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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 17/08/2026

It's not a cornfield in Iowa, but "If You Build It, They Will Come." seems appropriate right now. #Genomics #MECFS Thank you to Dr. Chris Ponting, PhD @cgatist.bsky.social and Action for ME @actionforme.bsky.social .

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 29/07/2026

OMF has over 35 active research projects—including those investigating treatments—which yield a lot of data that can be used to help identify how survey answers might correlate with clinically meaningful results. Read more about OMF’s research portfolio on our website: www.omf.ngo/the-end-mecf....

omf.ngo

The End ME / CFS Project - Open Medicine Foundation

Discover OMF's End ME/CFS & Long COVID Project: Advancing the latest research in chronic complex diseases. Learn about groundbreaking studies here.

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Tom Kindlon @tomkindlon.bsky.social · 23/06/2026

PRIME International Symposium www.actionforme.org.uk/register-for... www.actionforme.org.uk/wp-content/u... www.tickettailor.com/events/unive... Screenshot from latest Science for ME weekly update #MEcfs #PwME

PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research.
9 am on 28 September to 2 pm on 29 September at the John McIntyre Conference Centre in Edinburgh, with online attendance also available.
"The PRIME Symposium will see the launch of the new International Genetic Epidemiology of ME/CFS Consortium, as well as provide a platform for Early Career Researchers and the Patient and Public Involvement Research Involvement Hub to present exciting new research and supporting activities."
Article | Preliminary programme | Registration | Thread

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Chris Ponting @cgatist.bsky.social · 05/06/2026

Final #DecodeME analysis has been stalled since 22 April when UK Biobank removed access to its compute for all users. Yesterday, they wrote again but without a timetable for re-opening, just saying that this timetable would be available in June. We will complete our analyses asap thereafter. #MEcfs

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 03/06/2026

OMF’s large-scale biomarker project, BioQuest, is working to incorporate subtype identification into its study. Read more about the project on our website: www.omf.ngo/bioquest-lar.... #MECFS

omf.ngo

Large-Scale Biomarker Project (BioQuest) - Open Medicine Foundation

Learn more about BioQuest, a large-scale biomarker study to identify a biochemical signature for ME/CFS.

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 03/06/2026

As ME/CFS is a heterogeneous disease, it’s likely that there are subtypes of the disease to identify. Subtyping might be particularly important for helping guide treatments.

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Chris Ponting @cgatist.bsky.social · 12/05/2026

The UK Government award covers the whole genome sequencing of 6,000 #pwME from @decodemestudy.bsky.social project, but no funds for the people needed to do the sequencing. We already benefit greatly from a kind donation from WE&ME, but further amounts would help greatly🙏 The total project is £20m.

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 15/05/2026

Linda Tannenbaum, Founder and CEO of OMF, will deliver the inaugural lecture of Faculty of Medicine of the University of Lisbon’s new Open Lectures series on May 25.

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 12/04/2026

One of the things I wish is that we could stop saying, "ME/CFS is not a psychological disease". It's a defensive position. It reinforces the belief that it is. What we need to say is: "ME/CFS has a biological basis, the 116 blood molecule differences is one of those biological differences."

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Mar Hicks @histoftech.bsky.social · 06/02/2026

No joke: I got angry hate mail today for writing an obituary of a Black woman scientist—because the person felt she did didn’t deserve the recognition. Which just makes me want to share it again: www.nature.com/articles/d41...

nature.com

Gladys Mae West obituary: mathematician who pioneered GPS technology

She made key contributions to US cold-war science despite facing huge barriers as a Black woman.

