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    CDC extends search for Chronic Fatigue Syndrome chief

     

    By KATE BENSON

    The Centers for Disease Control and Prevention — under a spotlight again for conflicting research on chronic fatigue syndrome — have extended the search  for a scientist to lead research into the disorder.

    Applicants to run the CDC’s Chronic Viral Diseases Branch now have until Friday, Sept. 17, to submit their resumes — a two-week extension. The Atlanta-based agency is looking for someone to take over a wing that, critics say, has resisted and ridiculed outside research suggesting a correlation between chronic fatigue syndrome and the XMRV retrovirus.

    Dr. William C. Reeves, who ran that branch since the early 1990s, was reassigned in February as both researchers and patient groups pressed for new, dynamic leadership. However, Reeves remained controversial as he continued to publish psychosocial studies regarding CFS and chose the samples to be used in the CDC’s latest study of the disorder. That study, which found no link with XMRV, was pulled and then published in July.

    FDA and NIH researchers found a prevalence of XMRV in CFS patients in a study that was also pulled and then published in August.

    Former CDC virologist Suzanne Vernon, now scientific director for the CFIDS Association, has said the CDC study was designed not to detect XMRV and charged that such studies continue to absorb time, waste precious resources and fuel controversy.

    A change in leadership at CDC might change that.  Psychologist Dr. Fred Friedberg, president of  a 500-member professional association of CFS experts, believes a new chief will need long experience in virology, immunology, and/or molecular medicine as well as strong managerial skills.

    But Friedberg, in an e-mail, stressed that the CDC program is most lacking in its ability to deal effectively with the scientific community, national and international medical and health-related organizations, community and non-governmental groups and the public at large.

    “To date, the leadership of the Viral Diseases Branch has conveyed an attitude of rebuff and dismissal toward the scientific and professional communities. This attitude has generated ongoing mistrust and skepticism of their plans for CFS research. …

    “The IACFS/ME would like to see the position of Chief filled by someone who constructively engages with the scientific community with a shared vision of substantive biomedical research — particularly in the challenging new domains of retrovirology and molecular medicine — with the potential of developing new models of intervention in this poorly understood illness.”

    A leader with open communication and fresh perspectives could restore the respect and credibility for the CDC, Friedberg said.

    Virologist Dr. Elizabeth Unger is the CDC’s current acting branch chief.

     

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    12 Responses to “CDC extends search for Chronic Fatigue Syndrome chief”

    1. Donna Cunningham says:

      Please follow up with the pursuit of this new Chief! Renewed Respect for the CDC is in order! Thank You.

    2. Kati D says:

      Thank you for covering this important topic. It is critical for ME/CFS patients that the right leader is picked to put a stop to stupid studies that go nowhere.

      Please continue reporting.

    3. Anne Keith says:

      Hopefully, the CDC will use the opportunity of finding a new Chronic Fatigue Syndrome chief to restore its credibility with the CFS expert and patient communities. It can do that by selecting someone who will look at all the science objectively.
      The CDC lost its credibility by decades of poor research that refused to seriously consider physical findings in CFS patients. Despite good research showing physical differences in well-defined patients, the CDC research — often authored by the director — focused on questionable psychological “explanations.” The foolishness of the CDC’s research bias was clearly shown by last fall’s publication in the prestigious journal “Science” of privately funded research that found a retroviral link to CFS.
      For the sake of the 1 to 4 million US sufferers (many of whom are fully disabled, at an estimated cost of $10 billion per year), please follow up on this story. It is critical that the CDC starts to do quality research to reduce and prevent the immense suffering this disease often causes.

    4. Bob Miller says:

      Kate,
      Thank you for following this Critical story. It has taken Decades to move us M.E./CFS patients out the Straus/Reeves Strangle-Hold and back into “Real Research” we truly need the Light Shining on this story and the upcoming Selection.Let us hope for a New Beginning at the CDC in M.E./CFS

    5. Jim Hall says:

      Thanks Kate, and I too hope you stay on top of this for all of us suffering (myself 261/2 yrs). The CDC could start making up for their past transgressions by getting this appointment right!

    6. sharon says:

      They need to extend this deadline again for another month or more. It is now the 16th of Sept and I really have to wonder if they have enough decent applicants for this role.

      I did my job and spread the OPM job description all over the Internet and into the Medical pubs, etc. just to help the CDC get some really GOOD outside blood. We do NOT need another CDC-insider with CDC/CFS anti-bias. I hope they know WE are all watching very closely to see who they put in as that tells us very clearly what they think of us, the new retrovirus they didn’t find – but the Big guys did find, and the path they plan on taking into the future. Frieden better be watching this one to make sure the CDC doesn’t take YET ANOTHER massive credibility hit. Too many hits against the CDC including the H1N1 hyped game. ((Don’t even start me on Swine Flu and the CDC…)))

      Thanks for great reporting!! Keep it up!!! Sharon.

    7. Ginette L. says:

      I applaud you for reporting on the CDC regarding it’s attitude towards CFS. I would also like to point out that FDA and NIH researchers did not find any XMRV in CFS patients but found other viruses of the same family : murine leukemia viruses.

    8. Benjamin says:

      Thank you for reporting this! The situation has been deteriorating for years. We all need to keep the CDC’s feet to the fire to make sure they do the right thing this time. Personally, I think the CDC should give back all the money they have wasted on research that was done just for political reasons or to mollify the longterm disability insurance companies, the psychiatric lobby, etc.

      I noticed a sea-change after videos of the CFSAC meetings went on the internet (another case where a major government agency was flaunting the law, in this case defying disability access laws, they complied only after the patient advocacy group M.A.M.E. forced them to put their meetings online). My sense is that when (literally) thousands of PWC’s around the world saw and heard first hand some of the stuff going on, the pressure began to mount. Wasn’t that part of what precipitated Reeves’ departure? (Maybe others can fill me in here).

    9. Michele Krisko says:

      Thank you for this encouraging report.

      As a sufferer of CFS for 18 yrs now I need relief and help to get my life back

      Though the past record of the CDC was murderously irresponsible I do feel a renewed hope that things will now be taken seriously.

      With the entire world watching along with the patient community connected like a strong web via the internet, the past would be hard even for the CDC to repeat.

      I am only sorry for those who we have lost literally as well as the untold number of years patients have laid in suffering losing most everything they worked for while this entity perpetuated the horrible myth that CFS was no a serious physical disease!

    10. michael says:

      The CDC has not lost its credibility regarding ME/CFS. It never had any. From 1983, when Peterson and Cheney asked the CDC to investigate an outbreak of this mystery flu from which patients did not recover, the CDC has been a disaster.

      The goal, now, is to create and build credibility from scratch.

    11. Teri says:

      Thank you for reporting on this mess that has gone on for decades. I would love to trust any area of our government again and hope the CDC will hire someone who has ME/CFS patients as the 1st priority.

    12. Judy Kelly says:

      I have just found out I have CFS a few months ago and I am already so tired of sleeping and laying around I can’t stand it. Someone told me to take Magnizime vitamins and it would help. Does anyone know if this is true. If not I just spent money on some,hoping it would help. How does CFS get started in the first place.

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