Controversy Surrounds Link Between CFS and HIV
Chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), myalgic encephalomyelitis (ME) and by other names, is a complex and debilitating chronic illness that affects the brain and multiple body systems. CFS affects about one million Americans, which is more than Multiple sclerosis (MS), AIDS or lung cancer.
Just less than a year ago the journal Science published a study linking CFS to a retrovirus in the same family as the AIDS virus. Skepticism remained high among medical experts however, as four other studies could not confirm the linkage at that time.
Researchers, from the National Institutes of Health (NIH), the Food and Drug Administration (FDA) and Harvard Medical School (HMS), are now reporting a link between CFS and the same family of virus previously reported, a category known as MRV-related viruses.
Results, based on the evaluation of 37 CFS patients, revealed gene sequences from several MRV-related viruses in 33 patient’s blood cells; while only 3 out of 44 healthy patients were found to have MRV-related viruses. Findings of the study have been published by The Proceedings of the National Academy of Sciences.
Experts say the new study represents a significant advance by confirming the presence of a cluster of genetically similar viruses.
“I think it settles the issue of whether the initial report was real or not,” said K. Kimberly McCleary, President, Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, the leading organization for people with chronic fatigue syndrome.
Agreeing, Leonard A. Jason, Professor of Psychology, DePaul University and a leading researcher on the syndrome said, “This class of retroviruses is probably going to be an important piece of the puzzle.”
Sufferers of CFS have been anxiously awaiting the results and publication of the second study having previously feared that important scientific data might be lost or suppressed due to the controversy that has surrounded the differing research results.
Despite evidence that CFS is often sparked by an acute viral illness, CFS patients have become accustomed to their doctors, family, employers and friends thinking they are hypochondriacs and dismissing their condition as psychosomatic or related to stress or trauma.
Historian Mary Schweitzer, who has written and spoken about having the illness said, “We’re really hoping this will blow the lid off. Patients are hopeful that now the disease itself might be treated seriously, that they’ll be treated seriously, and that there might be some solution.”
Senior author of the new paper, Dr. Harvey J. Alter, Infectious-disease Expert NIH, being fully aware of the intense interest in his findings, said, “I was sympathetic to the desire of people to know, and it was difficult because we didn’t feel we could communicate with the patient community directly until the paper was published.”
HIV and other retroviruses store their genetic code as RNA, convert it to DNA and integrate themselves into the host cell’s genome to replicate. At least three antiretroviral drugs used against HIV have been shown in laboratory studies to inhibit XMRV, which has also been associated with prostate cancer.
Dr. Jamie Deckoff-Jones, Physician, Santa Fe, NM and a CFS patient, has been taking antiretrovirals prescribed by her doctor. She shares her journey and that of her daughter, both of whom are XMRV positive by culture and using specific antiretroviral treatment, on her blog: www.treatingxmrv.blogspot.com
The controversy is sure to continue for quite some time regarding the question of why only two research teams found evidence of retroviruses and how the testing and analysis methods differed, as well as how CFS participants were chosen.
“The possibility that these agents might be blood-transmitted and pathogenic in blood recipients warrants extensive research investigations,” Dr. Alter and his co-authors wrote in the new study.