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Reeves is out/What about the CDC/CFS website?

Discussion in 'Action Alerts and Advocacy' started by Frickly, Jan 29, 2010.

  1. Frickly

    Frickly Senior Member

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    I might be the last one to realize this but I am beyond irritated that the GET program is being promoted on the CDC's CFS website. It is in the tool kit for doctors!

    http://www.cdc.gov/cfs/toolkit.htm

    Also, the statement on the front page, " Equally important, about 40% of people in the general population who report symptoms of CFS have a serious, treatable, previously unrecognized medical or psychiatric condition (such as diabetes, thyroid disease, substance abuse)." has got to go. Another irritation is the link to the CDC's publication of "Linking sexual abuse and CFS". That has got to go.

    http://www.cdc.gov/cfs/

    What is the point of the CDC's awareness campaign if it just points people to this horrible website for information?

    Reeves it out...shouldn't they clean up the website that Reeves left behind?
     
  2. Kati

    Kati Patient in training

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    Frickly, I am sure that as soon as the replication studies come back there will be great changes happening in the concept of CFS. CDC has to keep up with the pack and the website will have to reflect that, otherwise they will be left behind
     
  3. Samuel

    Samuel Bedbound with NO DOCTOR

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    Never forget the darkness

    This reminds me to point out the importance of keeping track of the past (and present). There will be efforts to revise history.
     
  4. I would like to say that I suspend judgement about this change from Reeves to Unger, but I do not. Unger will have to prove herself to me. Til then, I remain skeptical. Perhaps this is how I protect myself, not trusting anyone. I do hope that one day, we can all trust the people who were supposed to help us, are supposed to help us. I pray that something good is happening here. But if it is, I have yet to know what it is....
     
  5. anne

    anne Guest

    with respect, bluebird, I don't think we need to give too much thought to Unger yet. She's, thus far, a temporary replacement. I do not blame you for being skeptical at all, but let's wait and see who they give the job to, and that will tell us....
     
  6. rebecca1995

    rebecca1995 Apple, anyone?

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    Well said, Samuel. I noticed on October 8 a lot of the newspaper stories were careful to emphasize what a SERIOUS disease it is. No one wants to be on the wrong side of history.

    That's why I keep a written record of all the appalling things people have said to me--so they can't deny it when the truth comes out.
     
  7. Anika

    Anika Senior Member

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    CFS within the CDC Organization - Some Background Information

    The CDC head who was appointed last year has been doing reorganizing - and it takes a while for all the changes to filter down. That is one reason there are a lot of "acting" appointments like Elizabeth Unger right now.

    I wanted to catch up on the current organizational status of the CFS research program within CDC. So, I am posting below a description of where CFS is, as well as copying what the Chronic Viral Disease Branch is assigned to do.

    This is long - but I wanted to include it for those people who might be interested in the organizational structure. I put this under the Advocacy thread because it may help us figure out who is in the power structure for future letter writing, etc.

    Anika

    CFS within the U.S. Centers for Disease Control (CDC) Organizational Structure.

    Within the CDC, there are several Offices. Some of the Offices have Centers within them. (You can see an organizational chart that shows the Offices and Centers here: http://www.cdc.gov/maso/pdf/CDC_Chart_wNames.pdf .)

    Each Center has multiple Divisions, which in turn have multiple Branches. CFS is assigned to the Chronic Viral Diseases Branch,
    --of the Division of Viral and Rickettsial Diseases,
    ----of the National Center for Emerging and Zoonotic Infectious Diseases (NCEZID),
    ------within the Office of Infectious Diseases.

    As of the January 29, 2010 announcement, Elizabeth Unger will become the new acting head of the Chronic Viral Diseases Branch, when William Reeves changes assignments on February 14. Reeves new assignment takes him outside the Office of Infectious Diseases, into the Office of Surveillance, Epidemiology, and Laboratory Services. On the organizational chart its a major move.

    Within the Center for EZID that CFS is under, the acting Center head is different too now partly because two former Centers were combined into the current Center in the recent reorganization. Before the reorganization, Lonnie King was the head of the former Center for Zoonotic, Vector-Borne, and Enteric Diseases (NCZVED). Now, Thomas Hearne, PhD, is acting head of the new, larger NCEZID. (I cant tell if or where Lonnie King is in the new organization.)


    http://www.cdc.gov/ncezid/about-ncezid.html takes you to the CDC web page for the new NCEZID, which has links to organizational charts and information about the Divisions.

    Going through some of those links, you can see the page on the Chronic Viral Disease Branch at http://www.cdc.gov/nczved/divisions/dvrd/cvdb/index.html . Here is what it currently says about the jobs of this branch:

    DVRD - Chronic Viral Disease Branch

    1. Conducts surveillance and hypothesis-driven clinical studies of chronic fatigue syndrome (CFS);
    2. develops novel genomic and proteomic laboratory assays to be used in studies of CFS;
    3. develops bioinformatics techniques to elucidate the pathophysiology of CFS and similar medically unexplained illnesses;
    4. develops, executes, and evaluates medical and public education programs to decrease morbidity associated with CFS;
    5. conducts laboratory-based epidemiologic studies of human papillomavirus (HPV) infection and cervical cancer to enable effective control and prevention;
    6. conducts research concerning human immune responses to HPV, CFS, and other related unexplained or chronic illnesses;
    7. develops, evaluates, and improves reagents/methods for rapid diagnosis of HPV, CFS, and other related unexplained or chronic illnesses;
    8. provides epidemiology, molecular biology, bioinformatics, diagnostic serology/virology, and immunology consultation and collaboration to national and international organizations concerning prevention and control of CFS, cervical cancer, and related chronic or medically unexplained illnesses; and
    9. provides expert assistance and consultation to national and international investigators and organizations regarding sequelae of viral infections.

    This CDC web page was last updated August 20, 2009. I dont know what it said before that.

    The recent and planned projects on CFS dont seem to me to be very well tied in to the assignments the branch is given on CFS..
     
  8. gracenote

    gracenote All shall be well . . .

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    Anika,

    This is really interesting. Thank you for posting this.
     
  9. valia

    valia Senior Member

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    You are so right, to do that, I have watched the MEAction for some time and they are masters of the HOKI KOKI - "you put one leg in you put one leg out etc.......
     
  10. valia

    valia Senior Member

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    Double post, sorry got carried away doing the HOKI KOKI!
     
  11. Abraxas

    Abraxas Senior Member

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    Thanks for your work on that Anika, it's very useful to be able to see where we fit in to the CDC's structure. Wonder when that page will be next updated?
     
  12. Frickly

    Frickly Senior Member

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    Thanks Anika!
     
  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Hi valia,

    I really hope you won't mind my mentioning the following - but if I don't, it could lead to confusion, especially to readers from outside the UK.

    If by "MEAction" you mean the registered UK patient organisation Action for M.E., this organisation has not operated under the name of "ME Action" for many years.

    Since 1999, there has been a Yahoo! Groups message board called "ME Action UK" which is owned by Stephen Ralph, who also maintains a personal website called "ME Action UK", neither of which is connected in any way with Action for M.E. and which isn't any form of organisation.

    There is also the registered UK patient organisation the ME Association which last year also registered the name the "ME Society".

    Perhaps you'd clarify which of these you meant?

    Suzy
     

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