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IACFS/ME Primer for Physicians

Discussion in 'Action Alerts and Advocacy' started by Andrew, Jan 21, 2012.

  1. Andrew

    Andrew Senior Member

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    I neglected to post this before, and now I urge you to take action on this. If you have read Wikipedia, WebMD, etc. you have seen that they turn a blind eye to the fact that the Oxford criteria studies are CFS in name only. When the fact is, it is not CFS, in any way shape or form. It is not even a valid variation, considering that it only has one symptom. Unless something is done about this, the "common knowledge" will continue to be based on these studies. What is even more disheartening is when our best medical advocates fall into the same trap. Try reading book by our favorite allies that include a review of GET studies. They ALWAYS fail to point out what the Oxford criteria studies really are.

    The IACFS/ME is an organization that is friendly to us. And they are about to release their ME/CFS primer for doctors. If they get this wrong, sitting around here bitching and moaning will not help us a bit. We need to make sure they don't fall into the same trap as all the others. Don't assume they will get it right. That's what we did with CAA, and they ended up promoting the Oxford studies.

    Here is the contact info for IACFS/ME: http://www.iacfsme.org/ContactUs/tabid/118/Default.aspx

    Here is my letter to them. And remember, it is easier to send a letter now, than it is to write endless threads complaining about this later.

     
  2. justinreilly

    justinreilly Senior Member

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    Thanks Andrew, that is a great idea.

    I sent an email, with my own suggestions added. email: admin@iacfsme.org

     
  3. Nielk

    Nielk

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    Andrew,

    Are you sure that they didn't finish it yet?
     
  4. Andrew

    Andrew Senior Member

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    No, I'm not sure. I actually sent my email right after the last CFSAC meeting, at which Dr. Jason mentioned that it's in draft form. I have no idea where it is now. And I regret now that I didn't post my email before.

    I also sent them an email before they even began writing it, asking only for public review when the draft was released. I figured everything would be covered with that. I felt like I got a positive reaction to that. But when I realized it was already in draft, I got very worried. And now I'm even more worried because I got no response to the email I just posted.

    Anyway, thanks for your help with this. I wish more people would take the time to send an email, even a short one. This primer is a golden opportunity to really help us, or screw us even more.
     
  5. Nielk

    Nielk

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    The reason I asked is because I think that Kenneth Friedman from the IACFS/ME was involved in this already a while ago. They had asked artistic people to send in a cover picture for it a while ago. Maybe three months? It just happens that I had just e-mailed him to see how it's going. I haven't gotten an answer from him but when I do, I'll post it here.
     
  6. Andrew

    Andrew Senior Member

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    I imagine they asked for the picture in advance of completion, so it would be ready when they needed it.
     
  7. Andrew

    Andrew Senior Member

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    By the way, I wrote my first email back in February 18, 2010

    The response I got stated that they had just begun, that in several month the draft guidelines would be distributed to international members for review, and that they would ask the committee about patient review.

    I immediately followed up with:

    Since then I've heard nothing.
     
  8. Nielk

    Nielk

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    I just heard back from Kenneth Friedman of IACFS/ME about the Primer for the Physicians.
    He wrote that they are "wordsmithing"? the final section and it should be completed sometime in March.
     
  9. Andrew

    Andrew Senior Member

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    In other words, patient vetting will not be part of the process.
     
  10. Nielk

    Nielk

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    I'm not sure. Should I ask him?
     
  11. Andrew

    Andrew Senior Member

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    Sounds like a good idea. See if you get an answer.
     

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