openmedf.bsky.social
Open Medicine Foundation (OMF)
@openmedf.bsky.social
4.2K followers 660 following 580 posts
OMF is fundraising to support open, collaborative research to find effective treatments and a cure for ME/CFS, Long COVID, and related diseases.
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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 22d
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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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 16h
👉 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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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 16h
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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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 16h
🧬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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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 2d
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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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 6d
🔬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.
The image shows a young woman in a laboratory setting. She is wearing a white lab coat over a pink shirt. In the top right corner, there is the StudyME logo, which features a globe-like design made of interconnected circles in shades of teal and navy, alongside the text "StudyME."
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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 7d
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)
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 9d
#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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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 9d
🛍️ 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
Graphic with the title “Shop with Purpose!” showing a phone with a shopping cart image and OMF logo. Steps on the right: Visit iGive (bit.ly/iGiveOMF), Sign up for a free account, Shop online — a percentage goes to OMF.
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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 14d
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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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 14d
The happiest possible birthday, Niko! Thank you so much for your support.
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Reposted by Open Medicine Foundation (OMF)
nikosuvisto.bsky.social
Niko Suvisto @nikosuvisto.bsky.social · 18d
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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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 21d
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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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 22d
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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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 22d
➡️ 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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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 22d
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
1 9 24
openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 23d
🍂 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)
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 24d
"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
openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 26d
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
Cover of a review article titled “A Perspective on the Role of Metformin in Treating ME/CFS and Long COVID,” with author names, the OMF logo, and a 3D illustration of a mitochondrion.
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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 26d
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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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 26d
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
Cover of a review article titled “A Perspective on the Role of Metformin in Treating ME/CFS and Long COVID,” with author names, the OMF logo, and a 3D illustration of a mitochondrion.
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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · 28d
🧬 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)
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 29d
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)
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 29d
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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openmedf.bsky.social
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
StudyME logo with a blue molecular network graphic and text 'StudyME.' Below, large text reads 'Thank You 14K Participants' in bold navy and teal font. The background is white with scattered gold confetti.
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Reposted by Open Medicine Foundation (OMF)
exceedhergrasp1.bsky.social
It's ME(Jaime) @exceedhergrasp1.bsky.social · Sep 5
Wenzhong Xiao discussing the treatments survey that I have literally already cited twice 😂

Hey, it's great work! 🧪

The paper is here: pubmed.ncbi.nlm.nih.gov/40627388/
Patient-reported treatment outcomes in ME/CFS and long COVID - PubMed
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID are persistent multisystem illnesses affecting many patients. With no known effective FDA-approved treatments for either cond...
pubmed.ncbi.nlm.nih.gov
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openmedf.bsky.social
Open Medicine Foundation (OMF) @openmedf.bsky.social · Sep 4
New Papers: OMF CRCs at Stanford and Montreal

🌟Microfluidic Assessment of PO2-Regulated RBC Capillary Velocity in #MECFS
🌟Circulating FGF-21 as a Disease-Modifying Factor Associated with Distinct Symptoms and Cognitive Profiles in #ME and #Fibromyalgia

ow.ly/6KO350WRwVz
Photo of Dr. Ron Davis wearing a green t-shirt and smiling and photo of Dr. Alain Moreau wearing glasses and a blue shirt. He is standing outdoors, with green leaves visible in the background. The text at the bottom reads: New Publications
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