Friday, January 21, 2011

Open Letter to Dr. Elizabeth Unger, new Chief of Chronic Viral Diseases Branch

January 21, 2011

Dr. Elizabeth Unger
Chief of Chronic Viral Diseases Branch
National Center for Emerging and Zoonotic Infectious Diseases
Division of High Consequence Pathogens and Pathology
Centers for Disease Control and Prevention

Dear Dr. Unger,

Congratulations on your appointment to your new position. I wish you great success. Your future performance in this position will have a huge effect on my future and the futures of millions of Americans and others around the planet.

The only way I could see your future performance as a success would be if you will take the Chronic and Viral Diseases Branch of the National Centers for Emerging and Zoonotic Infectious Diseases in the direction of research into the viral cause(s) of the infectious neuroimmune disease called myalgic encephalomyelitis by the World Health Organization and trivialized by the CDC by calling it “chronic fatigue syndrome” for the last 20 years.

The NIH symbolically extended its middle finger into the faces of “CFS” patients when it moved “CFS” research to the Office of Women's Health, which has no labs, no recognition and no power to do anything positive about this disease. After 8 years of making recommendations to the Secretary of Health, virtually none of those recommendations have been acted upon and for many years, those suggestions have not even been acknowledged. This disease disables children, men and women.

You have it in your power to change the direction of “CFS” research, away from the marketing and public relations attempt to morph it into a form of mental illness – a direction it should never have been forced into by your predecessors. You can get this research, and the taxpayers' investment, back on target, or you can continue the bad faith pseudo-research of those who preceded you. This pseudo-research has benefited only the disability insurance industry - because it enables them to deny disability payments to patients - and the psychiatrists who have captured the field in lieu of any biomedical treatments being sanctioned by CDC.

From the time of the 1984 epidemic outbreak of this disease in Incline Village NV, where the attending physicians had brain scans showing punctate lesions similar to patients with that other infamous, retrovirally caused disease – HIV/AIDS - through the ensuing 27 years, researchers have continued to pile up the evidence that this is a disease caused by one or more viruses. Hundreds of physicians and their patients have noticed for decades that this illness has many of the same symptoms and signs of other viral diseases, such as influenza, chronic Epstein-Barr, and HIV/AIDS.

Yet the CDC called it “mass hysteria” in the 1980's. That was nonsense then and it's still nonsense.

Dr. Harvey Alter of NIH has said recently, if “CFS” is not caused by the retrovirus XMRV and/or related MLVs, it is still obviously a serious biomedical disease with a viral cause and we need to do the research to find out which virus(es) are responsible.

You, Dr. Unger, have the chance to stand on the shoulders of giants like Drs. Alter, Lo and Komaroff, or to sink back into the 19th Century's misogyny and misdiagnosis that views this disease as a mental illness. I fervently hope you will do right by American taxpayers, persons who have ME/CFS and those who care about them.

Lilly Cooper – American citizen with ME/”CFS” for 29 years

******************************************************************************************** (Elizabeth Unger) (Beth Bell) (Tom Frieden)


  1. Wish I could add my signature, Debbie 27 years
    Thank you Lilly. Wonderful letter.

  2. She could make such a difference. And history would remember her contribution.

  3. You are certainly welcome to copy, paste and send it to her, too, with your own signature.

    And "copy" to some of her superiors: (Frieden)

  4. I love the substance of your letter!

    That said, please note that the CDC and NIH are totally separate entities.

    It was then-NIH Director Varmus who moved ME/CFS research out of NIAID and to the to the Office of Research on Women's Health (ORWH) in 1999.

    Given that neither CDC has any authority over NIH, nor NIH over CDC, you might want to delete the recommended copies to Mangan, Collins and Fauci.

    Unger's bosses at CDC are Steve Monroe, Beth Bell, and Thomas Frieden.

  5. @ Anon: "It was then-NIH Director Varmus who moved ME/CFS research out of NIAID and to the to the Office of Research on Women's Health (ORWH) in 1999."

    All the more reason to send one's opinions of the CDC to NIH, if one is so inclined. I used the word "superiors" tongue in cheek, although Kathleen Sibelius might be considered "superior" to all of them.

    I am aware that the NIH and CDC are separate entities. I'd like the left hand to know what the right hand is doing, speaking of government health-related bureaucracies.

    I'd love it if you provided the email addresses of Monroe and Bell. Frieden's is listed above.

  6. Nice letter Oerganix! Though it is true that the NIH, not the CDC, moved CFS research oversight to the ORWH.

    I agree with you, however, that cc'ing different govmt players is a good idea.

  7. I have been ill with HIV-like symptoms since 1989. I have trotted to countless docs to be told what I have is psychological even though I have unusual labs years after onset. I have not been diagnosed with CFS/ME but rather Fibromyalgia 19 years after getting sick. I have very recently tested positive for XMRV using VIP Dx's PCR & Serology & share the CFS/ME symptom list. I don't think these are two separate conditions.

    I contacted the CDC since I live in the area to volunteer my blood for their research & have had no reply aside the canned message that they shall forward my email to the correct department. I might try a little harder after reading this article.

    I Googled, "XMRV, the city I live, research," & lucked out to find someone in my area. I contacted this researcher affiliated with the VA Hospital & local University in my area, who had published many papers on HIV & one on XMRV research. He promptly contacted me, & I'm very excited about his openess & interest in using my blood samples as part of his research, which is to identify antiviral therapies.

    I think egos may be too large to work together to find a solution to this health concern, & it will take men & women of lesser egos for the left hand to be able to speak to the right. It's up to those of us who suffer to no longer do it in silence health permitting. I have been writing Senators, Congressmen, Congresswomen, & local news to spreads the word.

    Even though not one of my physicians has even heard of XMRV & all but one thinks I'm making myself sick with "stress", I am still going to fight. I truly didn't want the new human retrovirus, but it has been the 1st thing that has ever made sense to me in 22 years since contracting the worst flu EVER that never went away. My husband has it, my son is Autistic & potentially has it, & my daughter shows signs of illness too with the mouth & lip sores & waning stamina, which breaks my heart. I was told by my docs I was crazy, not contagious, & healthy to have children. I haven't donated blood in 10 years, but what about the other 12 in which I did????

  8. Excellent letter - and I will follow your suggestion to send it along with my signature. Thank you.

  9. @Anon - What an excellent idea! To google XMRV, your city, and research!

    I hope you, and the millions who have lost their lives without quite dying, will soon have more than just hope.

    And thanks to you others who have left comments.

  10. @DY and Anon, I have corrected the "who moved cfs to women's health" error. It occurs to me that might have been done in response to the corruption the Congressional investigation had found at CDC the year or two before. The theft of research money and the lying to Congress every year, saying they were doing research on "cfs" when they weren't. Hillary Johnson's book, Osler's Web, has the full story, of how they mocked the illness and the patients who had written to CDC for help. It was then that CDC switched from stealing the money to spending it promoting the myth of mental illness as cause.

  11. Hi again,

    Here are the email addresses of Beth Unger's bosses: (Beth Bell) (Tom Frieden)

  12. Thanks again, anon. The one to Steve Monroe doesn't work, but apparently Bell's and Frieden's haven't provoked any response yet. (Monroe's simply said the "receiver" didn't recognize that email address.)

    I immediately got the robot response (out of the office) for the one I sent to Dennis Mangan.

    We'll see if I hear anything more than the usual mumbo-jumbo from any of the others, including Dr. Unger.

  13. Excellent letter. Thanks for writing and posting. Can't hurt to remind Unger of NIH's malfeasance and nonfeasance and cc Fauci and other NIH people. I sent a copy myself.