley Dalton on here so tagging you in with total support for what you have had to do. Hope BMA negotiations are going better.

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

10 minute out of 65 minute interview with CEO Linda Tannenbaum on the Make Visible Podcast transcribed . #MECFS biomarkers and the OMF BioQuest Project to find a ME/CFS Biomarker Signature/Subsets is discussed. mecfsdiagnosticbiomarkers.substack.com/p/make-visib...

mecfsdiagnosticbiomarkers.substack.com/p/replicated... Replicated blood biomarkers for ME/CFS? ME/CFS needs well-defined, quality cases stored in Biobanks #MECFS #pwME #MillionsMissing #Biomarkers

Did you wake up with a craving for a new ME/CFS book with dozens of chapters about research methods? Well, it’s your lucky day link.springer.com/book/10.1007...

Today is Blue Sunday for #MECFS Support #MECFS Biomarker projects directly. Please donate to the largest ME/CFS Biomarker study Help make a ME/CFS diagnostic test a reality tinyurl.com/BlueOMFBioQu... #pwME #MillionsMissing #BlueSunday

I have #SevereMECFS. I am bedridden. I can no longer speak. I know that each day I am here because #Science ignores the biological and immunological underpinnings of disease in women. Right now, I am watching a lecture series in Undergraduate Immunology by @bioprofbarker.bsky.social line by line.

The largest #MECFS Biomarker study - BioQuest Patient selection will be based on the Canadian Consensus Criteria (CCC) and patients will be clinically diagnosed by physicians at Harvard and Uppsala. Read More and Donate to BioQuest #Fundraising mecfsdiagnosticbiomarkers.substack.com

Open Medicine Foundation BioQuest update. OMF has raised $950,000 of the $2.4 Million dollars needed to analyze 1200 samples in the largest scale #MECFS Biomarker study They have raised 40% of their goal. mecfsdiagnosticbiomarkers.substack.com/p/omf-bioque...

mecfsdiagnosticbiomarkers.substack.com/p/2025-mecfs... Your pocket guide to potential Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Diagnostic Blood tests Get information on the 8 #MECFS diagnostic blood tests in development and more! #MECFS #MyalgicEncephalomyelitis #pwME

Exclusive Interview by @mecfsnanoneedle.bsky.social: OMF Founder and CEO, Linda Tannenbaum, on the Large-Scale ME/CFS Biomarker Study (BioQuest)!🌟 👉 Read the interview: ow.ly/FT1i50UOFII 💙 Donate to BioQuest: ow.ly/wEHU50UOFIJ #mecfs #mecfsbiomarker #pwME

mecfsdiagnosticbiomarkers.substack.com/p/omf-bioque... Open Medicine Foundation's BioQuest: Welcome to the Future Interview with OMF's CEO Linda Tannenbaum about the largest #MECFS Biomarker Study #MECFS #pwME #MillionsMissing #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

67 Million people have #MECFS worldwide #MECFS has double the disease burden of HIV with no treatments. A diagnostic blood test would transform medicine for #MECFS patients. Please #Donate to the largest #MECFS biomarker study #SocialGood #Change www.omf.ngo/me-cfs-new-b...

Worth a read

I am excited about all the various #MECFS diagnostic blood tests in development - but my hope for 2025 is BioQuest #OMFBioQuest. We need to focus on funding those 1200 samples!!! www.omf.ngo/me-cfs-new-b... @openmedf.bsky.social

We started 2024 with 3 #MECFS diagnostic blood tests in development and we end 2024 with 7 diagnostic blood tests in various stages of development. The most notable thing to happen is Open Medicine Foundation's BioQuest project www.omf.ngo/me-cfs-new-b.... @openmedf.bsky.social #MECFS #pwME

An #MECFS patient does not need professional help to move more. An #MECFS patient needs professional help to explain to friends and family that they need to move less and rest until pharmacological interventions for low ATP, T cell exhaustion and mitochondrial dysfunction are found #MillionsMissing

You can have severe fatigue and cognitive dysfunction from another condition, but that doesn’t mean you have PEM. There’s way more to it and failing to acknowledge that leads to over-simplification. I can’t tell you how discouraging it is to see people get this wrong so publicly as often as they do.

Like, PEM isn’t a feature of other conditions. It’s something we see in ME. That’s basically it. People may *screen positive for bits and pieces* of PEM in other conditions. People may have ME *and* another condition, but it’s very important we’re clear that PEM isn’t a part of other conditions.

The best way to help #MECFS patients right now is to donate to BioQuest. A large-scale Biomarker study that will analyze 10,000 proteins and metabolites in 1200 samples when fully funded. It is 1/3 funded right now, let's fully fund it. #philanthropy #fundraising www.omf.ngo/me-cfs-new-b...