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Katy B @katybrc.bsky.social · 01/02/2026

@tessamunt.bsky.social @joplatt.bsky.social @georgemonbiot.bsky.social I'm sure you're all aware of this case of yet another #pwME being seriously harmed while under @england.nhs.uk care. It also makes it very clear that there are very serious problems with BACME being involved in care of #pwME

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Chris Ponting @cgatist.bsky.social · 29/01/2026

Blood DNA residue of Epstein-Barr virus (which causes MS & IM) correlates with various diseases. Our genetics controls this amount www.nature.com/articles/s41... Caveat: positive results not relevant to #MEcfs due to researchers applying wrong codes, see www.sciencemediacentre.org/expert-react...

nature.com

Population-scale sequencing resolves determinants of persistent EBV DNA - Nature

Population-scale WGS reveals genetic determinants of persistent EBV DNA, linking immune regulation—especially antigen processing and MHC class II variation—to EBV persistence and heterogeneous di...

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Chris Ponting @cgatist.bsky.social · 29/01/2026

Your wish is our command! Next year, the PRIME network intends to organise a (hybrid) Symposium exactly on the topic of biomarkers and diagnostic tests. Who should we invite? #MEcfs bionow.co.uk/news/prime-b...

bionow.co.uk

PRIME – building infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis | Bionow

PRIME is a new MRC-funded project aimed at bringing together patients/patient groups, academic & clinical researchers and industry to make progress in the understanding and treatment of Myalgic Enceph...

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Chris Ponting @cgatist.bsky.social · 29/01/2026

We will be mindful of this: “In designing a study, a goal of ME/CFS researchers should be to determine if a significant result can actually inform disease mechanisms, or if it is simply a reportable difference between patients and controls.” VanElzakker et al. www.frontiersin.org/journals/neu...

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Chris Ponting @cgatist.bsky.social · 29/01/2026

Thanks again. I understand that the BioQuest data won’t be available for another 18 months or so. We will need to apply for data access then.

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The Canary @thecanaryuk.bsky.social · 22/01/2026

URGENT: An NHS hospital is starving a severe ME patient & has now stopped giving her fluids. Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk. @h-sharland.bsky.social has the story www.thecanary.co/uk/analysis/...

thecanary.co

An NHS hospital is starving a severe ME patient and has now stopped giving her fluids

Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk

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biometlab @biometlab.bsky.social · 10/01/2026

Really clear night. Got much better images of Orion nebula and Andromeda galaxy, M31, than posted last time. And took longer exposures. Enjoy

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DecodeME @decodemestudy.bsky.social · 04/08/2025

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.

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Michiel @murtoz.bsky.social · 31/07/2025

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

change.org

Sign the Petition

Save Savannah Victora-May - Prevent Another ME/CFS Tragedy

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sarah boothby @swastrosarah.bsky.social · 31/07/2025

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

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Michiel @murtoz.bsky.social · 31/07/2025

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!!!

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sarah boothby @swastrosarah.bsky.social · 31/07/2025

@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.

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sarah boothby @swastrosarah.bsky.social · 31/07/2025

@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.

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 15/07/2025

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...

Make Visible Podcast: July 14, 2025

Emily Kate Stephens interviews Linda Tannenbaum about OMF's BioQuest Large scale ME/CFS biomarker study

CEO and Founder of Open Medicine Foundation.
Leading Research. Delivering Hope.

MECFSDIAGNOSTICBIOMARKERS.SUBSTACK.COM

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 26/06/2025

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

Replicated Blood Biomarkers for ME/CFS?

ME/CFS need well-defined, quality cases stored in Biobanks.

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Daniel Missailidis, PhD @danielmissailidis.bsky.social · 16/05/2025

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...

link.springer.com

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

This book examines Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and techniques used to explore dysfunctional pathophysiology in patients.

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 18/05/2025

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

This Blue Sunday for ME/CFS
Support ME/CFS Biomarker Projects

Picture of blue and white teapot and cup and saucer

Donate OMF BioQuest
1200 Samples (600 ME/CFS Samples)
Analyzing 10,000 Proteins and Metabolites

https://tinyurl.com/BlueOMFBioQuest

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 28/02/2025

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.

