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. 

Petition to the Health Minister sent.

Over a year after creating the petition to the Canadian Health Minister, I finally printed it out and sent it. It feels good but in the same time I am not holding my breath. The following is the letter sent with it. I have also attached (with permission) Llewellyn King's fabulous piece on CFS, Margaret Parlor from the National ME/FM Action's piece titled Network's Inquiry to CIHR (CIHR stands for Canadian Institutes of Health Research) I felt that both needed to be added- and that the story of neglect and stigma needed to be told.

As a side note I am a terrible editor and notice the mistakes on this letter now... I just wanted to get it done and I am glad it is.

The Honorable Leona Aglukkaq, Tuesday April 2^nd 2013
Health Minister of Canada.

Madam.

I am writing you today to present you with an online petition that has been circulating since February 2012.

The petition request action from the Canadian government to fund research for myalgic encephalomyelitis, also known as chronic fatigue syndrome. I am please to say that 2486 people signed and over 260 commented with pleas for help.

Myalgic Encephalomyelitis is a serious disease for which the number of patients doubled in Canada from 2001 to 2010 according to the Community Health Survey. And yet your January 30^th response to Order Paper #1044 still mentions that the population is stable and that the disease is stable. This is far from the truth.

Typically patients with ME disappear from society and loose the capacity to get heard. Governments do not think it is a serious disease from its old name and physicians do not even hear about this disease while in medical school.

This disease also encompasses many institutes at CIHR which makes it difficult to nail funding. More popular diseases like diabetes, heart diseases, HIV/AIDS and cancer are favored by researchers, making diseases like fibromyalgia and ME left behind. In fact who would spend weeks and weeks applying for a grant for a diseases that is very unpopular and stigmatized when the chances to have it accepted are nil?

You have said many times that health care belongs to provinces, however it does not prevent you from getting involved with HIV/AIDS and also announcing a 100 millions funding for brain diseases.

There are 411 466 patients with Myalgic Encephalomyelitis in Canada (2010) who have no health care, no current Canadian funded research, high amounts of unmet health care needs, and I dare say a highly neglected and stigmatized disease across society, government, science and medicine. It is time that the Canadian government pay attention and start acting.

My February 2012 letter to you is still left unanswered despite receiving an acknowledgement letter from your office in the summer.
It would be worthwile for you to review it.
http://x-tremedenial.blogspot.ca/2012/02/letter-of-advocacy-version-february.html
Along with the petition papers I am attaching a letter titled “Network Inquiry to CIHR” (National ME/FM Action Network) and also an Op-ED by syndicated columnist Llewellyn King, with the hope that it may be useful to you in understanding the neglect and stigma to this disease.

Regards, Kati Debelic,  

Leona Aglukkaq thinks 5 cents per patient for ME research is ok

Answers from the Canadian government have come yesterday. Back in October, Toronto MP Carolyn Bennett tabled a few questions at the House of Commons. The Health Minister answered them orally. you can find the questions, the answers and my comments which were sent back to Dr Bennett's office.

Question No. 1044--

Hon. Carolyn Bennett: 

With regard to Canadians diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): 

(a) what funding has been allocated to research this illness in the last two years;

(b) how does the government propose to encourage Canadian research into ME/CFS so that the level of research into this complex, multi-system illness is commensurate with its extent and impact; 

(c) what is the government doing to develop strategies and programs to meet the needs of Canadians with ME/CFS; 

(d) how is the government ensuring that health professionals are aware of the following documents, 

(i) the Canadian Consensus Document for ME/CFS (ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners), 

(ii) Canadian Consensus Document for Fibromyalgia (Fibromyalgia Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners); 

(e) when will the government perform the following tasks in relation to the Consensus Document for ME/CFS posted on the Public Health Agency of Canada's website, 

(i) improve the location of the document on the website in order to facilitate location of this document, 

(ii) post the French version of this document; 

(f) why is the Fibromyalgia Consensus Document not posted as a Guideline on the Public Health Agency of Canada's website; 

(g) what steps is the government taking to ensure that health professionals, patients, and the public have access to science-based, authoritative and timely information on ME/CFS; 

(h) how soon will the government post other information related to ME/CFS on government websites; 

(i) what is the government doing to ensure access to ME/CFS knowledgeable physicians and appropriate health care on a timely basis and how are they working with the provinces, territories, professional organizations, educational institutions and other stakeholders to meet these needs; 

(j) how is the government working with stakeholders to deal with other needs of Canadians with ME/CFS shown by the 2005 Canadian Community Health Survey (CCHS) including, 

(i) reducing the levels of unmet home care needs, 

(ii) reducing the levels of food insecurity, 

(iii) increasing the sense of community belonging experienced by Canadians with this condition; 

(k) how will the surveillance report on ME/CFS, prepared from analysis of data collected from the 2005 CCHS, be used to improve the situation for Canadians with ME/CFS; and 

(l) how will the government monitor the extent and impact of ME/CFS and these other conditions on an annual basis given that questions regarding ME/CFS, Fibromyalgia and Multiple Chemical Sensitivities were dropped from the CCHS after 2005? 

Hon. Leona Aglukkaq (Minister of Health, Minister of the Canadian Northern Economic Development Agency and Minister for the Arctic Council, CPC): 

Mr. Speaker, the government supports provincial and territorial health care delivery through fiscal transfers and targeted programs. Unlike previous governments that balanced their books on the backs of the provincial and territorial governments, we have committed to a long-term stable funding arrangement that will see health care transfers reach historic levels of $40 billion by the end of the decade. Health transfers from the federal government to provinces grew by 40 percent between 2005-2006 and 2012-2013. Our investments in health care will help preserve Canada’s health care system so it will be there when Canadians need it. 

