ME/CFS: Myalgic Encepha—what? Exploring Chronic Fatigue Syndrome

Posted on October 30, 2016 by kerri
Silhouette of exhausted person icon, with hands on knees.
This past week, I was fortunate to reconnect with my friend and filmmaker Ryan Prior. Ryan lives with Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis or the combined acronym ME/CFS, and in 2014, I had the opportunity to view an unfinished cut of his film Forgotten Plague: M.E. and the Future of Medicine. Fast forward two years, and I found myself with a DVD in my hands of the finished film that I could not wait to re-watch.
Ryan’s film, in tandem with a few Google searches, has lead me to have a greater understanding of the complex world of ME/CFS. Seldom talked about, ME/CFS likely affects nearly as many people as Parkinson’s Disease [1]—the CDC reports that one million Americans may live with ME/CFS and that as many as 80% are undiagnosed. [2] One reason for this may be the unfortunate name of Chronic Fatigue Syndrome, as stated in Forgotten Plague, which leads to people simply not taking this diagnosis seriously enough.
What should you know about ME/CFS?
  • It is real, and very different from simply being tired.
  • ME/CFS often strikes suddenly—most people know the exact date of when their symptoms started. [3]
  • ME/CFS is an immune dysfunction syndrome, but not a lot is known about it. [4] It is also known as Chronic Fatigue Immune Deficiency Syndrome [4],
  • ME/CFS commonly presents as post-exertional malaise (or tiredness), and exercise test results that are much worse on the second day of testing [4, 3]. Sleep is often “unrefreshing” [4]. Pain and concentration problems are also common with ME/CFS.
Other symptoms associated with ME/CFS include vision problems/disturbances (blurred vision, light sensitivity or pain), irritability and mood swings, fainting, dizziness and balance problems, allergies and food sensitivities, cognitive impairment (“brain fog” or sluggishness) and symptoms that may seen like the flu—gastrointestinal problems, night sweats/chills. [4]
Some people with ME/CFS, like my friend Ryan, can live basically normal lives with the right treatment, lifestyle changes, and medication. Some people, however, do not benefit as greatly from treatment. ME/CFS essentially has a spectrum of severities: some people may appear to live what we would perceive as a “normal” life, others require weeks of rest for simply one “normal” day, whereas others with the same diagnosis simply cannot get out of bed, and sitting up is equivalent to intense exertion, and may require assistance with all activities of daily living. [3]
Treatments are primarily in the clinical trial phase, and there is no mainstream treatment for ME/CFS. Treatment is mostly targeted at alleviating symptoms of sleep disturbance, pain, and managing energy [5]. The ME Association of the United Kingdom lists the following as the key ways ME/CFS is treated:
  • Activity management (pacing and graded exercise therapy)
  • Cognitive behaviour therapy
  • Vitamin supplements (oral or infusion)
  • Pain medicine, antidepressants, hydrocortisone or other hormone treatments, antiviral drugs, antibiotics and analgesics
To learn more about ME/CFS, I recommend watching Ryan’s documentary: Forgotten Plague is available on DVD, Amazon Prime Instant, Google Play and iTunes. You can also learn more online through the Solve ME/CFS Initiative online.
If you have ME/CFS and are involved in a clinical trial, it is important to wear a medical ID bracelet or necklace to communicate this in case of an emergency.
Disclosure: Ryan did not ask me to post about Forgotten Plague, and I paid for the DVD like everybody else :]. I found the information I learned from him interesting and wanted to learn more and share with our MID Community.

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