"Every cell in a woman's body produces Xist," Chang said. "But for several decades, we've used a male cell line as the standard of reference. That male cell line produced no Xist and no Xist/protein/DNA complexes, nor have other cells used since for the test. So, all of a female patient's anti-Xist-complex antibodies - a huge source of women's autoimmune susceptibility - go unseen."

Dr. Howard Chang, PhD, MD,
Professor of Dermatology and of Genetics and a Howard Hughes Medical Institute investigator.
https://med.stanford.edu/news/all-news/2024/02/women-autoimmune.html

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 04/02/2025

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

OMF BioQuest
#MECFS Patient Selection

“The patients will be accessed using the Canadian Consensus Criteria and will have been diagnosed by physicians at Harvard Medical School and Uppsala University.”

CEO of Open Medicine Foundation Linda Tannenbaum

MECFSDIAGNOSTICBIOMARKERS.SUBSTACK.COM

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 30/01/2025

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...

Open Medicine Foundation announced it has raised $950,000 towards its $2.4 Million goal to fund the largest scale ME/CFS Biomarker Study
BioQuest
Screenshot of BioQuest funding: With two generous grants and additional funds from the OMF community, we secured $950,000- 40. per cent of our goal- to launch a large scale ME/CFS biomarker study BioQuest
Meter with 40 per cent Aquamarine filled out
Donate to BioQuest

Interview with Linda Tannenbaum about BioQuest
Link in Bio
MECFSDIAGNOSTICBIOMARKERS.SUBSTACK.COM

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 29/01/2025

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

mecfsdiagnosticbiomarkers.substack.com

2025: ME/CFS Diagnostic Biomarkers in Review

A ME/CFS diagnostic blood test Pocket Guide

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 28/01/2025

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

The image features Linda Tannenbaum, OMF Founder and CEO, wearing glasses and a blue top. The image includes a text overlay with the words "BioQuest Interview".

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 27/01/2025

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

Blue background. In the middle pictured is Open Medicine Foundation's Linda Tannenbaum. She has light brown hair. A kind smiling face. She is wearing glasses.

OMF BioQuest: Welcome to the Future

Email Interview with OMF's CEO Linda Tannenbaum about the largest #MECFS Biomarker Study

MECFSDIAGNOSTICBIOMARKERS.SUBSTACK.COM

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 02/01/2025

Worth a read

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 24/12/2024

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

Current ME/CFS diagnostic blood tests in development 2024:

1. tinyurl.com/OMFBioQuest
2. MicroRNAs (University of Montreal)
3. Electrophyisological properties of white cells (University of Surrey)
4. Red Cell Deformability (UC Davis)
5. Electrical Signature (LeHigh University)
6. Raman Spectroscopy (Oxford)
7. Molecular and Cellular Signature of ME/CFS (LaTrobe University)

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 22/12/2024

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

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Todd Davenport @sunsopeningband.bsky.social · 19/12/2024

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.

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Todd Davenport @sunsopeningband.bsky.social · 19/12/2024

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.

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 18/12/2024

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...

omf.ngo

Announcement!!! A New Large-Scale ME/CFS Biomarker Study (BioQuest)! - Open Medicine Foundation

Learn about BioQuest, OMF's new ME/CFS biomarker study to identify a biomarker for ME/CFS that can be evaluated through a blood test.

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Kelly @broadwaybabyto.bsky.social · 12/12/2024

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

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 12/12/2024

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!

omf.ngo

Announcement!!! A New Large-Scale ME/CFS Biomarker Study (BioQuest)! - Open Medicine Foundation

Learn about BioQuest, OMF's new ME/CFS biomarker study to identify a biomarker for ME/CFS that can be evaluated through a blood test.

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Todd Davenport @sunsopeningband.bsky.social · 12/12/2024

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.

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · 10/12/2024

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

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Stephanie Grach M.D. M.S. @grachstephanie.bsky.social · 06/12/2024

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 💙

Dr. Grach, brown haired, Caucasian female smiling and holding an award.

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Todd Davenport @sunsopeningband.bsky.social · 03/12/2024

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. 😄

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