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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Have you seen this exciting research?

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Exciting ME/CFS & Long COVID Research: 

Insights from Suzan Jackson, a Writer & Person with ME/CFS

Suzan Jackson is a freelance writer whose work has appeared in many magazines, websites, anthologies, and her blog about living with chronic illness. She has been living with ME/CFS & Lyme disease since 2002.

There is SO much exciting research happening that will benefit both those of us who’ve had ME/CFS for years and newer people just struck down with Long COVID. One source for these new studies is Open Medicine Foundation (OMF), which has been studying ME/CFS for years.

Last year, OMF hired me to do some freelance writing. I read scientific summaries of five of their new research projects and wrote brief, easy-to-understand recaps for patients, their families, and OMF donors. I am happy to now share these summaries with you, each written for laypeople and each presenting some very exciting opportunities for new discoveries about our disease.

 

Neutrophil Study – this study by Ron Davis and his Stanford colleagues aims to identify neutrophil abnormalities in ME/CFS patients (and yes, don’t worry – my summary at the link explains what neutrophils are!). This study could potentially lead to a new biomarker for ME/CFS.

 

Post-Exertional Malaise (PEM) – conducted by Dr. David Systrom, the top PEM expert, to better understand the causes and effects of PEM (aka exertion intolerance), a feature unique to ME/CFS that is often the most debilitating part of the disease. 

 

Does ME/CFS Have a Biomolecular Signature? – the aim is to identify a unique combination of biochemical characteristics present only in ME/CFS, perhaps leading to diagnostic tests or treatments.

 

Does ME/CFS Change Molecularly Throughout a Day? – I’m very excited about this study because we patients know that our ME/CFS is constantly changing, day to day and hour to hour, but no one has studied these changes in such detail before!

 

Raman Spectrometry-Based Biomarker Discovery for ME/CFS  – this study aims to characterize the biochemical signature of ME/CFS, using a specialized kind of testing.

 

Aren’t these exciting studies? I can’t wait to hear the results! Scientists are really starting to dig into the nitty-gritty details of our disease. In case you missed it, I also helped OMF find families to interview for this excellent article, The Crisis of Sick Children with ME/CFS and Long-COVID, featuring families from our Parents’ group on Facebook.

 

I think all this new research bodes well for a great year ahead! 

 

 

If you are also excited about the research being done to benefit the ME/CFS and Long COVID community, please consider donating to OMFCA today. Your donation supports the ongoing research and helps find effective treatments and a cure. Thank you for your support!

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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.