Jennifer Brea . . . disabled by myalgic encephalomyelitis, or ME — “the most prevalent and devastating disease your doctor has never heard of,” she said. . .chronic fatigue syndrome . . . a name . . . does a disservice to the severity of her symptoms.
“Even sitting in a wheelchair is taxing for me”
fevers and dizziness and couldn’t leave the house without bumping into things or falling over.”
“Canary in a Coal Mine,” to chronicle the lives of others living with ME
anger and confusion and fear
a fundraising campaign on the crowdsourcing site Kickstarter
“myalgic encephalomyelitis” was coined in Britain in the 1960s and is now the definitive name used by the World Health Organization. . . an illness that affects more than 800,000 Americans, according to the CFIDS Association of America.
The Centers for Disease Control and Prevention describes CFS as a “profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity.” Its symptoms can include weakness, muscle pain, impaired memory and mental concentration and insomnia.
Dr. Nancy Klimas, a neuro-immunologist with an expertise in CFS and ME at Nova Southeastern University in Florida . . . an illness that is actually an inflammation of the brain, perhaps caused by a virus.
Klimas speculates that the illness is an autoimmune disorder that starts when patients either get an infection and “never get rid of it,” or the infection actually triggers an immune response — “like a hit and run.”
“What’s fascinating about the film is the most difficult thing to get across to the medical community is how serious this disease is,” she said. “Patients get up for a few hours and look pretty decent and then go back to bed for a couple of weeks.”
doctor dismissed her symptoms . . . might be epilepsy, migraines or conversion disorder — “a kind of updated term for hysteria.” She eventually consulted an immunologist in Miami . . .
Some of the patients interviewed in Brea’s film have seen 20 doctors or more before getting a diagnosis.
One, 22-year-old Jessica Taylor of Rochester, England, one of the patients followed in Brea’s film, contracted a virus at the age of 14 and has never recovered. . . She spent months at a time in the hospital being fed by a gastric tube. . . . “All that time I have been bedridden completely and so I have not walked since 2006. At the moment I am stuck in the world of one room in a hospital bed at home.” . . . “stabbing pain like having hot needles pressed” into her legs and arms . . .Her muscles don’t work . . . “brain fog” and can’t process information. . . try to speak and nothing comes out. . . people . . . sound like they are speaking a foreign language. She said it took her an entire day of rest to prepare for the phone call from ABCNews.com. . . . She recently filmed herself sitting on the edge of the bed for the first time in eight years.
It’s beyond tiredness. It’s in every cell of my body
some improvement with an immunomodulator, magnesium injections and dozens of nutritional supplements
“We are invisible and people don’t understand how severe and life-altering this is. If they knew it, we’d get the social support we need.”
Chronic fatigue syndrome (Myalgic encephalomyelitis)
Much confusion surrounds the medical use of the term fatigue. Here we use the term ‘CFS/ME’ to refer to a profoundly disabling condition in which there’s marked difficulty in carrying out effort-related tasks. Its full title is chronic fatigue syndrome or myalgic encephalomyelitis. In normal circumstances, the feeling of physical tiredness is related to a cause such as excess effort. It may be enough to force us to rest, but it then improves in a short time.
Repeated physical effort tends to improve our fitness and ability to carry out heavy or sustained work. The severity and impact of the symptoms experienced by the majority of people with CFS/ME is vastly greater than the symptoms of what one might call ‘ordinary’ fatigue.
There’s usually a delay of anything from hours to days between the effort and the exhaustion in CFS/ME and repeated activity does not lead to adaptation and improvement in strength or stamina – usually the reverse occurs.
• CFS/ME affects between 2 and 4 people per 1000 of the population. • It affects people of all ages, including children as young as five years old. • The commonest age of onset is between the early twenties to mid-forties. • CFS/ME is diagnosed about twice as often in women compared to men. • It affects all social classes.
The most widely used [definitions] are those of the Centre for Disease Control (1994) in the USA. • Fatigue of definite or new onset that is not the result of exertion, is not significantly improved by sleep or rest and which results in substantial reduction in overall performance for a consecutive period of six months or longer.
Plus at least four from the following list: • self-reported significant impairment of short term memory or concentration • sore throat • tender lymph glands (small swellings under the skin which are part of the immune system) in the neck region or under the armpits • muscle pain • headaches of a new type, pattern or severity • unrefreshing sleep • malaise following effort that lasts more than 24 hours • pains in several joints occurring without joint swelling or redness.
The NICE guidelines on CFS/ME issued in 2007 uses these criteria, and the ‘Oxford criteria’ (see below) as a basis for diagnosis with the addition of palpitations without heart disease and also dizziness, with or without nausea, in the supplementary list of symptoms.
It’s quite possible to have CFS/ME and not have all of these symptoms – an individual’s experience of CFS/ME is essentially unique.