Myalgic Encephalopathy

Jon

Myalgic Encephalopathy (ME) Awareness Week

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bedMay 11 to 17 is Myalgic Encephalopathy/Encephalomyelitis (ME) Awareness Week. ME, also known as chronic fatigue syndrome (CFS), or ME/CFS, post viral fatigue syndrome (PVFS) or CFIDS – Chronic Fatigue immune Dysfunction Syndrome. These terms all refer to the same condition, but if just naming a condition is that complicated, clearly the illness itself must be complicated too. And indeed, it is.
 
ME/CFS is often onset by a virus—after the virus should be completely gone, unrelenting fatigue, pain, sleep issues, memory issues, and often, gastrointestinal issues, remain. It can also be linked to surgery or an accident—many ME/CFS patients can pinpoint the exact day their symptoms started, as my friend Ryan states in his documentary Forgotten Plague, while others may have a slower, more gradual onset [1. 2]. ME/CFS can be “mild” to severe—some people recover or go through relapsing/remitting periods of exhaustion and near normal energy, while others remain bed-bound for most or all of the day for years. 
 
Treatment is individualized for each patient, and there is no standard treatment. Treatments that may work well for one person with ME/CFS may be ineffective or even harmful to others. [1] Adequate rest is the core treatment. [1] Graded exercise therapy may gradually help people with ME/CFS be able to carry out increasing amounts of physical activity, cognitive behaviour therapy may assist in adjusting to the changes related to a ME/CFS diagnosis. [3] Activity adjustment, some medicines including antidepressants if needed, decreasing caffeine and alcohol intake, even vitamin therapy may also help. [3, 2]
 
While ME/CFS is not all that common, 250,000 people in the UK (less than a third of a percent) have the syndrome. [3.1] If you know someone with ME/CFS, ask them how you can help support them, and how you can help advocate for more research to be done for ME/CFS. If you have ME/CFS, wearing a medical ID bracelet or necklace for chronic fatigue may help in an emergency. 
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