New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Order Paper #1044 answers by Canadian Health Miniser due today

Discussion in 'General ME/CFS News' started by Kati, Jan 28, 2013.

  1. Kati

    Kati Patient in training

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    SOC and taniaaust1 like this.
  2. Sparrow

    Sparrow Senior Member

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    It's great to see motion on these things, even if actual progress is slow. It gives me hope that eventually we will be heard.

    I wrote an e-mail to Carolyn Bennett today, to thank her for her efforts on our behalf. I think that ME patients sometimes get a bad reputation for being angry or bitter or jaded, or for bashing doctors. I would like to replace that with a reputation for huge outpourings of gratitude for the people who help us.
     
    Kati likes this.
  3. Kati

    Kati Patient in training

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    I agree Sparrow and I need to say that MP Carolyn Bennett has gone out of her way to ask these questions, being the aboriginal affairs critic for the opposition party. I am thankful to have her.
     
  4. Kati

    Kati Patient in training

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    The answers are in (if we call them answers :-() I also wonder how someone can make 2mistakes in the same word: fybromyagalia (ouch)

    28 000$ in research fund since 2009-2010 results in 6.8 cents per patient for ME research in Canada, and 2cents per pt per year since 2009.

    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...tCount=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.
     
  5. Sparrow

    Sparrow Senior Member

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    "it is the responsibility of health care professional associations and medical bodies to ensure that relevant clinical information is available to their members"

    So who do we need to talk to to try to get doctors to replace their outdated understanding of this illness with more up to date information? ...Or can we, until there's some major breakthrough that calls attention to us?
     
  6. Kati

    Kati Patient in training

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    Hi Sparrow, tough questions especially here in British Columbia when our provincial health website mentions only CBTand GET as only treatments for ME and FM and discussing childhood abuse.

    The Canada Health Act has failed us patients with ME, because then the Federal is saying it's not up to them, they give money to the provinces. The provinces send us back to the federal because more research is needed, which is obviously not happening.

    The fact that no medical speciality wants to touch us with a 10 foot pole decreases accountability, and the fact that public health is doing a poor job at monitoring the numbers (every 4 years single question for the community health survey, saying the numbers are steady- uggh if there was a 24% increase in numbers of HIV patients, it would be a different game) I feel we are stuck in the Bermuda triangle. Moreover, from 2001 to 2010 the ME population increased by 205%.

    So where do we go from here I wonder?
     
  7. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    A doubling period of about 10 years indicates a growth rate of about 7%, presuming it is constant and not approaching a limit. What do they say the prevalence is? Double that for 2022, quadruple it for 2032 etc. Our economies do not grow this fast, its China scale growth in a disabling disease.
     
  8. Kati

    Kati Patient in training

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    Thanks for your input Alex, we have an estimate of 411 500 patients with CFS (as stated by the 2010 Community Health Survey question) for a total population of roughly 34.5 millions. In 2001 the estimate was 200 000.
     
  9. Purple

    Purple Bundle of purpliness

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    How did they arrive at this number? And how reliable is it - especially given the high rate of misdiagnosis and lack of understanding of the illness?
     
  10. Kati

    Kati Patient in training

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    The Canadian Community Health Survey is a highly respected statistical survey, where the samples allows them to calculate fairly accurately represent numbers for the whole country. Only one question about CFS is asked,every 4years :have you been diagnosed by a dr with chronic fatigue syndrome. Yes or no. The other questions pertains to other chronic diseases. Look it up
     
  11. Purple

    Purple Bundle of purpliness

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    thank you :)
     
  12. Kati

    Kati Patient in training

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