With respect to research and awareness, in May 2008, the Public Health Agency of Canada, PHAC, and the Canadian Institutes of Health Research, CIHR, coordinated a meeting with the Myalgic Encephalomyelitis Association of Ontario and other stakeholders to explore ways to increase knowledge and awareness of myalgic encephalomyelitis/chronic fatigue syndrome, ME/CFS, and to address research needs. This meeting led to the first Canadian national scientific seminar on ME/CFS in Calgary in November 2008. This seminar was held to raise awareness, increase medical practitioners’ knowledge, and improve medical treatment for patients with ME/CFS. An article on this seminar was published by PHAC and can be found at http://www.phac-aspc.gc.ca/publicat/cdic-mcbc/29-3/pdf/cdic29-3-6-eng.pdf. 

CIHR has invested $28,000 since 2009-2010 in research related to ME/CFS. In addition, CIHR’s Institute of Musculoskeletal Health and Arthritis, IMHA, has set aside a separate pool of funds in its undergraduate studentship program for myalgic encephalomyelitis and fybromyagalia. Details are available at http://www.researchnet-recherchenet.ca/rnr16/vwOpprtntyDtls.do?prog=1699&view=currentOpps&org=CIHR&type=AND&resultCount=25&sort=program&all=1&masterList=tru.e.

Surveillance of ME/CFS and fibromyalgia is undertaken by PHAC in looking at trends in disease prevalence in order to inform program and policy decisions. Data from the 2010 Canadian Community Health Survey, CCHS, allow PHAC to produce scientific surveillance information on ME/CFS, raise awareness and support efforts to increase understanding of the impact of these conditions. 

The questions on ME/CFS, fibromyalgia, and multiple chemical sensitivities were asked of all CCHS respondents in 2010. Analysis of the 2005 and 2010 data demonstrated that there were no changes in the prevalence of these conditions in this five-year period; therefore, maintaining the data collection on these conditions every four years is appropriate. 

The Public Health Agency of Canada's website is aimed at delivering information and services to users that are relevant and applicable to its mandate and that of the Government of Canada. While PHAC facilitates the sharing of clinical information via its website, it is the responsibility of health care professional associations and medical bodies to ensure that relevant clinical information is available to their members. The following documents are available at the links indicated below: Canadian Consensus Document for ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners at http://www.phac-aspc.gc.ca/cd-mc/az-index-eng.php#C; and Canadian Consensus Document for Fibromyalgia: A Clinical Case Definition and Guidelines for Medical Practitioners at http://www.phac-aspc.gc.ca/cd-mc/az-index-eng.php#F.

http://www.phac-aspc.gc.ca/publicat/cdic-mcbc/29-3/pdf/cdic29-3-6-eng.pdf

And here is my reply to the office of Carolyn Bennett, MP

Thank you for giving me the opportunity to comment on remarks made by Hon. Leona Aglukkaq as it relate Order Paper 1044.

i am one of at least 411 500 patients with myalgic encephalomyelitis in Canada. There are also over 450 000 patients with fibromyalgia as well. These 2 disease are the most neglected of all diseases. Federal funding for research is abysmal. moreover, rheumatologists want to get rid of fibromyalgia as diseases they treat, leaving patients high and dry with family practitionners that have no time, no interest, and no knowledge. ME does not belong to any medical speciality and a bit of proding around will reveal that patients know that most physicians want nothing to do with their disease. I have a letter from a rheumatologist saying he has no time nor interest to deal with ME patients. This disease needs to be assigned to a medical speciality (not psychiatry) or a new one needs to be made. We are complex patients with multi-system issues. We need evidence-based medicine and treatments. Current trends in the field is that this might well be an auto-immune condition. 

The population of ME patients has doubled from 2001 to 2010, according to the community health surveys. Why is no one worried? Why is this not a public health emergency? Why is no one investigating this? If this were HIV/AIDS, the canadian government would give more millions, on top of what this disease is already getting. 

Cost to society from these diseases are counted in billions. Loss of productivity, disability benefit, welfare, health care costs. These diseases are not going away and for the most cases, they are lifelong. It is very ironic that thy affect mostly women. 

Federal funding for research for ME, as said by Mrs Aglukkaq totals to 28,000$ since 2009-2010 or about 14 cents per patient, or roughly 5cents per year. Is that something to be proud of? Compare this to the funding that patients with MS get, cancer, HIV/AIDS, diabetes. 

We patients with ME and fibromyalgia have been failed and left behind. Research is not happening, in fact most researchers feel it would be a career suicide to research us. We are multi-system diseases which encompass immunologic, endocrine, musculo-skelettal, nervous system and more. The CIHR model doesn't work for us. 

As for the transfer to provinces and Canada Health Act, again it doesn't work for us. Patients are failed, and many of them have given up on seeing doctors who can't or are not willing to treat their condition. When I write to my province about health care for my disease, they send me back to the federal. Moreover because ME does not belong to any medical speciality, no one knows what to do. Medical schools are not prepared to teach this disease professors have no idea. Meanwhile, we are waiting for 2014 when the next question will be asked about ME in the Community Health Survey. Last question was in 2010.

Leona Aglukkaq has chosen to respond verbally to this Order paper because it allowed her to not answer questions about unmet needs, food insecurity and many other questions Dr Bennett prepared. It allowed her to cut corners, and on top of that took advantage to the fact of the Christmas holidays at the House of Commons to delay answering by 6 weeks. 

Today I am asking for action.  I have been sick and unable to work for 4 years, my condition is worsening and not only do I want my life back, I want to prevent others from getting sick with this disease.