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.

Bio-medical research for ME/CFS

Recently a canadian politician, Carolyn Bennett, MP in the Toronto area, asked me what was going on in the ME/CFS research world, south of the border. Dr Bennett is a medical doctor, who has moved on to the political world. She is part of the opposition in the House of Commons and has been giving of her time for her constituents, notably being in a Facebook chat every week to whoever wants to talk to her.

I wanted to talk to her. I have things to say about health care, health research as it pertains to Canada. I want to understand the politics, and I want to help politicians understand the situation of 411 500 of us stuck with ME/CFS.

So when, after a few weeks of exchanging chats, she asked me what was going on in research, I saw it as an opportunity.

Here is what I wrote. It came mostly by memory. I think I covered the essentials, though some will think I don't have the name of the disease right (always a contentious topic), or I don't have the doctors right. I gave her a tour of the specialists who have been active recently in the field of ME, and I mentioned the work worthy of mentioning. Feel free to use this work for advocacy purposes.

Hello Carolyn. As promised, here is a "brief" explanation of what is going on in research in the US and around the world for ME/CFS research (myalgic encephalomyelitis aka chronic fatigue syndrome). By all means it is not exhaustive but it is the essential of what is currently going on.

1) A paper by prominent virologist Ian Lipkin is due to publish On September 18th. It is about the association of ME/CFS with retrovirus XMRV and/or polytropic murine leukemia virus.

2) CFI- stands for Chronic Fatigue Initiative. A private benefactor gave 10 millions $ for ME/CFS research last year, and this money is being used for various projects including epidemiology, biomarkers, case definition, etc. More info: http://cfinitiative.org/Dr Klimas, immunologist in Miami Florida is deeply involved with these projects. She has dedicated most of her career to patients with ME/CFS. She tests pts' Natural Killer cell function which is always very low for us. (testing which is not done in Canada) NK cell function btw is also low in HIV/AIDS patients.

3) Dr Dan Peterson: Is an Internist in Incline Village, Nevada (Tahoe) where an epidemic of ME/CFS started in 1984. Dr Peterson Founded Simmaron Research and he has collected thousands of blood and CSF samples of patients with ME/CFS. An abnormally high number of his original cohort went on to have rare lymphomas, notably mantle cell lymphoma. He treats patients with various anti-virals and also Ampligen, a drug that has been stuck in clinical trials for decades.He works with Open Medicine Institute and Phanu (Australia) with genetic and immunology projects. http://simmaronresearch.com/

4) Dr David Bell from Lyndonville NY is also another internist in a small town in NYC where there was an outbreak of ME/CFS in children inthe 1980's. These outbreaks were deemed "hysterical" by the CDC btw. Dr Bell is now retired but has a website with many valuable tools and stories. http://www.davidsbell.com/

5) Open Medicine Institute (Dr Andy Kogelnik) Dr Kogelnik is an infectious medicine dr who is currently preparing multi-center clinical trials with Rituximab for patients with ME/CFS following the work of Dr Fluge and Mella in Norway. Open Medicine Institute is located in the Silicon Valley and this dr has been gathering the gems of all scientists in genomics, computational biology, system biology, social networking and more and building on. Dr Kogelnik previously worked under Dr Montoya (below) with the Valcyte study. The research is starting, however federal funding is very difficult, I believe he will ask patients and the private sector to fund his research. He is collaborating with the CDC on an epidemiology study amongst other things.
www.openmedicineinstitute.org

6) Dr Montoya (Stanford University) is also an infectious disease dr. He is famous for his Valcyte study on patients with ME/CFS. He proved that Herpes virus IgG titers could be reduced by giving Valcyte. Patients with ME/CFS most often have viral reactivtion, especially EBV, HHV-6 and CMV. Viral titers are not done in Canada unless you have HIV. Personally I have chronically reactivated EBV. I also have developped bilateral shingles on the feet which drs couldn't believe could happen. Dr Montoya has a very informative lecture on you tube: http://www.youtube.com/watch?v=Riybtt6SChU&feature=youtube_gdata_player and his website informs about what he is up to these days: http://chronicfatigue.stanford.edu/ He is very active in research and patients from the Bay area are constantly recruited.

7) Dr Bateman (Salt Lake City) has been doing a lot of CME work. She is a GP specializing in ME/CFS. She collaborates with Dr Light who has proven that ME/CFS and depression were 2 separate entities. His stunning paper maybe of interest to you: http://www.jpain.org/article/S1526-5900(09)00574-4/abstract and here: http://www.cfids.org/cfidslink/2009/080503.asp
Dr Bateman's work can be seenhere : http://www.medscape.org/viewarticle/759095

8) IACFSME (International Association for CFS/ME) is the professional group which meets every 2 years, last time was in fall 2011 in Ottawa. www.iacfsme.org It is unclear how many canadian physicians attended this conference.
This year they have issued a "primer" for physicians, which you can see here: http://www.iacfsme.org/Home/Primer/tabid/509/Default.aspx

9) PHANU (Population Health and Neuroimmunology Unit) Dr. Marshall-Gradisnuk/Dr Don Staines are doing ground-breaking research on autoimmunity as it pertains to ME/CFS, including research on the NK cells. They recently presented at a conference in London called "Invest in ME"- they collaborate with Dr Kogelnik, Peterson and Dr Klimas in Miami.

