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. 

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. 

Member of Parliament issues ME Order Paper

Liberal MP Carolyn Bennett has issued an Order Paper last week on behalf of patients with ME.

An Order Paper is one of the ways for a member of parliament to ask questions to the Canadian government, and by law, the government has to respond within 45 days.

Here is another way to explain it, coming from the office of Carolyn Bennett:

If a question intended to obtain information from the Ministry involves a lengthy, detailed or technical response, a written question must be placed on the Order Paper. A Member must give 48 hours' written notice of his or her intention to submit such a question. Each Member may have a maximum of four questions on the Order Paper at any one time. Certain restrictions exist on the form and content of written questions. These are based on the Standing Orders and on practice.

The Member giving notice of a written question may request an answer within 45 days and may also ask that oral answers be provided to no more than three of his or her questions on the Order Paper. Such questions are identified with an asterisk in the Order Paper.

The House must be sitting so we will not be able to do so until the House resumes in the fall.

St-Pauls' Liberal MP has been briefed about the situation of almost half a million Canadians,and quickly decided to pass on to action. We the patients in Canada can only be thankful for her gesture.

It is not the first time questions were asked at the House of Commons about ME. In 2009 there was an Order Paper placed by Hon Oliphant and the answered on October 5th. The questions this time are fairly similar, which inadvertantly makes you think that the Conservative government doesn't care about us. Funds have not been allocated, consensus documents have not been approved to be posted on national public health website and that the arthritis research had us covered (insert swear word here).

Carolyn Bennett is a physician who gave up her practice to be a full time politician. She is a well seasoned politician, sits with the liberals and currently is a critic for Aboriginal Affairs & Northern Development and the Canadian Northern Economic Development Agency. She is also Chair of the National Liberal Women’s Caucus. Despite her very busy schedule, she is giving of her time with her constituents and also anybody else who wants to chat with her on Sunday evenings on Facebook. This is how I got the opportunity to approach her in regards to myalgic encephalomyelitis and fibromyalgia, one of the most neglected diseases of them all. On many occasions she asked me to send documents and links to her office. She has been interested and it's nice to see.

For those of you not knowledgeable with the Canadian politics, the Conservatives have been elected for a second term, this time with majority. It is my opinion that they have not been doing a good job in general- especially when it comes to health and science. (And of course I am concerned about health)

So on October 30th Carolyn Bennett filed an Order Paper on behalf of patients with Myalgic Encephalomyelitis and Fibromyalgia. And I want to say thank you. Here are the questions she has been asking:

It is Question 1044 and available in both official languages here

Q-1044² — October 30, 2012 — Ms. Bennett (St. Paul's) — 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?

We should have an answer by mid December.