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10 Things You Should Know About Myalgic Encephalomyelitis

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A “spoonie” necklace in support of ME. Photo credit Jessica Diamond. Necklace made by Lynne Allan.

While on holiday in 2011, at the age of 14, I suddenly lost most of my muscle strength, became inexplicably and disproportionately exhausted by small tasks. I started experiencing pain that would soon become chronic, and began to notice a wide range of difficult and often debilitating symptoms. Over the next five years I experienced becoming housebound, bed bound and then finally finding freedom again. Albeit, part of my freedom now includes a wheelchair. My life has been devastatingly and irrevocably changed by this very serious, but very misunderstood disease. This May is myalgic encephalomyelitis (ME) awareness month. I want to raise awareness about my illness and the consequences it has on the lives of those who suffer from it.

So, here are 10 things you should know about ME:

1. Myalgia means muscle pain, and encephalomyelitis means inflammation of the spinal cord and brain. These are two key features of ME. Some people dispute the name and call it myalgic encephalopathy, chronic fatigue syndrome (CFS), Gulf War syndrome, post viral fatigue syndrome and chronic fatigue immune deficiency disorder.

2. As mentioned above, it is often conflated with CFS, which tends to be a “catch-all diagnosis” for illness that can’t otherwise be attributed to anything. It is often perceived to be psychiatric or somatoform in nature. Conversely, ME is a distinct illness in itself, with a clear biological basis and its own unique etiology and symptoms. This is very controversial, and there is a big divide among the opinions of patients, leading ME specialists and those who create the national guidelines (who are often influenced by psychologists and psychiatrists).

3. Another area of controversy is treatment. ME specialists maintain that there is no known cure and currently no specific treatment. The illness is instead treated symptom by symptom, with patients often having to piece together their own care and treatment plans. Proponents of the conflation of ME with CFS state that graded exercise therapy (GET) and cognitive behavior therapy (CBT) should be the standard treatments, although they are unwilling to release the data from the PACE trial upon which these suggestions are based. Proponents of the biological, scientific basis of ME warn of the harms of GET, and the danger of implying that ME is psychological.

4. It is classed as a neurological disorder by the World Health Organization, and a neuro-immune disease by the ICC. Studies have found similarities between ME and MS, HIV and AIDS, many forms of cancer, polio, lupus, Lyme disease and renal failure.

5. It was originally thought to be a type of polio and was called polio myelitis.

6. It is so much more than being chronically fatigued — although this is a common symptom (often as the result of the other symptoms). Symptoms include excessive sweating, low circulating blood volume (hypovolemia), poor circulation, muscle, joint and nerve pain, reduced mobility, spontaneous or complete paralysis, seizures, difficult swallowing with or without aspiration of food, loss of bladder control due to weakened muscles, general loss of muscle mass and difficulty in building new muscle and cognitive deficits including ‘brain fog’ (an inability to think straight). It can also include difficulty finding words, amnesia, worsened short and long-term memory and alexia or acquired dyslexia. This is why many patients resent the term CFS so much. The level of fatigue in ME is unlike anything experienced normally, or even by sufferers of other serious illnesses, and the symptoms can be much more vast.

7. Common complications are irritable bowel syndrome (IBS), chemical and other allergies/sensitivities,  postural tachycardia syndrome (POTS), heart problems, liver problems, kidney problems, dehydration and malnutrition.

8. Exercise can make it worse. Post-exertional neurological malaise is the cardinal symptom. ME patients have elevated resting heart rates, meaning a further increase in heart rate, like exercise, can be very dangerous. Strength-training exercise is very difficult due to atrophy of muscles and the toxicity that patients experience due to excess lactic acid.

9. About 20 percent of ME patients are bed, hospital, or housebound, and many within this group are unable to eat, drink, swallow, speak, or move without assistance from others or machines.

10. There isn’t one definite cause, but many possibilities have been identified, as well as factors that predetermine someone’s chances for developing ME. Common causes are the Epstein-Barr virus, glandular fever, and the common cold or flu virus.

ME is chronically underfunded and under-researched. If you’d like to consider donating, please visit Invest in ME to help fund biomedical research into this disease. Most of the information from this post is derived from the ICC.


The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 12, 2016
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