Open Medicine Foundation (OMF)

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.

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

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.”

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....

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...

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

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.

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.

🧬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)

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!”

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.

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."

🔬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.

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?”

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....

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

#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

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.

🛍️ 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

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

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/

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

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.

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

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.

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. .

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...

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

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

➡️ 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.

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.

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)

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."

🍂 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.

"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

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.

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

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.

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

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.

🧬 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....

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

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.

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

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.

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

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...

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/

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

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

Welcome! You are invited to join a meeting: Pillow Writers Salon 2025. After registering, you will receive a confirmation email about joining the meeting. Join #MEAction for our exciting Pillow Writers’ Salon on Thursday, September 18th at 11am PT/2pm ET/7pm UK. This live Salon will feature readings by the authors of both comic and serious, stories, e...

You are invited to join #MEAction for our latest Pillow Writers’ Salon on Thursday, September 18th at 11am PT/2pm ET/7pm UK.

Register: us06web.zoom.us/meeting/regi...

More about Pillow Writers: pillowwriters.wordpress.com

#pwME #MECFS #spoonie #WritingCommunity #LongCovid #MyalgicE

Brief description: double-blind, placebo-controlled investigation of pyridostigmine (Mestinon) and low dose naltrexone (LDN)

Time required: 3 months, 3 onsite visits, 4 virtual visits

Study tasks: sub-maximal exercise test(s), biweekly questionnaires and brain games, blood draws

On the right, eligibility criteria are listed: ages 18–65, meet Canadian Consensus Criteria for ME/CFS with orthostatic intolerance, symptom onset before December 2023, ability to meet study requirements, and possession of a functioning smartphone. Below, text invites participation through OMF’s StudyME Registry at www.omf.ngo/studyme

The Mestinon/LDN Life Improvement Trial (LIFT) is seeking eligible research participants now within 300 miles of Brigham and Women’s Hospital at Harvard Medical School.

Learn more about the LIFT: clinicaltrials.gov/study/NCT063...