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Open Medicine Foundation (OMF) @openmedf.bsky.social · 1h

OMF’s Collaborative Center at Montreal, in collaboration with our Melbourne ME/CFS Collaboration, has released a new paper: Circulating Levels of SMPDL3B Define Metabolic Endophenotypes and Subclinical Kidney Alterations in Myalgic Encephalomyelitis.

🔗 ow.ly/uY8x50WW32a

#mecfs #pwME

Photo of Dr. Alain Moreau and text that reads: Circulating Levels of SMPDL3B Define Metabolic Endophenotypes and Subclinical Kidney Alterations in ME, What is this research about? This study looked at a protein called SMPDL3B, which normally helps protect kidney cells. The team found that people with ME/CFS have unusual levels of this protein in their blood and urine. The study also found differences between men and women, with women showing more pronounced changes.

Picture of a light bulb and text that reads: Why does it matter for people with ME/CFS?ME/CFS is a complex illness with no clear diagnostic test and cure. These findings suggest that SMPDL3B could become a new biomarker—a measurable sign of the disease. This is important because:It could help detect early organ stress that standard tests miss, It may explain some symptoms like fatigue and pain, which could be linked to kidney and metabolic dysfunction, It highlights biological differences between men and women, which could lead to more personalized care.

Picture of Dr. Moreau and his team in a lab and text that reads: What is the potential impact? If confirmed in larger studies, this discovery could:Lead to a simple blood or urine test to help diagnose ME/CFS or monitor its progression,Open the door to targeted treatments that protect kidney function and restore metabolic balance, Improve precision medicine approaches, tailoring care based on biological markers and sex differences.

Open Medicine Foundation (OMF) @openmedf.bsky.social · 1d

October 9 is DAF Day—a national day dedicated to the power of Donor-Advised Funds (DAFs) to make a difference.

This year, you can multiply your impact by directing a grant from your DAF to OMF. To learn more about DAFs, visit our ways to donate page: www.omf.ngo/ways-to-dona....

Graphic reading “October 9 is DAF Day!” with icons showing a piggy bank, a rising chart, and a hand holding a heart labeled “Donors Contribute,” “Assets Grow,” and “Charities Benefit.”

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 2d

👉 Learn more about their projects: ow.ly/4BnF50X8tcs.

Melbourne ME/CFS Collaboration

Melbourne ME/CFS Collaboration Precision research program to identify the unique biology of individuals and the unifying biological pathways of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME...

ow.ly

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 2d

Metabolomics is also an important way to study metabolism, trying to understand alterations in metabolism through changes in metabolite levels.

OMF’s Melbourne ME/CFS Collaboration has particular expertise in #metabolomics, incorporating it in many of their ME/CFS research studies.

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 2d

🧬Science Wednesdays: Metabolism

There are a couple important ways metabolism is studied in ME/CFS. For one, the #mitochondria play a central role in metabolism and there’s a growing body of evidence showing mitochondrial dysfunction in #MECFS. (1/3)

Person wearing a white shirt is writing the word ‘metabolism’ in black on a transparent surface. Their hand and cheek are visible behind the surface.

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 4d

Give your car new purpose this Cartober!

When you donate your car, truck, motorcycle, RV, or boat to OMF, the proceeds from your sale will support #MECFS and #LongCOVID research.

To learn more, visit: ow.ly/4zvh50X74vv.

A person in a pink shirt holds a small yellow toy car in both hands. The background is softly blurred in shades of pink and purple. Text on the left side reads: “Every car can drive change. Support our mission with your car donation!”

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 8d

🔬Help advance #MECFS and #LongCOVID research by joining OMF’s StudyME, a free participant registry that connects you with researchers conducting studies in these areas. Healthy volunteers needed too!

👉 www.omf.ngo/studyme/

Already part of StudyME? Please share this post to reach more people.

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 9d

In clinical trials, there are different treatment groups that a participant gets put into when they start the trial. Blinding is when different people involved in the trial are kept unaware, or blind, to which group the participant is in.

Learn more: www.omf.ngo/what-is-blin....

An image with a close-up of white capsules spilling out of a white pill bottle onto a dark surface. In the center, a light blue square with blue tape at the top displays the text: “Science Wednesdays: What is Blinding?”

