When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year ...
Discuss the article on the Forums.

Cohorts - Letter to the IACFS/ME

Discussion in 'Action Alerts and Advocacy' started by CBS, Jan 4, 2010.

  1. CBS

    CBS Senior Member

    The importance of maintaining credibility

    A key issue here is the notion of false positives based upon what? The Canadian Criteria, Fukuda, etc.? I think the Jason article gets it right. It does not try to assume that we have ONE set of diagnostic criteria at this point in time. All Jason says is that when using the CDC criteria, you get 38% of those diagnosed with CFS as actually having Major Depression, not CFS. The other point to keep in mind is that the CDC criteria yields an estimated prevalence of nearly 4 times that of the population estimates using other Criteria (I need to verify and I also need a reference but if I recall correctly, this was measured against the Canadian Criteria as well).

    We need to be careful when citing numbers and stick using figures we can back up. Doing so can only help with our credibility.

    Now I really am checking out for a few days (feel free to remind me to stop being an "idiot").
  2. Hysterical Woman

    Hysterical Woman Senior Member

    East Coast
    Shane - get thee to bed!!!!
  3. Kati

    Kati Patient in training

    Shane, what a great job you did. First you got Dr Friedberg's attention, but the fact that he forward that to all the board members and perhaps the most prominent researchers is grand!

    To get motion approved takes a little time, that is agreed, but the fact that the discussions are happening NOW, helps people being aware and change their practices for their future researches.
    Think about it, do you want to be in the group that publishes using a recognized, standard cohort, ie Canadian consensus, or would you actually prefer being careless, pick Reeve's disease cohort, and get cricticized about the cohort choice, and being told your study is invalid- the research grant givers won't be happy about that.

    The rules are changing, the community, the researchers are talking. The commnents are piling in blogs, journals online, major papers. There will come a day, very soon, where Wessleys, Reeves, and their gangs, will be all by themselves in a sandbox while the rest of them researchers have long got on with the program.

    The wheel is turning- the smart one have already jumped on board.

    ETA sorry for the late post, had laptop issues and mostly horizontal these days.
  4. mezombie

    mezombie Senior Member

    East Coast city, USA

See more popular forum discussions.

Share This Page