“I would describe it like being a broken battery, where every time you try to charge me, you know, I maybe fill to 5 percent […] I think the thing that is really hard to understand about this illness is just how much it takes away from you and how so many of the basic things that make one feel like a human being just become impossible.” Jennifer Brea, ME/CFS patient.
Myalgic Encephalomyelitis (ME) – also known as Chronic Fatigue Syndrome (CFS) in the US – is a severely disabling neuro-immune disease that affects multiple body systems including the brain, immune system, endocrine system, autonomic nervous system, muscles and the gut. The key symptom is “post-exertional malaise”: a flare-up of neuro-immune symptoms including severe exhaustion, flu-like malaise, pain, and cognitive difficulties, following effort that can be as trivial as sitting in a chair or brushing one’s teeth.
Like MS, ME/CFS can relapse and remit, remain stable, or progress. There is a range of disability. An estimated 25% of patients are housebound or bedbound: many have been so for decades. As few as 4% of severely affected patients ever recover. Many cases of ME/CFS begin with an acute viral illness. There have been outbreaks of ME/CFS in many countries, including the US. The disease can, like polio, occur in outbreaks, in clusters or as individual cases.
Some patients are able to live a partially normal life but may, for example, only be able to work by taking extensive bedrest afterwards. Many quite severely affected patients might be able to spend a brief period out of the house and can appear perfectly healthy for that short time before their symptoms build and they are forced to rest. The most severely affected patients are confined to bed, unable to care for themselves.
It is estimated that up to 2.5 million Americans, over 400,000 Canadians and over 250,000 Britons have ME/CFS. Worldwide prevalence is at least 17 million. As with autoimmune conditions such as MS and lupus, most patients are women. It strikes all racial, ethnic, and socio-economic groups. ME/CFS can occur at any age. Many children have the disease and lose many years of school. Some do not recover and never have the chance to go to college, have a career, marry or have a family.
ME/CFS costs the US economy over $17 billion each year. Its prevalence, economic effect, disabling impact and chronicity create a heavy burden for both patients and society. The illness has been neglected by the US government for decades.
MS has a similar disability profile to ME/CFS and affects approximately 4 people for every 10 with ME/CFS. MS typically receives about $115 million in research funding from the National Institutes of Health (NIH) each year while ME/CFS receives $5 million , this helps demonstrate the disparity in health equality with respect to funding. Male pattern baldness has also been reported to receive more funds in research than ME/CFS.
The CDC renamed the disease “Chronic Fatigue Syndrome” (“CFS”) in 1988. They diluted the diagnostic criteria in 1994 so that the key symptom of post-exertional malaise was no longer necessary for diagnosis. A later, further weakening of the criteria resulted in ten times as many people being diagnosed with the condition.
Patients, specialist clinicians and researchers are campaigning for the trivialising name of “Chronic Fatigue Syndrome” – akin to calling MS “Chronic Pins and Needles Syndrome” – to be discontinued. Many want the more specific Canadian consensus criteria to be adopted so that research is no longer hampered by mixing ME patients in with people with chronic fatigue of unknown cause. Meanwhile, the disease is often referred to as “ME/CFS”.