1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

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

    Messages:
    7,863
    Likes:
    6,258
    UK
    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

    Messages:
    7,018
    Likes:
    10,794
    Logan, Queensland, Australia
    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

    Messages:
    7,863
    Likes:
    6,258
    UK
    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.​

See more popular forum discussions.

Share This Page