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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
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What is
ME/CFS?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a life-altering multi-system chronic, complex disease (msCCD).

Over 20 million people

have ME/CFS worldwide

560,000

are affected in Canada alone

Estimated 70% cannot work

25% are homebound

No diagnostic test

No FDA approved treatment
No cure

ME / CFS affects

men, women and children.
Anyone. Any time.

A life altering disease

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex multi-system disease with many symptoms that may change over time and differ from patient to patient. The most common symptoms of ME/CFS are post-exertional malaise (worsening of symptoms upon even minimal exertion), unrefreshing sleep, profound fatigue, cognitive impairment, orthostatic intolerance, and pain.

The cause of ME/CFS is currently unknown, but a combination of genetic and environmental factors appear to be relevant. There are no specific diagnostic tests or CIHR approved treatments available.

ME/CFS is a multi-system disease

Symptoms

Not only do symptoms vary in type but also in severity, ranging from mild to severe. An estimated one in four patients are housebound or bed bound and many of the most severely affected need to be fed by tube.

There are over 60 symptoms reported by people with ME/CFS. The common symptoms are listed but not limited to what may define an individual experience.

Currently, there is no laboratory diagnostic test. Due to a symptom set that overlaps with several other diseases, clinical assessment and symptoms and the exclusion of other diseases are necessary for accurate diagnosis.

Illustration, symptoms of ME/CFS

Most Common Symptoms

Main Diagnostic Symptoms

Post-exertional malaise (PEM) - symptoms worsen after exertion

Reduction or impairment in ability to carry out normal daily activities, accompanied by Profound Fatigue

Unrefreshing sleep

Cognitive Impairment

Orthostatic intolerance (symptoms worsen when sitting or standing upright)

Severe body pain and worsening headaches

Neurological or Cognitive Symptoms

Brain Fog

Confusion & Disorientation

Difficulty concentrating

Short-term memory issues

Ataxia and muscle weakness

Hypersensitivity to noise and light

Autonomic, Immune & Digestive Symptoms

Postural Orthostatic Tachycardia Syndrome (POTS)

Dysautonomia

Irregular heartbeat

Increased heart rate on standing

Recurrent flu-like symptoms

Sweating, fever, chills and night sweats

Nausea & Irritable Bowel Syndrome

New sensitivities to food, medication, chemicals

Recurring sore throat

Joint pain without swelling or redness

Tender lymph nodes

Light-headedness

Shortness of breath

Change in body weight

Temperature instability

Change in appetite

People with ME/CFS often go years before diagnosis, and 90% of sufferers have never been properly diagnosed.

Diagnosis

You play a vital role in helping healthcare providers understand your symptoms (or your family member’s symptoms) and how they affect your daily life. Open Medicine Foundation hopes to empower you to take care of your health today, while we search for answers for tomorrow.

helpful resources

What's it going to take to eradicate this disease?

Research

Today, the landscape of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) research is growing with the outlook for people with ME/CFS brighter than ever.

The End ME/CFS Project encompasses OMF funded and facilitated research conducted at six ME/CFS Collaborative Research Centers (CRCs) across the globe. OMFCA’s guiding strategy focuses on open, collaborative research so that precise diagnostic tools and life-changing treatments can be available to people with ME/CFS and related chronic complex diseases as soon as possible.

Support Open Medicine Foundation’s quest to find effective treatments and diagnostic tests for the millions of people affected by ME/CFS!

Read about The END ME / CFS Project
The End ME/CFS Project logo

Support OMFCA

Support Open Medicine Foundation’s quest to find effective treatments and diagnostic tests for the millions of people affected by these devastating diseases!

Donate now

Disclaimer: This website is for informational purposes only. The information provided on this website is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

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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.
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.
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.