Announcing OMF's First ME/CFS Clinical Trial!

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation® Canada

Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long COVID.

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Looking Back and Looking Forward: OMFCA’s 2023 Year in Review!

2023 Year in Review: hands of diverse skin tones connecting pieces of a wooden jigsaw puzzle.

As 2024 begins, we at Open Medicine Foundation Canada are thrilled to review a few highlights and the milestones you made possible in 2023. It was a year filled with incredible achievements, groundbreaking research, and community empowerment. 

Thanks to your unwavering support, we’ve reached new heights in our quest to understand and treat ME/CFS, Long COVID and related diseases. We’d like to start off with some exciting news! We’ve raised over $50 million since 2012! We are incredibly
grateful for your support. Your generosity has played a critical role in numerous advancements this year. Highlights include:

 

Fundraising Milestones:

  • We raised more than $8.2M in 2023.Thank you to the OMFCA community for making this year another successful year for
    accelerating research and medical education.  
  • Linda Tannenbaum, CEO of Open Medicine Foundation, dedicated her efforts to curing ME/CFS and Long COVID by participating in the 2023 Surfers Point Marathon in California, successfully raising over $50,000. This fundraising supported OMF’s Research Director’s meeting in Los Angeles and lunches for the purpose of encouraging networking at the National Institutes of Health “Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID”
    conference in Bethesda in Dec 2023.
  • Open Medicine Foundation Australia Limited (OMFAL) received a $500,000 gift to fund the initial phase of Dr. Chris Armstrong’s ground-breaking personalized treatment program. 
  • The Patient-Led Research Fund (PLRF), a project of the Patient-Led Research Collaborative and funded by Balvi Filantropic Fund, provided three grants to OMF totaling $2.251M to study Long COVID through our collaborative research centers. Additionally, OMF facilitated the funding and grant administration of other PLRF/Balvi-funded grants, in the amount of $2.254M. 

 

Research Updates:

  • First Major Clinical Trial Launch: The Life Improvement Trial (LIFT) is a randomized, double-blind placebo trial investigating two particular drugs: Pyridostigmine (commonly known as Mestinon) and low-dose naltrexone (LDN) separately and in combination. This will be our first of many funded trials over the next few years. Learn more about the LIFT! 

The image displays the headshots of Jonas Bergquist and David Systrom alongside the text “The LIFT.”

  • Increased Research Participation: We launched OMF’s StudyME, a global participant registry to connect individuals who want to participate in research with the researchers who are looking for participants. Over 7,300 participants have signed up already from around the world! We have already helped researchers at Stanford, Harvard, and Universities in Australia recruit participants! Learn more and sign up!
  • New study launched to investigate sleep disturbances in ME/CFS: Learn more!  
  • Our Scientific Advisory Board (SAB) Grows: Renowned ME/CFS expert clinician, Lucinda Bateman, MD, joined OMF’s Scientific Advisory Board. Learn more about Dr. Bateman here. 

 

New from OMF funded research: 

  • Ron Davis, PhD, & colleagues: “Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” Read it here. 
  • Jonas Bergquist, MD, PhD, & colleagues: “Temporal pathway analysis of cerebrospinal fluid proteome in herpes simplex encephalitis.” Read it here. 
  • David Systrom, MD, & colleagues: “Exercise Pathophysiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post-Acute Sequelae of SARS-CoV-2: More in Common Than Not?” Read it here.
  • Alain Moreau, PhD, & colleagues: “Circulating microRNA expression signatures accurately discriminate myalgic encephalomyelitis from fibromyalgia and comorbid conditions.” Read it here. 

    *Check out an overview of the publications that have resulted from research funded by Open Medicine Foundation since 2012: https://www.omfcanada.ngo/publication-insights/.

 

Medical Education Resource Center (MERC) Updates:

  • MERC successfully launched a second Long COVID & Post-Viral Syndromes ECHO series in collaboration with the University of Utah Health, reaching providers in multiple states and countries.
  • MERC educated medical students, residents, fellows, and practicing clinicians through the MEAction-sponsored Grand Rounds at Dartmouth-Hitchcock Medical Center.
  • Collaborations with Medscape, VuMedi, and other outlets have allowed us to embed lectures and provide enduring CME, reaching clinicians at the source of where they seek education.
  • MERC is supporting and guiding NIH initiatives such as RECOVER and the Research Roadmap.
  • A new video series was released to educate healthcare professionals on Post Exertional Malaise. Watch now! 

 

As we look ahead, we are filled with hope and determination. With your continued support, we are poised to launch more clinical trials and deepen our research and medical education endeavors. Together, we are forging a path to a better future for those affected by ME/CFS, Long COVID, and related diseases.

 

Stay tuned for more updates, and thank you for being an essential part of our journey.

 

With hope for a year full of progress,
Team OMFCA

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Microvesicles and viral sequencing
Microvesicles are a type of extracellular vesicle that is released from the cell membrane. Vesicles are small, fluid-filled sacs or vacuoles within the body. Sequencing is a technique used to determine the exact sequence of bases (A, C, G, and T) in a DNA (or viral) molecule.
NMR Metabolomics
NMR (Nuclear Magnetic Resonance) is an instrument/tool used to perform metabolic studies, metabolic profiling, and metabolomics in biofluids and tissues for more than 40 years using magnetic fields. There is a very close connection between metabolic measurements and NMR. This connection has flourished because of NMR’s many unique strengths for characterizing complex mixtures’ chemical composition.
Proteomics
The large-scale study of proteins, which are large, complex molecules that are required for structure, function, and regulation of the human body's tissues and organs.
Immune cell profiling
The immune system has many important regulatory roles in disease development and progression. Given the emergence of effective immune therapies, reliable predictors of response are needed. Immune cell profiling determines response by evaluating immune cell populations from treated and untreated samples. For our purposes, we will evaluate the white blood cell response to the viral infection using a process called “Cytof.”
Leukocyte Genomics
A leukocyte is a colorless cell circulating in the blood and body fluids and is involved in counteracting foreign substances and disease. A genome is all genetic material of an organism. Genomics is a biology field focusing on the structure, function, evolution, mapping, and editing of genomes. Therefore, leukocyte genomics is the study of all genetic material of leukocytes.
Metabolomics
Metabolomics is a way to study metabolism – that is, through measuring amounts of the metabolites (small molecules) produced by our bodies as we convert food into energy and other molecules that our cells need to survive. Metabolomics technology is ‘large-scale,’ meaning that several thousand metabolites can be measured from a single sample of e.g., blood or urine.
Micro RNA
Cells use Micro RNA to control whether a particular gene is making too much, too little or the normal amount of its protein at a particular time.
Autoantibodies
Antibodies that react with self-molecules and that occur in healthy individuals and are referred to as natural antibodies or autoantibodies.
Extracellular DNA for viral reactivation and Mitochondrial DNA
exDNA (extracellular DNA), exDNA is often secreted actively and is used to perform several tasks, thereby offering an attractive target or tool for biotechnological, medical, environmental, and general microbiological applications. Viruses are intracellular parasites that rely to a significant extent on the host cell for replication. Viral reactivation occurs when an active replication of the viral genome results in a lytic (degradation of the cell) infection characterized by the release of new progeny (descendant) virus particles.