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. 

Letter to our canadian health minister

The honourable Leona Aglukkaq, Canada Health Minister.

Recently I have heard you assigning 5 millions into a clinical trial of “liberation therapy” for multiple sclerosis patients. These patients were going out of country to get this procedure done, and following their request to offer the treatment here in Canada, you agreed and allocated some money.

I am a patient with ME/CFS, (myalgic encephalomyelitis/ chronic fatigue syndrome) which is a neurologic disease as per the World Health Organization. This disease get very little respect in the medical world and very few physicians are knowledgeable about it. In fact I would be surprised that medical students get appropriate teaching about it. ME/CFS can be just as severe as someone with congestive heart failure, end-stage AIDS or progressive MS.

Patients with ME/CFS are usually left to their own mean, receive no medical care and can be very disabled by this illness. The burden it causes to society is enormous, from loss of wage, to medical costs to disability pension payments. Patients are also often discriminated against due to the name of this illness, since most physicians who haven't received any education for ME/CFS think this is quite a benign illness. Lots of patients will report that their physician do not take their symptoms seriously, like chest pain, headaches and other neurologic symptoms. In fact the 3 main causes of deaths for ME/CFS patients are cancer, cardiac events and suicide. Suicide happens due to the lack of support, medical care and beliefs that us patients are malingerers.

Mistreatments have happened in the past with MS patients who would be hospitalized in psychiatry and diagnosed with hysterical paralysis. Recent studies have shown that ME/CFS is not a psychiatric illness, does not get treated with cognitive behavioral therapy or graduated exercise therapy, and may be of infectious origin, from the work of Lombardi et al at the Whittemore-Peterson Institute and Shutzer et al.

http://www.sciencemag.org/content/326/5952/585

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0017287

Statistics Canada counted over 413 000 ME/CFS sufferers in 2010, a 25% increase compared to the last statistics in 2005. Yet recent studies have shown that 80% of ME/CFS patients do not get diagnosed as such and usually discounted as simple fatigue. The amount of money awarded for our illness has been abysmal, lower than 1 million dollar in total in the last 10 years, and most research have been of psychological or behavioral nature. In contrast, there are between 50 and 75 000 patients with MS in Canada that receive millions and millions of dollar in research every year.

Immunologists have proven immune activation and changes in cytokines, natural killer cell function and chronic viral reactivation which are totally ignored in Canada. Moreover, patients with ME/CFS may have an infectious retrovirus as per Lombardi et al.

Patients with ME/CFS get no healthcare here in Canada and no research. The numbers of patients are growing rapidly, however their concerns are still discounted. It is time that our governments who have once received our taxes wake up and start paying attention and stimulate research in our field. Moreover, it is time that the medical field wakes up and that more physicians get trained in caring for us. The fact that this complex illness belongs to no medical specialty is a travesty.

Currently in the USA a clinical trial (phase 3) of Ampligen is going on. Ampligen, an immuno modulator has been in the market for over 15 years now- yet it hasn't been approved to use. Patients should be offered this medicine so they can get relief from their illness and perhaps return to work. Patients should have the same access to health care as patients with cancer or HIV/AIDS.

Today Mrs Aglukkaq I am requesting your attention. Canada is hosting the international ME/CFS conference in Ottawa in September, yet, beyond our community, no one knows about it. I am requesting that you stimulate research funding for ME/CFS and recommentd physicians to get educated about our disease, and start offering treatments like Immunovir, Rituximab (Norway study)  or Ampligen and anti-virals such as Valtrex and Valcyte (Lerner, Montoya). Pathogen studies like XMRV and other Gammaretroviruses should be of great concern for our governments and should be researched with great care.

It is time that our Canadian government pays attention to over 413 000 citizens who are sick and get no health care.

Thank you,  Kati sick for 2 years and 8 months. 

Kati Debelic