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!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

news: maker of Ampligen gives grant to IACFSME to develop CFS clinical guidelines

Discussion in 'General ME/CFS News' started by fresh_eyes, Jan 21, 2010.

  1. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
  2. mezombie

    mezombie Senior Member

    Messages:
    324
    Likes:
    20
    East Coast city, USA
    Grant is for more general purposes

    From the article:

    Frankly, I don't see why the IACFS/ME can't just put their weight behind the Canadian Clinical Guidelines. Why reinvent the wheel?

    Otherwise, I'm all in favor of seeing some of the Ampligen profits go to the IACFS/ME.

    Let's hope other drug manufacturers follow this lead.
     
  3. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    I'm with you marie. The Canadian Clinical Guidelines are the world's gold standard. What we need is a research definition that will be used in every future study. Then there will be no more problems with studies of apples disguised as oranges.

    Thanks for posting this fresh eyes.
     
  4. CBS

    CBS Senior Member

    Messages:
    1,367
    Likes:
    271
    Western US
    IACFS/ME and the Canadian Definition

    In my recent e-mail exchange with Dr. Friedberg, you might recall that he did say there is an effort underway to adapt the Canadian Definition for research:
    I assumed that as president of the IACFS/ME he was talking about an effort within the IACFS/ME to do so.

    It was also my impression from comments on the forum by Jennie Spotila ('IACFS/ME cohorts' thread) and in an email exchanges with Dr. Bateman, that Dr. Vernon, Scientific Director of the CAA, agrees strongly with the need for a better research criteria, most likely based largely upon the Canadian criteria. Jennie also alluded to something that was in the works. Dr. Vernon is on the Board of the IACFS/ME.

    This is very good news.

    Shane
     
  5. CBS

    CBS Senior Member

    Messages:
    1,367
    Likes:
    271
    Western US
    Link to thread and letter to IACFS/ME on cohorts

    Here's the link to the cohort's thread: http://forums.aboutmecfs.org/showthread.php?2091-Cohorts-Letter-to-the-IACFS-ME. The actual letter is post #13. Dr. Friedberg's initial response is only a few posts later as he responded within 30 minutes. The full response by the board is post # 33. I will probably write him about the new funding and its impact on the time line within the next day or two.

    Thanks FE!

    I'm still getting my feet back underneath me but this was good news and a good reason to say that I'll be back in force soon.

    Shane

    PS. I'm having some problems with my user account (for some reason the forum won't let me edit my earlier post, nor can i view the day's new posts). I keep getting bumped off and then (magically?) logged back on. I probably won't consume a lot of energy trying to figure this out right now. I do hope everyone is well.
     
  6. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    We're all having the same issues with the forum right now Shane.

    FE, that's great news! We are finally getting the kind of support we need. A research definition that all doctors should adhere to would be great especially if it's based on the Canadian Definition of CFS.
     
  7. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    From the CAA's Facebook wall:

    This seems like really good news to me, too. If the clinical guidelines are going to get firmed up, these are the folks to do it. (Also it seems this means Ampligen is not DOA as some thought, huh??)
     
  8. Denn

    Denn Guest

    Great news! I really think this route is going to be more productive in the short term...
    Thanks to all for the posts.

    Denn
     
  9. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Glad to give you some good news, Shane. This totally fits with your mission re the cohorts, doesn't it? Now back to resting, you! :sofa:
     
  10. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Yes - hopefully this is what it will amount to, making the Canadian guidelines more user-friendly.
     

See more popular forum discussions.

Share This Page