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Cohorts - Letter to the IACFS/ME

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

  1. anne_likes_red

    anne_likes_red Senior Member

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    Good on ya Shane. :Retro smile:

    Good work!
     
  2. fresh_eyes

    fresh_eyes happy to be here

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    OMG, Shane! Friedberg wrote back already! :D That's so awesome! Good on ya indeed.
     
  3. shrewsbury

    shrewsbury member

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    I second how fantastic it is that not only did Dr Friedberg respond so quickly, but he had already distributed Shane's letter to the rest of the board. :victory:

    Good on the IACFSME:Sign Good Job:

    Now let's see if the CAA gets on board and acts in conjunction with the IACFSME to inform every XMRV researcher of the need for precise definitions of the ME/CFS cohorts.
     
  4. jspotila

    jspotila Senior Member

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    We ARE on board and have been talking to anyone we can about the cohort definition question! And I think the Association would gladly partner with IACFS/ME or other groups working towards the same goal on this issue.
     
  5. Hysterical Woman

    Hysterical Woman Senior Member

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    I am searching for some huge bright big flashing star to hang over Shane and Dr. Friedberg!!!!

    Wow - thank you so much!!
     
  6. shrewsbury

    shrewsbury member

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    THat's great news Jennie! So good to hear that you're talking to people. And that you're willing to partner with the IACFSME and other groups. And while slightly off-topic, I'll repeat my thanks that Dr Vernon responded so quickly and clearly to the UK study.

    Are you thinking of posting an open letter or position paper or something to that affect on the website regarding the need for clear cohort descriptions and guidelines as to what they should be, and having some sort of mail-out to all researchers?
     
  7. CBS

    CBS Senior Member

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    Research and cohort guidelines - IACFS/ME, CAA and other advocacy groups

    Hi IF,

    Jennie asked me a few days a ago where I thought the IACFS/ME might publish a set of research and cohort guidelines. I haven't mentioned this to the IACFS/ME (quite honestly, I thought they'd cross that bridge if they came to it) but one appropriate venue may be a position paper in a journal (the IACFS/ME would know which journal would be most appropriate). I would assume that doing so could be done relatively quickly, ideally within a few months (as for embargoes, etc. I don't know what a journal might require of a position paper). Let's hope that we'll have some more info soon. We all know how busy these folks are right now (and its reassuring to know that they are busy on our behalf).

    Lastly, I'd like to thank Jennie for our talks (PMs) about this over the last few days. It would be great if this turned out to be an opportunity for the IACFS/ME and the CAA (and all other like minded groups in the US and abroad) to step up together in order to make a very strong and united stand.

    Shane
     
  8. shrewsbury

    shrewsbury member

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    That's all very good to hear Shane - thanks for letting us know.

    Jennie, IMHO, has done magnificently at up-dating the CAA, and making me feel it is relevant and being an advocacy leader.

    Obviously, I'm not a scientist. Publishing in a journal sounds wonderful. But I am concerned about the time lag. Research is going on now. In my opinion, a clear position needs to be made globally now. In ways that reach every researcher involved in XMRV and the public.
     
  9. CBS

    CBS Senior Member

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    IF,

    I agree, I would have liked like this out the day before yesterday (that really would have been nice). I am not familiar with how this will/should be handled to get it out (and get it right) ASAP. I really don't know how interested a journal would be if it has already been proposed as a standard by a group such as the IACFS/ME.

    Shane
     
  10. shrewsbury

    shrewsbury member

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    How about PLoS ONE? Anyone got $1350 and a business partner to recommend as the peer-reviewer? It could be out in 72 hours. :Retro wink:(Arghhh - that black humour of mine :Retro redface: - couldn't resist)

    Shane - You have done a masterful job of representing our interests to the IACFSME and the CAA, and so far their response time has been impressive. I will leave it in the hands of the professionals, trusting they know the effective way of doing this. And look forward to their responses to you.
     
  11. CBS

    CBS Senior Member

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    Now that was FUNNY! You just ended my day on the perfect note.
     
  12. anne

    anne Guest

    I'm close personal friends with a gibbon. Will that do?
     
