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    CDC insider to run research on chronic fatigue syndrome

     

    By KATE BENSON

    Dr. Elizabeth Unger has been named to run the Atlanta-based Centers for Disease Control and Prevention’s branch researching chronic fatigue syndrome, a move greeted with skepticism by CFS advocacy groups.

    Unger, acting chief of the CDC’s Chronic Viral Diseases Branch, replaces her longtime boss, Dr. William C. Reeves, who was reassigned in February. Reeves’ insistence on seeking a psychological explanation for CFS had enraged patient and medical groups that believe the cause is biological.

    Reeves’ approach proved embarrassing a year ago when researchers in Nevada reported finding a strong correlation between chronic fatigue syndrome and XMRV, a retrovirus similar in some ways to the one that causes AIDS.

    The CDC played no role in that study, which has since been corroborated in part by researchers from the U.S. Food and Drug Administration and the National Institutes of Health. Other papers have not found XMRV in CFS patient samples, and papers published Monday in Retrovirology raise the possibility of mouse DNA contamination skewing the results of those that did.

    Unger has defended the CDC’s continuing use of the so-called 2005 Empiric definition of CFS, which critics dismiss as overly broad and — since only the CDC uses it — nearly useless. In testimony before an federal advisory panel in October, Dr. Unger hewed closely to the past, defending the CDC’s emphasis on psychosomatic and psychosocial research.

    “She focuses on this to the exclusion of identifying pathogens, which is where the excitement, challenge and promise is right now,” Dr. Fred Friedberg, psychologist and president of the International Association of CFS, said at the time. He accused the CDC’s research program of “arrogance.”

    Advocates have been pushing the CDC for years to fund outside research into a possible viral explanation for the debilitating disease, which afflicts as many as 1 million Americans — maybe more. Most of them are adult women.

    Extramural researchers worldwide continue to criticize the CDC’s beleaguered program. “If the new permanent chief continues with the 1) empiric definition; 2) an emphasis on behavioral studies; and 3) ignores input from external scientists and other professionals, then our opposition to the program will continue,” Friedberg said Monday.

    Dr. Suzanne Vernon, scientific director for the CFIDS Association and Dr. Unger’s former CDC colleague, believes the most important qualities for her to demonstrate would be “humble leadership, a comprehensive knowledge of the state of the science and medicine of CFS, practical experience with providing CFS care or conducting CFS research, a sense of urgency and practicality and the ability to honestly and skillfully face adversaries and controversy.”

    Vernon and the CFIDS Association, in a prepared statement, charged this month that the CDC is wasting taxpayers’ money by seeking a psychosomatic cause that few other medical professionals believe is there:

    “For the past three years, CDC’s CFS research program, housed in the Division of High Consequence Pathogens and Pathology, has sacrificed laboratory-based studies to conduct assessments of personality and early life stress. This shift has come under fire from advocacy organizations and the research community alike, including tough scrutiny by the Department of Health and Human Services CFS Advisory Committee that makes policy recommendations to the Secretary of Health and Human Services.”

    “As a taxpayer, I’m not that happy,” CFIDS Association CEO Kim McCleary said.

    Announcement of Unger’s promotion came a few days after a CDC representative voted against barring blood donations from patients who say they have been medically diagnosed with CFS.

    Last week, an FDA advisory committee recommended that CFS patients be barred from donating blood, amid concerns of possibly contaminating the blood supply if a retrovirus were linked to the disease. The vote was 9-4 with the committee debating how a deferral of donors with chronic fatigue syndrome should be implemented.

    Committee member Dr. William Bower , medical officer with the CDC Office of Blood, Organ and Other Tissue Safety, clarified his vote in an e-mail:

    “I agree that people with CFS should not give blood. I voted ‘no’ on the question posed to the committee because I believe that using educational materials to discourage people with CFS symptoms from giving blood would be more effective than adding a question about whether or not they have a medical diagnosis of CFS.”

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    14 Responses to “CDC insider to run research on chronic fatigue syndrome”

    1. Me/CFS since 2010 says:

      Thank you very much for writing an unbiased article you have no idea how much this means to ME/CFS patients not only in the US but around the world, please help us by keep writing about these new findings, there are patients that have suffered for decades and the most respected researchers and CFS doctors have always agreed that CFS it is in fact caused by some pathogen as it can be shown in many many abnormal tests that CFS patients have, never in history another pathogen had been shown to be the culprit of CFS but now with the findings of XMRV and having done studies that show that up to 95% of people with CFS have it, there’s no doubt in my mind and the mind of many many others that in fact XMRV is the culprit, as far as the contamination concerns, all these articles coming from the UK are completely biased none of them mention anything about the findings done but the WPI,FDA,NIH,Harvard, the University of Utah, Dr De Merlier whom has tested positives all over Europe. i.asasasinsane that

    2. Drue says:

      This is a horrible move by the CDC and surely to upset those who have followed the history of the CDC and CFS. I really believe they have done far more damage to our understanding of this complex illness than they have ever done good. Its really shameful! Reminds me of the days where women with multiple sclerosis where labeled as having “hysterical paralysis”. The CDC has been practicing in the dark ages for far to long in this field and this appointment just promotes a further waste of tax payer money.

    3. SC says:

      It should also be pointed out that in opposing the use of the empiric definition, Suzanne Vernon, Ph.D. of the CFIDS Association (formerly of the CDC) should know what she’s talking about, she was a co-author of the Empiric definition: http://www.ncbi.nlm.nih.gov/pubmed/16356178

      BMC Med. 2005 Dec 15;3:19.
      Chronic fatigue syndrome–a clinically empirical approach to its definition and study.

      Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L, Papanicolaou DA, Unger ER, Vernon SD, Heim C.

      Here is the Dr. Vernon’s statement distancing herself from the Empiric definition: http://www.cfids.org/cfidslink/2010/010607.asp#6r

      The IACFSME and nearly every patient advocacy organization recommend the use of the Canadian Consensus Diagnostic criteria and the Fukuda criteria.

    4. Phoebe Snowden says:

      Thanks very much for your coverage of this issue. As a CFS patient for almost 23 years I am dismayed that Unger and her CDC virologist colleagues are continuing to waste taxpayer money to investigate the “mind/body connection” in CFS, an infectious disease, while ignoring biomarkers common in the disease such as chronic herpes infections (particularly EBV/HHV-6/CMV), bacterial infections including mycoplasma pneumonia, and other biological abnormalities. The CDC has also partnered with the UK, whose policies characterize CFS as a mental illness and refuse to even evaluate patients for pathogens.

      If you could find out exactly what is going on here-why the CDC refuses to address the issue of pathogens in CFS, why they keep changing their definition to exclude all biomarkers (and as a result, the original cohort of sick people diagnosed with CFS), why they refuse to replicate the Science study that found XMRV in CFS: you would have yourself the answer to a 25 year-long scandal plus a Pulitzer. What is it that they trying so desperately to hide?

    5. v99 says:

      “humble leadership, a comprehensive knowledge of the state of the science and medicine of CFS, practical experience with providing CFS care or conducting CFS research, a sense of urgency and practicality and the ability to honestly and skillfully face adversaries and controversy.”

      Unger doesn’t meet this criteria at all.

    6. Samuel says:

      I particularly like your good understanding and journalistically accurate labeling on the subject of the cohort issue when you wrote “so-called 2005 Empiric definition”. You have no idea how important that so-called is. Suffering and death rides on it. You done good.

      I find the choice amusing between followup and e-mail and follow-up and email. 🙂

    7. Samuel says:

      Please be wary of quoting the CAA. They do not represent us.

    8. Tom K says:

      Thanks Kate. It’s great to see a piece like this.

      Fred Friedberg is right. The so-called empiric CFS definition (Reeves et al., 2005) must go.

      I set up a petition against this definition at http://bit.ly/i1BHgW i.e.
      http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/index.html
      (blog posts contain some extra information).
      The petition has over 2500 signatures, which is a lot for a topic which is in some ways not easy to understand.

    9. Lisa Baldwin says:

      This travesty of justice to our family occurred because we are ignorant to the ramifications that our lack of research and refussal to care for this ME/CFS patient community for decades has caused- even the children affected by this serious illness are being subjected to pure experimental medicine at the hands of people who should be jailed for committing such abusive trials and experiments on kids in the name of ” the best interests of the child” and . I am an American and it’s time that we act like people who know that actions like these above need justice and punishment in a society that claims to be free.

      Lisa Baldwin, BSW
      http://www.bringingryanhome.com

    10. Keith says:

      As a CFS patient of over 24 years whosw whole family caught an infection at once and never got better I can say that this is definately not a psychological disease. Before CFS I was winning state track and field medals. Then one day I could not walk a lap around a track and have been very ill since. Thank you for following this story.

    11. shelley says:

      thank you for your anger on our behalf – this is the only thing that stands between us and death – after 30 years of no action to preserve face, the cdc is not about to reverse this decision

      shelley carlson
      cfs sufferer 30 years

    12. Desdinova says:

      Those who run the CDC appointed Dr. Unger. They know full well her history, view of and beliefs about CFS/ME. And would not have appointed her to the position unless it was it was in line with their CFS/ME agenda or at the least severed theirs.

      The Removal of Dr. Reeves by those that run the CDC was a scapegoat action. Reeves blew the whistle on the CDC to at best save his own neck and at worst he did it at the direction of those above him. That way they could control the inevitable investigation and limited it to where the money went and not an in-depth investigation into the CFS program beyond basic financials.

      The American people and the world in general should at the very least be concerned with the CDC’s appointment of Dr. Unger. They should know that this is the same agency that went crying to the Department of Health and Human Services (DHHS) to stop the National Institutes of Health (NIH) and FDA from publishing their XMRV Study because it was rumored to contradict the CDC’s study.

      A Scientific Organization that intentionally or unintentionally skews, ignores, or impedes science as well as open and free scientific discourse is a concern. When it’s one of the most prominent, influential and important Health Agencies in the world it’s dangerously alarming.

    13. PeterW says:

      Dear Kate Benson,

      A thank you also from overseas (me in Aus). The theoretical constructs pursued by recent CDC research are so vague they are virtually unfalsifiable. Appears to be even worse in the UK where the government is funding complete quacks like the “positive thinking can heal you” Lightning Process crowd.

      What happened to the authentic scientific curiosity that took our civilization out of the dark ages?

      Fairness would indicate that Dr Unger be given the benefit of the doubt and a fresh start. She has an opportunity to set a new course. To consider the whole body of knowledge on CFS. Especially the many *clinical* studies.

      What will you do Dr Unger?

      Peter W
      Melbourne, Australia
      (Carer for a CFS sufferrer. Called “god” by his school friends because “he could do anything”. Until suddenly housebound since Jun 11, 2001 at the age of 13 from CFS)

    14. Justin Reilly, esq. says:

      Thank you for reporting on this very important issue. Dr. Unger has demonstrated in her acting director role that she is just another CDC “CFS” charlatan. The Reeves definition is pure garbage meant to muddy the science and conflate ME sufferers with tired people. CDC continues it’s shameless quarter-century war on ME science and patients…

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