Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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ME/CFS Disease Burden - Advocacy

Discussion in 'General ME/CFS News' started by Old Bones, Jan 10, 2017.

  1. Old Bones

    Old Bones Senior Member

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    Here's the latest news from the National ME/FM Action Network -- an email sent to Canada's Minister of Health, building on an article about disease burden and NIH funding published a few days ago. The ME/FM Action Network expressed their thanks to Mary Dimmock, Arthur Mirin and Lenny Jason for calculating the "DALY" for ME/CFS, and for writing this important document.

    The linked "New article" below is well worth a look.


    "Minister Philpott

    An article entitled "Estimating the disease burden of ME/CFS in the United States and its relation to research funding" was released on Friday. This article

    · estimates Disability Adjusted Life Years (DALY), a recognized measure of disease burden, for ME/CFS in the US,

    · compares the ME/CFS DALY to selected disease DALY's previously published by the NIH, finding that the ME/CFS disease burden is greater than the disease burden for many conditions including MS, Autism and HIV/AIDS,

    · adds ME/CFS to a chart plotting the NIH funding of various diseases against their disease burden, making it visually obvious that ME/CFS research is seriously underfunded, and

    · estimates fair NIH annual funding for ME/CFS at $188M, more than 25 times what it currently receives.


    The ME/CFS community has long felt that the disease burden of ME/CFS is significant. This article gives substance and perspective to those feelings.

    We would like to see the government of Canada calculate Canadian DALY's. In the absence of such figures, we suggest using the US figures, scaled to represent the Canadian population. We would also like to see the DALY's aligned with statistics on various resource allocations by disease in order to inform discussions of fair funding levels.

    DALY's represent a combination of years lost due to disability and years lost due to death. We would like to see the Health portfolio be much more proactive in reducing both of these components for ME/CFS. This can be done through more research, more appropriate clinical care, easier access to disability supports and greater public awareness. We are pleased that CIHR has been proactive recently in encouraging ME/CFS research. We hope that this continues and that other areas become proactive as well.

    The National ME/FM Action Network has been working on behalf of Canadians with ME/CFS and Fibromyalgia for over 20 years. As the article shows, ME/CFS has a significant burden of illness. We suspect that Fibromyalgia has a similar burden. In the past year, we have been involved in only one meeting with you or Ministerial staff. We believe that it is time to meet again.

    New article: https://oatext.com/Estimating-the-d...ates-and-its-relation-to-research-funding.php

    Previous NIH article: https://report.nih.gov/info_disease_burden.aspx
    --

    Margaret Parlor

    President

    National ME/FM Action Network
    512, 33 Banner Road
    Nepean, ON K2H 8V7 Canada
    "
     

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