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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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Newsletter February 2021

An Update from Chris Armstrong,
Director, Melbourne ME/CFS Collaboration

The Melbourne ME/CFS Collaboration is the fifth and newest OMF funded collaborative research center. After making the journey to Australia to set up the Collaborative Research Center (CRC), Director Chris Armstrong began the groundbreaking study that he hopes will improve the lives of ME/CFS patients of Australia — and beyond:

Moving countries is stressful at the best of times, and these are not the best of times. It took three months traveling on an emotional rollercoaster of flight cancellations and availability to get from California to Australia. This would have been demoralizing in any other situation, but this year I could not help but feel lucky and thankful as we all were experiencing the same hardships and many others have it a lot worse. With quarantine and moving behind me, I am pleased to share that my new team and I at the Open Medicine Foundation Collaborative Research Center in Australia are launching a Longitudinal Study of people with ME/CFS. While we know people with ME/CFS often suffer the same or similar symptoms, we do not know if the same or similar underlying biological problems trigger the symptoms. By looking at the biological differences in individuals with ME/CFS at mild and severe moments of their disease, we can start to piece together what may be causing their illness and what circumstances improve or exacerbate their symptoms. Longitudinal Study Overview Participants with ME/CFS will be asked to:
  • wear heart rate monitors
  • fill in surveys
  • provide finger-prick blood drops
  • collect urine samples from themselves while at home.
We will look for patterns between wearable data, reported symptoms, and biological changes in blood and urine at different levels of disease severity to determine the cause or exacerbating aspects of each individual’s disease. By monitoring people with ME/CFS in this way, we can identify and accumulate the many biochemical changes that may reflect recovery or symptom improvements, and ultimately, diagnostic biomarkers could result. We are aiming for preliminary data by the end of this year. The Longitudinal Study will be one of several projects we are beginning in the next few months at the Melbourne ME/CFS Collaboration established by Open Medicine Foundation in collaboration with Emerge Australia. Both these nonprofit organizations have been incredibly supportive of the ME/CFS community and my research.  I feel fortunate and thankful and look forward to providing further updates to the ME/CFS community.

Commemorating National Caregiver Day

A caregiver shares her touching story

This past February 19 marked National Caregivers Day. Open Medicine Foundation Canada would like to take a moment to acknowledge and thank all of the selfless caregivers who help to support their loved ones with ME/CFS and related complex, chronic illnesses.

To acknowledge the resilience and strength of caregivers in our community, we are honored to share the story of a mother and caregiver to a son who is severely ill with ME/CFS:

“My name is Rebecca Groble and I am the mother of Gabriel Hull, who is severely ill with ME/CFS.

In the summer of 2018, he was on a fellowship in China and became very sick. Initially, the doctors thought he might have leukemia or another blood disease, but soon realized he had a severe case of mononucleosis. It was a scary time for us. We were back home, and he was across the globe. I was getting ready to go to China when he started stabilizing, and he told me not to come. He improved and was able to continue the fellowship. However, instead of traveling around China after the fellowship ended as he had planned, he came straight home to Illinois.

"Despite the pain and heartbreak, I still have found beauty in my relationship with Gabriel."

Check out our FAQ page!

OMFCA has created a new frequently asked questions (FAQ) page, available on our website!

Check it out now

Don’t see an answer to your question? Feel free to contact us: info@omf.ngo. We hope you find this to be a valuable resource! 

Got an unwanted car?

You can help OMF this winter by donating any unwanted vehicles taking up space at your home. Cars, trucks, SUVs, boats, and even farm equipment can help us accelerate our work to end ME/CFS. Donating is easy, and the pick-up is free. To get started, visit careasy.org. 

*Please note, this option is currently only available in the United States.

Share your story with us!

Your story is important. By sharing your experiences, we can increase awareness and understanding of what it is like to live with chronic, complex illnesses.

At OMF, we also understand the importance of community. Sharing your story starts meaningful conversations and connects you to others within our network of patients, advocates, and allies.

Submit your story today to info@omfca.ngo*


*By submitting, you consent to letting Open Medicine Foundation use your story for our public social media platforms or website.

If you are able, please consider contributing to our effort to
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Help us improve the quality of life for all sufferers of ME/CFS and other
chronic complex diseases, such as Post Treatment Lyme Disease Syndrome
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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.