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Reposted by Open Medicine Foundation (OMF)

#MEAction Network @meactnet.bsky.social · 10d

#MEAction is asking you to take action to save telehealth NOW!

You can call or email your member of Congress. To make this action easier, we have drafted up a sample script you can use: www.meactions.org/telehealth

#Telehealth #PwME #LongCovid #MECFS #Congress #Disability

Image of a megaphone at bottom corner and Capitol building in top right corner. Text: Contact congress today to keep telehealth!

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 11d

🛍️ Shop with iGive! With iGive you can shop online at 1,700+ stores, and a percentage of your purchase will go directly to OMF, all at no cost to you or OMF.

Shop & Support OMF 👉 ow.ly/23iX50X3AV7.

#ShopWithPurpose #pwME #pwLC

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 16d

Autoimmunity is the presence of antibodies and T lymphocytes that react to normal parts of a person’s system. OMF’s ME/CFS CRC at Uppsala has found an upregulation of autoantibodies in up to 70% of people with #MECFS in a preliminary study.

Read more: www.omf.ngo/autoimmunity/

Stylized 3D Y shaped antibodies (immunoglobulins) floating on a soft pink purple background; one central antibody in sharp focus. The text reads: Science Wednesdays: Autoimmunity

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 16d

The happiest possible birthday, Niko! Thank you so much for your support.

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Reposted by Open Medicine Foundation (OMF)

Niko Suvisto @nikosuvisto.bsky.social · 19d

Today is my birthday, and I’m turning 34. Do I feel my age? No. The perception of age vanished at some point while I became chronically ill. Still, there are fleeting moments when I’m reminded of it. 1/9

#MECFS #pwME #Photography
@openmedf.bsky.social

A black and white photo inside a white frame: Niko, a white man with dark buzz cut hair and a beard, lying in bed. His head is resting on a pillow, and he’s looking at the distance. He’s wearing a grey sweatshirt.

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 22d

Linda Tannenbaum (OMF Founder & CEO), Kimberly Hicks (CFO/COO/Treasurer), and Danielle Meadows (VP of Research Programs) are visiting Boston for in-person meetings.

Here are a few photos from yesterday’s meeting with researchers from OMF’s Harvard ME/CFS Collaboration. .

The photo shows a group gathered indoors. Kimberly Hicks is in the front, wearing a white jacket over a t-shirt. Next to her, Linda Tannenbaum is wearing a blue shirt, and Danielle Meadows is in a purple t-shirt. Everyone is smiling. The rest of the group are researchers from the OMF Harvard ME/CFS Collaboration.

The photo shows a meeting in a conference room, with participants seated around rectangular tables arranged in a U-shape. On the left side, Wenzhong Xiao and David Systrom are seated. On the right side, several women are engaged in the discussion. Among them are Kimberly Hicks, wearing a white jacket, and Danielle Meadows, in a purple top. Bottled water, notebooks, and folders are on the tables.

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 23d

This is the first strong evidence of a genetic contribution to #PEM in #MECFS.

Full publication: translational-medicine.biomedcentral.com/articles/10....

Haptoglobin phenotypes and structural variants associate with post-exertional malaise and cognitive dysfunction in myalgic encephalomyelitis - Journal of Translational Medicine

Background Myalgic encephalomyelitis (ME) is a chronic, multisystem illness characterized by post-exertional malaise (PEM) and cognitive dysfunction, yet the molecular mechanisms driving these hallmar...

translational-medicine.biomedcentral.com

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 23d

➡️ Low Hp was linked to worse PEM symptoms and poorer cognitive performance (“brain fog”).
➡️ Certain genetic forms of Hp influence how severe PEM becomes: patients with the Hp2-1 genotype had stronger #PEM and more cognitive problems, while those with Hp1-1 were more resilient.

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 23d

OMF Collaboration Investigates Molecular Basis of Post-Exertional Malaise (PEM) 👉 Read more from Dr. Moreau: www.omf.ngo/haptoglobin-....