Immunological abnormalities as potential biomarkers in chronic Fatigue Syndrome/Myalgic Encephalomyelitis. http://www.translational-medicine.com/content/9/1/81

10) Invest in ME- is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.
Their goal is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of M.E. This should lead to the development of a universal "thumb-print" test for diagnosis of M.E. and, subsequently, medical treatments to cure or alleviate the effects of the illness.

Please view their journal http://investinme.org/InfoCentre%20-%20Journal%20of%20IiME.htm

And video conference (much recommended) can be ordered for 30$ http://investinme.org/InfoCentre%20Education%20Homepage.htm

11) Recent papers of interest:

A) "Dinstinct Cerebrospinal fluid proteomes differentiate post treatment Lyme disease from Chronic fatigue syndrome"http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287

Lyme disease is another neglected disease which leaves patients Without ressources or health care in Canada. This fascinating paper shows they are differnet diseases with overlap.

B) VanNess JM, Snell CR, Stevens SR, Bateman L, Keller BA. Using serial cardiopulmonary exercise tests to support a diagnosis of Chronic Fatigue Syndrome. Med. Sci. Sports. Exerc. 38(5), 2006.

The work of Staci Stevens and Christopher Snell Has been critical in proving that indeed I was sick and disabled. Using consecutive days cardiopulmonary exercise tests, patients with CFs cannot reproduce results on the second day, which features the "post exertional phenomenon" of our illness.

http://www.research1st.com/2011/11/18/pfl-testing/ Obtaining disability insurance is critical for us amd very difficult to get since insurance companies like to think this is all in our heads and there are no biomarkers. Well in Canada, there aren't. this has to stop.

C) The Rituximab paper. http://www.ncbi.nlm.nih.gov/pubmed/22039471
an important story that has to be told. The same researchers will try Rheumatologic drug Enbrel on the patients who have not responed to Rituximab.

It is to note that I have written to 14 different rheumatologists in Canada asking them to participate in multi-center trials with Rituximab or give it to me as compassionate access. Suffice to say that rheumatologists do not want to get involved in the care of pts with ME/CFS.

D) Impaired cardiac function in Chronic fatigue syndrome measured using Magnetic Resonnance Cardiac tagging.http://www.ncbi.nlm.nih.gov/pubmed/21793948 More proof we are really sick.

Finally, all these efforts are being counteracted by a powerful lobby of UK psychiatrists with vested interests with governments and insurance companies telling our doctors, the CDC and our insurance companies that our disease is due to abuse as a child, that it is treated with CBT (cognitive behavioral therapy) and GET ( graded exercise therapy). This same group of physicians in fact came to Vancouver in the mid 1990's and told our dr we had "false illness beliefs" effectively closing a clinic held by Dr Carruthers. Following this, one of our long time patient mentioned there were many suicides.
Flawed psychological studies are being published by these psychiatrists, and allowed to circulate in the papers like propaganda.

In Canada, very few physicians treat ME/CFS or help with disability insurance.

1) Dr Alison Bested is leaving her practice in Toronto and accepted a position of medical director at the Complex Chronic Diseases in Vancouer, a 2 millions funded by BC- covering mostly Lyme, ME/CFS and Fibromyalgia. She will start October 1st, and the clinic has not opened yet.

2) Dr Ellie Stein, Calgary, psychiatrist who can assure that this illness is not psychiatric in nature, though depression can be rampant due to the extreme neglect. http://eleanorsteinmd.ca/
she just published in the Canadian Journal of CME. 

3) Dr Bruce Carruthers, Vancouver, internal medicine, has had a very very long carreer. He is the authors of 2 definition papers
http://www.cfids-cab.org/MESA/ccpccd.pdf
And this new ME ICC consensus: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full worthy of your time.

4) Dr Byron Hyde http://www.nightingale.ca/ is in private practice, offering careful diagnosis and legal proof of disability.

5) Dr Gordon Broderick is a scientist (computational biology) working in Alberta and collaborating with Dr Nancy Klimas in Miami.

I hope that these can be of assistance to you. Again, there is 0$ federal research for ME/CFS, the Community Health Survey 2010 shows 411 500 of us are affected, 205% more than in 2001. Mrs Aglukkaq has failed to respond adequately to my letters.