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Reposted by Andrea Fighting for #MECFS Diagnostic Biomarkers

DecodeME @decodemestudy.bsky.social · Aug 4

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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Reposted by Andrea Fighting for #MECFS Diagnostic Biomarkers

Michiel @murtoz.bsky.social · Jul 31

www.change.org/p/save-savan...

www.change.org/p/the-nhs-mu...

www.change.org/p/save-karen...

Sign the Petition

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

www.change.org

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Reposted by Andrea Fighting for #MECFS Diagnostic Biomarkers

sarah boothby @swastrosarah.bsky.social · Jul 31

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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Reposted by Andrea Fighting for #MECFS Diagnostic Biomarkers

Michiel @murtoz.bsky.social · Jul 31

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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Reposted by Andrea Fighting for #MECFS Diagnostic Biomarkers

sarah boothby @swastrosarah.bsky.social · Jul 31

@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.

Michiel @murtoz.bsky.social · Jul 31

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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Reposted by Andrea Fighting for #MECFS Diagnostic Biomarkers

sarah boothby @swastrosarah.bsky.social · Jul 31

@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.

sarah boothby @swastrosarah.bsky.social · Jul 31

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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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · Jul 14

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 · Jun 26

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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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · Jun 21

PEM is required for a ME/CFS diagnosis. That means only 55% of the UK Biobank ME/CFS samples are ME/CFS samples. Meaning that 45% of UK ME/CFS samples are *NOT* ME/CFS samples because they don't have PEM.
Shouldn't Non-PEM samples have been excluded as not meeting the definition of ME/CFS?

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · Jun 21

I am puzzled.
"Among the ME/CFS cases with available Pain Questionnaire data, 55% reported long-lasting PEM-like symptoms (“Methods”). This allowed us to compare blood trait results for those with PEM versus those without PEM symptoms."

By definition, Patients without PEM are not ME/CFS patients.

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Reposted by Andrea Fighting for #MECFS Diagnostic Biomarkers

Daniel Missailidis, PhD @danielmissailidis.bsky.social · May 16

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...

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.

link.springer.com

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · May 18

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 · Feb 28

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 · Feb 4

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 · Jan 30

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 · Jan 29

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

2025: ME/CFS Diagnostic Biomarkers in Review

A ME/CFS diagnostic blood test Pocket Guide

mecfsdiagnosticbiomarkers.substack.com

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Reposted by Andrea Fighting for #MECFS Diagnostic Biomarkers

Open Medicine Foundation (OMF) @openmedf.bsky.social · Jan 28

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 · Jan 28

Thank you! 💜

Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · Jan 27

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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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · Jan 9

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...

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.

www.omf.ngo

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · Jan 2

📌

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Reposted by Andrea Fighting for #MECFS Diagnostic Biomarkers

It's ME(Jaime) @exceedhergrasp1.bsky.social · Jan 2

Worth a read

Gregg Gonsalves @gregggonsalves.bsky.social · Jan 2

So, you may ask, why do I get so angry about the new liberal spin on RFK Jr, as in, "he gets some things right, so let's collaborate on those" or "we have to work with him because he has a huge following we need to reach"? Because I've seen this movie before. 1/

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · Dec 31

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

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.

www.omf.ngo

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Andrea Fighting for #MECFS Diagnostic Biomarkers @mecfsnanoneedle.bsky.social · Dec 24

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 · Dec 23

Once we can point to proteins, or genes or MicroRNAs it will get easier. In my opinion, anyway. The truth of ME/CFS will never be easy to explain- but if we can use some proteins for the highlights in time, the world will get it.

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