Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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ATTN: Aussies

Discussion in 'Action Alerts and Advocacy' started by Snow Leopard, Jul 1, 2011.

  1. Snow Leopard

    Snow Leopard Hibernating

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    South Australia
  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi Snow Leopard, I just posted this to getup:

    We know very little about ME/CFS. Public health decisions are being made from a position of almost complete ignorance. Recently it was changed so that those with ME/CFS can no longer donate blood - to prevent spread of a potential infectious agent. During earlier research I have read that ME was shown to be blood transmissible. More recently a retrovirus was implicated, although this is still hotly debated. More and more are getting sick, very few recover - this problem is getting worse, and we don't even know what causes it.

    In three morbidity studies ME/CFS was rated as on of the three most disabling diseases - in two it was the most disabling disease. In the one in which it was the third most disabling, the first and second were fatal in the very short term. It is more disabling (on average) than AIDS, most cancers, heart disease, kidney failure, chronic obstructive pulmonary disease - the list goes on and on.

    Very few recover fully - under ten percent. Most are sick for life, but many do manage to learn how to adapt to the illness and cope with the worst symptoms, eventually. Many who do that are still disabled. Life expectancy may be twenty to thirty years less than the general population.

    This illness is closely related to fibromyalgia, irritable bowel syndrome, multiple chemical sensitivity, multiple sclerosis, rheumatoid arthritis, and autism.

    The longer it takes to understand this, the greater the cost to society, and the greater the eventual cost to deal with it. We needed more research decades ago, but we can't change the past. We CAN change the future.


    PS I almost missed voting. It is a small box to the left of comments. Bye, Alex
     
  3. Francelle

    Francelle Senior Member

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    Victoria, Australia
    Unfortunately I think the GetUp wording is not the best (some errors) even though I think the idea is excellent. Has this actually started - if that's how it works - lol?
     
  4. Dolphin

    Dolphin Senior Member

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    I haven't read it much but I know other people from outside Australia can vote.
     

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