In less than a year - Trump has gone from being a convicted felon & rapist to President Elect & Time Person of the Year My heart is breaking for women all over the world I think of Gisele Pelicot & everything she’s done to bring accountability to rapists. Then this happens No wonder we’re angry

www.omf.ngo/me-cfs-new-b... @openmedf.bsky.social announces 1/3 of funding of most ambitious groundbreaking #MECFS diagnostic biomarker study to date! 1200 samples for the total project. 600 ME/CFS samples in total Let's get this funded to 100% so we can get these 1200 samples analyzed!

Did? “Did” we? Covid still regularly kills at least several hundreds of people a week here in the U.S. I’d venture we still do.

A #MECFS patient does not need professional help to move more. An #MECFS patient needs professional help to explain to friends and family that they need to move less and rest until pharmacological interventions for low ATP, T cell exhaustion and mitochondrial dysfunction are found #MillionsMissing

Incredibly honored to have received the Mayo Model of Care Award tonight. I am so thankful to my friends and colleagues for their support of me and the patients we serve 💙

It’s sort of remarkable that ways of tracking and managing one’s own symptoms and function that seemed rather longstanding in people with ME/CFS also seemingly fall out of the sky when they become commercially viable. 😄

Patient-Reported Treatment Outcomes in ME/CFS and Long COVID: A preprint was just released, including analysis of over 150 treatments and their perceived effect on symptoms, as reported through the TREATME survey by over 3,900 patients with #MECFS and #LongCOVID. 👉 www.omf.ngo/patient-repo...

In a world full of villains, lies, and corporate greed - just keep to the facts, and tell the truth in your corner of the world. Truth based on objective evidence and not ideology.

“Our failed pandemic response means the government move to ban masks doesn’t surprise me. It’s the next logical step in what feels like a global eugenics plan” As assisted dying debate rages on - I’m sharing an article about mask bans, eugenics & how the disabled are treated. We are NOT expendable

A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise As ever, the devil is in the detail TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted (Too bad they hid the crucial deets in an online supplement!) cc #pwME #MECFS

The problem with migrating to Blue Sky is that when the BPS mafia spreads misinformation on PEM, LongCovid and ME/CFS in the BMJ and on Twitter - there are not enough people to fight back on Twitter. 😔 PG needs to be community-noted today.

www.nature.com/articles/s43... From Dr. Armstrong @openmedf.bsky.social on metabolomics in UK Biobank Self-reported #MECFS patients. What I want to see is a biobank that runs 2-Day CPETs @sunsopeningband.bsky.social on #MECFS, MS, Depression, and Anxiety patients doing proteomics and metabolomics.

Amazing work, Tina. Your passion for this field really comes through.

Tomorrow, November 21st, is my 5th year anniversary since I last saw the sun or felt it on my face. It will be 5 years since I was last outside because I went to an eye appointment (I also have glaucoma). I know many of those reading this know what this is like. #SevereMECFS

We're sad to announce that #ThereForME has suspended its collaboration with the ME Association. We truly hope that we can collaborate again when the concerns raised by the community have been adequately addressed.

I have two more talks this week. Folks, I am tired beyond a healthy person's conception of the word. 🥄 Send spoons! And fortitude 💪

Are your donor dollars supporting #MECFS orgs that prioritize your priorities? CEO Linda Tannenbaum started Open Medicine Foundation in order to find a diagnostic blood test for ME/CFS so that patients could be diagnosed earlier and with accuracy. www.omf.ngo?form=TGN2024 #MECFS #MillionsMissing

Thanks for noticing.

Working in the Long Covid/ME space in the UK is a lonely place. As I reflect in taxi home on the last 48 hrs, I don’t regret a single moment. I genuinely believe that the group of people I was with yesterday can change the world for kids with these illnesses. There’s power in global collaboration.

Not be be excessively grim, but more than likely “MAHA” means CBT and exercise the “tired people,” just so we’re clear. The remaining RECOVER project funds, future research funding in infection-associated chronic conditions, and the Advisory Committee on Long Covid are in serious jeopardy right now.

First Long COVID paper accepted for publication!

Anthony #Fauci's Trillion dollars a year mistake in not studying #MECFS with ImmunoBiology in 1984, and Dr. Monica Bertagnolli's mistake in not ordering a call for ME/CFS diagnostic biomarker grants to give drug companies what they need to find a path to treatments for #LongCovid.

If they had taken ME/CFS seriously from the beginning instead of stigmatizing it — how many of us would have our lives back? It’s really really disturbing. #LongCovid #MECFS #PostViralIllness

I finally found a chart I'd been looking for in prep for @johnvsjonvsme.bsky.social Scary Science! 'Replicated Findings in ME/CFS and Long Covid' by German Association for #MECFS. Reduced cerebral blood flow seen in '92, autoantibodies '03, hypometabolism of CNS '98, etc. #GreatestMEdicalScandal

Don't worry about the "Invalid handle" error messages, everyone! Nothing is wrong with your account—that just means some servers went down, and as soon as they're back up that will resolve automatically.

Nearly 20 home visits to people with ME done in the last two weeks (and a few with Long COVID as well). Many more to come. Thank you for your generosity. #MECFS #LongCOVID