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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Did you know someone with ME/CFS who died? Contribute to this survey of mortality in ME/CFS

Discussion in 'Other Health News and Research' started by Sasha, Jul 9, 2014.

  1. Sasha

    Sasha Fine, thank you

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    Very important new project announced on Jennie Spotila's blog:

    http://www.occupycfs.com/2014/07/07/mecfs-mortality/

    It's being run by researchers at DePaul University (Dr Leonard Jason's place) and with Billie Moore of the NJ CFS Association, who lost her son to ME by suicide after 20 years of illness.

    As Jennie points out, it's common for doctors to say that ME isn't fatal. A very few people have had ME/CFS on their death certificates but we don't know if ME causes earlier than normal death through cancer, heart problems, and so on, and we don't know the suicide rate. We need to know these things and governments aren't doing this research.

    I don't know if this is a US-only project - I've posted that question (still in moderation) on Jennie's blog. I suspect it would be - to get mortality rates, you need to know the population you're sampling.
     
    Tito likes this.
  2. alex3619

    alex3619 Senior Member

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    There was one study of attempted suicides in Australia, not sure if it was published. The finding was one in ten had done so, and one in six for long term patients (I think, its been over a decade since I read this).
     
  3. Sasha

    Sasha Fine, thank you

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    Billie has answered the question about whether the survey is worldwide - it is - so please complete it if you're aware of any PWME who have died. Billie writes:

    The Mortality Study is open to all worldwide, and we have had a number of responses from Europe. We have two questions asking where the respondents live and where the deceased persons lived.​
     

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