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.

IASCFS/ME - Science and the Hold on XMRV Studies

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by V99, Jul 30, 2010.

  1. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    http://www.iacfsme.org/
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Glad to hear from IACFS/ME folks.

    Tina
  3. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Umm. . . no offense but isn't this kinda of a like um. . . well "duh" moment? Why do these guys always seem two steps behind? Is it because they are international? Maybe more cautious?
  4. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    So where is the CFIDS Association on this?
  5. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    ROFLMAO, Working with the gov'ment?
  6. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Are they helping the CDC perfect that test that finds XMRV in fake samples?
  7. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    531
    From what I know, the CAA's overall press release page for XMRV is hard to follow -- they don't highlight updates well and myself and a few other people had to read it a few times to see where info had been change. But I have heard that Kim McCleary talked to several officials in DC about the "hold" -- I don't know details though and someone else should confirm this.

    The IACFS/ME is a small group with little support and their members are all very busy which might account for the slower press release. That being said, they should disseminate this as widely as possible now - I hope they have a media person working with them.
  8. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Is this deliberate? And why say the paper will be released within weeks, and then add, 3 weeks later, that it will be out later this summer?

    Also, why have your upcoming webinar's at the bottom. They may link in, but you are trying to communicate to CFS patients, or are they?
  9. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    53
    There is a post on the CAA's facebook page (that you have to click the CAA + Others button to see) with the link to the IACFSME position which also asks if the CAA has made a formal position statement.

    There has been no reply as yet.
  10. jspotila

    jspotila Senior Member

    Messages:
    1,066
    Likes:
    573
    On July 2nd, the Association said in the CFIDS Link:

    I didn't go back and check, but I'm pretty sure the Association's Facebook page included a similar statement about our support for immediate publication of both studies, and that we were advocating for that to happen.

    On a personal note: I am more than happy to answer questions and consider constructive criticism of the Association's work. But I really would appreciate common courtesy instead of comments like "ROFLMAO, Working with the gov'ment? " or "Are they helping the CDC perfect that test that finds XMRV in fake samples?"
  11. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Will the CFIDS Association be posting the statement from the IACFS/ME?
  12. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Why is the XMRV page so hard to follow? and will they be fixing this problem?
  13. jspotila

    jspotila Senior Member

    Messages:
    1,066
    Likes:
    573
    The statement was added to the Association's XMRV page a few minutes ago. It's a link in the "Additional Information" list.
  14. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    The CFIDS Association has currently has the following on their facebook page:
    Why do they not state which definition this is referring to?
  15. jspotila

    jspotila Senior Member

    Messages:
    1,066
    Likes:
    573
    The post you reference is from Wednesday, July 28th. The Association posted the link to Dr. Jason's paper on July 20th. The Association's position on the Canadian definition can be read here: http://cfids.org/cfidslink/2010/010607.asp#4r
  16. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Most people will not notice that a new link has been added. Especially when the links provided are not organised. It is not mentioned in the body of the text, and no posting has been made on the Facebook page. This does need correcting.
  17. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Why do you not state on the Facebook page that it is the Canadian criteria?
  18. jspotila

    jspotila Senior Member

    Messages:
    1,066
    Likes:
    573
    There were a lot of changes today, and I know that it can be challenging to track them all. The links under "Additional Information" are listed by date of posting. The notice on the FB page that the IACFS/ME statement was posted to the XMRV info page is in the comments on the post about today's update.
  19. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Heard and noted

    Hey JSpot

    No personal offense meant. I should have been more precise and less cavalier. Please accept my apology's and if you would like I'll delete the post.

    That said, I do have a direct problem with the current CAA's handling of the hold's on the Alter Paper. My problem is that I hold the CAA to a very high standard and I feel that the standard has not been met by the CAA or any other CFS patient organization. My problem does belong to me and is not directed at any member of the CAA or other patient organization. However, I do feel comfortable enough in this setting to express my expectation and disappointments in the current patient advocacy groups.
    • I expect that a premier patient advocacy organization not engage in rumor's such as 'sources indicate that the paper will be released in a few weeks'.
    • I expect a premier patient advocacy organization like the CFIDS organization to present factual information if they have it and to keep quiet if they don't.
    • I expect a premier patient advocacy organization like the CAA to make strong statements against government interference in science that directly affects the health and well being of the patients they are representing.
    • I expect a premier patient advocacy organization like the CAA to make a strong stand and to organized patient based campaigns in letter writing and protesting any action that directly affect the health and well being of the patients they are representing in a negative manner.

    I feel that the above criteria has not been met by the CAA and would like to express my disappointment with the CAA current handling of the situation.

    Course other folks might find my disappointment to be based on faulty perceptions. That's totally cool. Folks is folks.

    Now how do you remove snake eggs from behind a refrigerator without damaging the dang things. . .
  20. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Yes, it does appear that it is challenging for the CFIDS Association to communicate with the world. The links under 'Additional Information' are not all listed by date of posting. Otherwise the IACFS/ME statement would appear below the advert for the webinar and the Future medicine article, and the 'Science study', would be much further back. Anyway, a link is not good enough, when the statement comes from the IACFS/ME.
    The CFIDS Association should not be relying on members to add important information as a comment. The IACFS/ME should have its own section.

See more popular forum discussions.

Share This Page