  13. CBS

    CBS Senior Member

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    Response from Dr. Friedberg and the IACFS/ME on Cohorts

    I received a very thorough and much quicker response than I had expected. With Dr. Friedberg's permission (and my sincere appreciation of his efforts and the IACFS/ME board's consideration) here is his response to my original letter:

    And my response:

    So, any thoughts, suggestions, recommendations, etc.?

    The IACFS/ME clearly feels that the Canadian criteria is amongst (if not the) the most useful diagnostic criteria (...may better capture CFS than other definitions.) and it is good news to hear that efforts are now underway to operationalize it for research purposes.

    Shane
     
  14. Cort

    Cort Phoenix Rising Founder

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    Its a great idea; the IACFS/ME should establish suggested guidelines for researchers to use to look at the possible cohorts present. The problem is that they move VERY slowly, if at all.

    Really if you want to get something like this done - and I can't imagine Suzanne Vernon isn't thinking along these lines - talk to the CAA. They're starting the International Research Network which will have, among other things, established guidelines for sampling and testing. She is pushing them forward very quickly. . This is exactly what our research organization SHOULD be doing but the IACFS/ME has no money. At this point it really exists to put on the Conferences. Hopefully Dr. Friedberg will move them forward but they're almost all volunteer.

    One problem is that most studies are so small - because of meager funding - that it would probably be statistically impossible to differentiate between the different cohorts. A larger study could, however, do this and it could be VERY illuminating to see how patients stack up. If study's differentiate between cohorts on anything its mood disorders - but why not infectious onset, etc? Its been done a few times; it showed a few differences at times and didn't other times.
     
  15. jspotila

    jspotila Senior Member

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    Suzanne already has the proposal from Shane. Bear with us (the Association) until another project reaches the stage where it can be publicly disclosed. I know that sounds cryptic, but as with all research-related projects, information can only be released after a certain point in the timeline. I will provide more info when I can.
     
  16. shrewsbury

    shrewsbury member

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    Thanks so for letting us know that Dr Vernon has CBS' proposal. And that you are working on this aspect.

    You're right. It sounds cryptic. And it sounds like you think it's leading to good news. I sure hope so.

    And I hope the end result will be that all future me/cfs research uses the same, good definition - such as making the Canadian a research definition or the Empirical developed by the IACFS/ME. And also does so for any research referred to in their work.

    if:Retro smile:
     
  17. the cdc criterea have been shown to give about 66% false positives I think we need to repeat this fact incessantly
     
  18. shrewsbury

    shrewsbury member

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    Hi gerwyn - don't think I've officially said welcome - so welcome! Have been enjoying your posts and perspectives.

    I think this is a great stat that we should all know by heart and, as you say, repeat incessantly. I think we need the supporting research for it as well. Would you be able to post it along with its link?

    if:)
     
  19. CBS

    CBS Senior Member

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    CDC criteria - 38% actually have Major Depression

    Hi, I know I'm supposed to be resting. Just had to drop a quick note on this. I haven't heard the 66% figure before but I am aware of the following:

    Estimates are that using the CDC Empirical criteria leads to a patient population with as many as 38% of the patients suffering from Major Depressive Disorder, not CFS. Jason, Leonard A; et al. (2009). "Evaluating the Centers for Disease Control's Empirical Chronic Fatigue Syndrome Case Definition". Journal of Disability Policy Studies 20: 93100.

    The reference with the 38% Major Depression seems pretty solid (and often repeated - Jason runs the Center for Community Research at DePaul - http://las.depaul.edu/ccr/About/index.asp - they do a ton of good work on CFS).

    This it for the next several days - feeling a bit better but still have a ways to go (feels tenuous). And thanks to all those that left the wonderfully supportive messages in the community lounge (yep, I peaked).

    :Retro smile:
     
  20. Advocate

    Advocate Senior Member

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    So, Shane, would it be fair to say, based on Jason's work, that the CDC Empirical criteria give a 62% false positive rate? (Sorry for bothering you Shane, when you should be resting.)

    Gerwyn, were you thinking of Jason or something else when you mentioned 66% false positives?
     

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