Key findings:
➡️ After a mild stress challenge, #pwME showed a sharp drop in haptoglobin (Hp) levels, while healthy controls did not. (1/2)

New Publication from OMF Collaboration Investigates Molecular Basis of PEM - Open Medicine Foundation

New publication reveals first strong evidence of a genetic contribution to post-exertional malaise (PEM) in ME/CFS.

www.omf.ngo

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 24d

🍂 Did you know you can support OMF research by donating any unwanted vehicles? Cars, trucks, boats, and even farm equipment can help us accelerate our work to end #MECFS and #LongCOVID. Donating is easy, and the pick-up is free.

👉 Get started today: ow.ly/rzTa50UXR3I.

A silver SUV is being transported on the back of a flatbed tow truck driving down a quiet road lined with autumn trees. The sky is softly lit with a warm sunset glow. At the top, text reads: "Fall for a great cause – Donate Your Vehicle."

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Reposted by Open Medicine Foundation (OMF)

Tom Kindlon @tomkindlon.bsky.social · 26d

"Metformin is an intriguing multiaction drug that may play a significant role in treating ME/CFS & LC. Although more research is needed to refine dosing and delivery methods, the accumulating evidence suggests it could soon be integrated into clinical practice."
#MEcfs #LongCovid

Open Medicine Foundation (OMF) @openmedf.bsky.social · 27d

A new review from Melbourne ME/CFS Collaboration, in collaboration with Collaborative Center at Montreal, highlights the potential of metformin, an antidiabetic agent, as a treatment for #MECFS and #LongCOVID.

👉 Read the full publication: ow.ly/uXQJ50WVZax

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 27d

OMF’s Collaborative Center at Montreal, in collaboration with our Melbourne ME/CFS Collaboration, has released a new paper: Circulating Levels of SMPDL3B Define Metabolic Endophenotypes and Subclinical Kidney Alterations in Myalgic Encephalomyelitis.

🔗 ow.ly/uY8x50WW32a

New Publication from OMF Collaboration Investigates SMPDL3B Protein - Open Medicine Foundation

Research shows people with ME/CFS have unusual SMPDL3B protein levels in blood and urine.

ow.ly

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 27d

A new review from Melbourne ME/CFS Collaboration, in collaboration with Collaborative Center at Montreal, highlights the potential of metformin, an antidiabetic agent, as a treatment for #MECFS and #LongCOVID.

👉 Read the full publication: ow.ly/uXQJ50WVZax

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Open Medicine Foundation (OMF) @openmedf.bsky.social · Sep 10

🧬 Science Wednesdays: What is Proteomics?

Proteomics is the study of the set of proteins present in the body at a given time. Looking at protein levels is a critical part of OMF’s large-scale biomarker study, BioQuest. Learn more about proteomics and BioQuest here: www.omf.ngo/what-is-prot....

What is Proteomics? - Open Medicine Foundation

Learn about proteomics, how it’s used in ME/CFS research, how proteins are measured, and its role in OMF’s large-scale biomarker study.

www.omf.ngo

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Reposted by Open Medicine Foundation (OMF)

#MEAction Network @meactnet.bsky.social · Sep 9

List of orgs: #MEAction, Solve ME, Open Medicine Foundation, Bateman Horne Center, Renegade Research, Massachusetts ME/CFS & FM Association, Simmaron Research Inc., Complex Disorders Alliance (CODA), and CORe Community, Inc. (COVID Recovery through Community) all

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Reposted by Open Medicine Foundation (OMF)

#MEAction Network @meactnet.bsky.social · Sep 9

RECOVER TLC clinical trials should include subgroup tracking and analysis for ME/CFS (using IOM criteria), POTS & other forms of dysautonomia, and MCAS.

We joined several orgs in signing a letter sent to RECOVER TLC leadership.

Letter: ow.ly/nFUa50WU60F

#LongCovid #pwME #NIH

Photo of two researchers looking at computer screens. Logos for 8 organization in bottom left.
Text: Organizations send letter to RECOVER TLC. Organizations united to ask that Recover TLC clinical trials track ME/CFS, POTS & other forms of dysautonomia, and MCAS.

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Open Medicine Foundation (OMF) @openmedf.bsky.social · Sep 5

In April 2023, we launched OMF StudyME, a free global registry connecting people with #MECFS, #LongCOVID & related diseases to researchers.

🙌 Over 14,000 participants have joined! Sign up in <5 mins & help accelerate research 👉 www.omf.ngo/studyme

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