5 things you need to know about myalgic encephalomyelitis.
1- The Name
Myalgic= sore muscle
encephalo= brain
Myel= spinal cord
Itis= inflammation
Patients call it M.E.
The other name for the disease is "chronic fatigue syndrome", a very political move by the CDC to minimize the severity of the illness. No disease is called by a symptom. For instance, tuberculosis is not called chronic cough syndrome. If you must use the term "chronic fatigue syndrome, please do not shorten it by saying "chronic fatigue".
2- The illness:
Patients often present with a flu-like onset or a viral onset, like getting mononucleosis for instance. and they don't recover. Think about getting the worst flu with the worst hangover, day, after day, after day. while some people have a relapsing/remitting illness, mine is progressive. I have no respite and gradually get worse.
While it affects more women, especially in the middle of their lives, men and children are also touched by the disease.
The laudry list of symptoms we get is varied and often seem benign but is not. The most important symptom is called "post-exertional neuro-immune exhaustion" or PENE which means if we are overexerting (go beyond our limits, sometimes just having a shower)- we get a worsening of symptoms that is very debilitating, and this can last for days, weeks or even months.
Headaches, sore joints or muscles, autonomic nervous system dysfunction (blood pressure dysregulation for instance), immune abnormalities (either we get sick all the time or in my case haven't had a single cold in over 5 years), viral reactivations (EBV, shingles, HSV, CMV, HHV-6), crushing fatigue, cognitive dysfunction, pain and inflammation and GI disturbances to name a few. There is no FDA approved treatment for ME, and in fact just a handful of experts are available around the world.
While patients rarely officially die of ME, unofficial records show that patients die 20 years early of cardiac events, cancer and suicide.
There has been documented epidemics of ME, in the mid 1980's. One in Incline Village, Nevada, affecting over 200 people and another one in Lyndonville, NY, affecting mostly children. In both instances, the CDC who investigated decided that both patients and physians were "hysterical" and that there were no epidemics.
This decision from the CDC sadly gave permission to governments, scientific and medical bodies to ignore the disease and not fund research, and patients still pay the price in 2013.
3- The Social Stigma
We are very often and wrongly seen as faking our illness, and malingering in order to get social or insurance benefits. We are seen as lazy people who don't want to work.
Physicians do not want to care for us, and since the disease belongs to no medical speciality, specialists do not want to follow us if ever consulted.
Scientists are being told it would be career suicide if they ever wanted to study our illness.
A prominent group of psychiatrists in the UK portray our patient population as having "false illness beliefs", and caused by childhood abuse. They also spread propaganda like information like cognitive behavioral therapy and graded exercise therapy as the only treatments for our illness. (Researchers in California proved that exercise induce relapse and a cascade of genetic changes producing massive inflammation with minimal exercise).
With patients becoming housebound and bedbound, isolation worsens, and we continue to be invisible to society, to the physicians and the government.
4- The Neglect.
HIV/AIDS was first discovered in 1982. With billions of dollars in research funding, patients with HIV can now live a fairly normal life in 2013. Through governement campaigns, the stigma of HIV is greatly reduced and patients get respectful care regardless of their social backgrounds, being gay or IV drug user.
M.E. epidemics were docuented in 1984 in several areas around the world. The governments decided it was not epidemics other than mass hysteria. Abysmal amount of funding in nearly 30 years results in an increasing population of sick patients who are for the most part unable to work.
In Canada, a community-based survey estimated the number of patients with ME to be 200,000 in 2001 and 411,466 in 2010. And yet, there is no extra effort to find out more about us. ME is currently funded at a rate of 5 cents per patient per year in Canada. Parkinson's disease is funded at a rate of 400$ per patient per year. What is your life worth?
5- The Impact
Billions of dollars in lost productivity and government revenues
Billions of dollars in health care costs and government benefits.
Shattered careers, shattered dreams, loss of income and savings for the future.
Broken, disrupted family lives
Patients become invsible, it's like we don't exist.
Remember that this is a lifelong illness and only a minority of patients make a complete recovery.
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