HAWMC Day 6: Letters to Myalgic Encephalomyelitis

Today I look at my computer screen trying to express what I would say for this assignment. I am supposed to write to my disease. What would I say? 

And honestly, other than my usual angry rant, which easily comes 10 times daily, likely more, and I just don't know what I'd say to my disease. 

See, being a nurse, I understand that getting sick is basically luck of the draw. When I got sick I was an oncology nurse. I also did bone marrow transplant. I have seen health nuts coming down with cancer, and the whole spectrum of human being types that we find on earth. No matter what you are doing with your life and your health, there is a chance that you come down with cancer. After all, we have to die of something. That's the rule, even if you die of old age. You die of that. 

What I vehemently object to is having this disease that no one sees as being serious, including physicians and governments. 

I have said it before and I will say it again. I would rather have cancer, HIV, tuberculosis, leprosy, fill in the blank, than have myalgic encephalomyelitis. Most people will protest: " Nah, you don't want to have cancer, my relative so and so got it and had the most horrible experience, was in pain, etc... "

In Canada and probably all around the world, governments fund cancer and HIV more than any other diseases. And then families of the deceased give funds to cancer foundations. In Vancouver, the BC Cancer Agency, a provincial program, owns at least 3 different buildings. One is made of glass. A research program has its own building. They probably have primates over there but I could be wrong. Research happens as patients come. And then, there are volunteers to go and pick up the patients at their door steps, and take them home when  they're done. Call this valet service. The day you get cancer, you are a hero. Neighbors will bring you baked dishes and ask you if your lawn needs to be mown. 

As for the HIV program, I hear it's just about the same. Drug cocktails will be given to IV drug users. The BC HIV/AIDS program is the lucky recipient of having a world renown physician advocate, Julio Montaner, and probably just him alone brings millions for HIV research. When the government do not have money for diseases like ME, they announce millions for HIV research the next week. 

Dr Nancy Klimas is a Miami Immunologist and well known ME expert. In her early years she cared for HIV patients. Over the years she has seen the same patients getting better and better as the anti-retroviral drug cocktails got better. She says that if given the choice between having HIV or ME, she would choose HIV. 

There is something unbelievably cruel when you go to the doctor and they tell you there is nothing they can do for you, there is no specialist to send you to, because you have this disease called myalgic encephalomyelitis (they wouldn't say that, they would say "chronic fatigue" ) that hasn't been accepted by the governments and even by the medical schools. You got to be kidding me. I got sick at 39. Some got sick in their teens, and never launched out of the nest or finished high school or landed a job. They are still living at home, in a dark quiet room, supported by their parents, bedridden and unable to attend their own care. The parents are likely struggling to get respite care because government home care do not come for a disease like this. 

So all diseases are not equal, therefore all citizens are not equal. This is discrimination. 

Just for fun (DId I just say that?)  here is a list of disease and how much funding they get per patient per year. 

Disease	per patient funding Apr2010 to Mar2013	Canadians affected CCHS 2010
Parkinson	$399.49	39,000
Alzheimer	$237.71	111,500
Muscular dystrophy	$157.87	26,000
Epilepsy	$78.89	134,500
Multiple Sclerosis	$73.09	108,500
Tourette	$53.54	18,000
Crohn	$47.47	102,500
Cerebral palsy	$44.07	36,000
Diabetes	$38.93	1,841,500
Spina Bifida	$26.61	35,000
Heart Disease	$25.25	1,431,500
Dystonia	$20.26	15,500
Bronchitis, Emphysema, COPD	$9.12	805,000
Asthma	$6.90	2,246,500
Arthritis	$5.85	4,454,000
Fibromyalgia	$1.38	439,000
Chronic Fatigue Syndrome	$0.35	411,500
Multiple Chemical Sensitivities	$0.01	800,500

Note that cancer and HIV/AIDS is not being counted, as the numbers come from the Canadian Community Health Survey, which monitors chronic conditions. However I can tell you there is about 70 000 cases of HIV/AIDS in Canada. Funding is counted in billions.  

So there you got it. I managed once more to rant and be frustrated. Advocacy and doing anything is just so, so hard for patients with ME. We have cognitive dysfunction and just sitting at the computer is an effort. It is just another reason why we are so behind and not heard, because we are just too sick to just show up. 

And this brings me back to the beginning, what would I say to my disease? Nothing. I got nothing to say. 

HAWMC Day 2: 5 things you need to know about myalgic encephalomyelitis.

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.