CFS article update, NY Times

Discussion in 'Fibromyalgia Main Forum' started by ephemera, May 30, 2008.

  1. ephemera

    ephemera New Member

    FYI, today's NY Times has an update (Updated from an article that originally appeared in The New York Times on July 17, 2007).

    Related Topics, Immune Response
    Times Essentials

    Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’

    Donna Flowers was once debilitated by chronic fatigue but has tamed her disease with exercise and treatment.

    For decades, people suffering from chronic fatigue syndrome have struggled to convince doctors, employers, friends and even family members that they were not imagining their debilitating symptoms. Skeptics called the illness “yuppie flu” and “shirker syndrome.”

    But the syndrome is now finally gaining some official respect. The Centers for Disease Control and Prevention, which in 1999 acknowledged that it had diverted millions of dollars allocated by Congress for chronic fatigue syndrome research to other programs, has released studies that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes.

    The agency has also sponsored a $6 million public awareness campaign about the illness. And last year, it released survey data suggesting that the prevalence of the syndrome is far higher than previously thought, although these findings have stirred controversy among patients and scientists.

    Some scientists and many patients remain highly critical of the C.D.C.’s record on chronic fatigue syndrome. But nearly everyone now agrees that the syndrome is real.

    “People with C.F.S. are as sick and as functionally impaired as someone with AIDS, with breast cancer, with chronic obstructive pulmonary disease,” said Dr. William Reeves, the lead expert on the illness at the disease control agency, who helped expose its misuse of chronic fatigue financing.

    Chronic fatigue syndrome was first identified as a distinct entity in the 1980s. (A virtually identical illness had been identified in Britain three decades earlier and called myalgic encephalomyelitis.) The illness, which afflicts more women than men, causes overwhelming fatigue, sleep disorders and other severe symptoms. No consistent biomarkers have been identified and no treatments have been approved for addressing the underlying causes, although some medications provide symptomatic relief.

    Patients say the word “fatigue” does not begin to describe their condition. Donna Flowers of Los Gatos, Calif., a physical therapist and former professional figure skater, said the profound exhaustion was unlike anything she had ever experienced.

    “I slept for 12 to 14 hours a day but still felt sleep-deprived,” said Ms. Flowers, 51, who fell ill several years ago after a bout of mononucleosis. “I had what we call ‘brain fog.’ I couldn’t think straight, and I could barely read. I couldn’t get the energy to go out of the door. I thought I was doomed. I wanted to die.”

    Studies have shown that people with the syndrome experience abnormalities in the central and autonomic nervous systems, the immune system, cognitive functions, the stress response pathways and other major biological functions. Researchers believe the illness will ultimately prove to have multiple causes, including genetic predisposition and exposure to microbial agents, toxins and other physical and emotional traumas. Studies have linked the onset of chronic fatigue syndrome with an acute bout of Lyme disease, Q fever, Ross River virus, parvovirus, mononucleosis and other infectious diseases.

    “It’s unlikely that this big cluster of people who fit the symptoms all have the same triggers,” said Kimberly McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, the advocacy group in charge of the C.D.C.-sponsored awareness campaign. “You’re looking not just at apples and oranges but pineapples, hot dogs and skateboards, too.”

    Under the most widely used case definition, a diagnosis of chronic fatigue syndrome requires six months of unexplained fatigue as well as four of eight other persistent symptoms: impaired memory and concentration, sore throat, tender lymph nodes, muscle pain, joint pain, headaches, disturbed sleeping patterns and feelings of malaise after exertion.

    The broadness of the definition has led to varying estimates of the syndrome’s prevalence. Based on previous surveys, the C.D.C. has estimated that more than a million Americans have the illness.

    Last month, however, the agency reported that a randomized telephone survey in Georgia, using a less restrictive methodology to identify cases, found that about one in 40 adults ages 18 to 59 met the diagnostic criteria — an estimate 6 to 10 times higher than previously reported rates.

    Many patients and researchers fear that the expanded prevalence rate could complicate the search for consistent findings across patient cohorts. These critics say the new figures are greatly inflated and include many people who are likely to be suffering not from chronic fatigue syndrome but from psychiatric illnesses.

    “There are many, many conditions that are psychological in nature that share symptoms with this illness but do not share much of the underlying biology,” said John Herd, 55, a former medical illustrator and a C.F.S. patient for two decades.

    Researchers and patient advocates have faulted other aspects of the C.D.C.’s research.

    Dr. Jonathan Kerr, a microbiologist and chronic fatigue expert at St. George’s University of London, said the agency’s gene expression findings last year were “rather meaningless” because they were not confirmed through more advanced laboratory techniques.

    Kristin Loomis, executive director of the HHV-6 Foundation, a research advocacy group for a form of herpes virus that has been linked to C.F.S., said studying subsets of patients with similar profiles was more likely to generate useful findings than Dr. Reeves’s population-based approach.

    Dr. Reeves responded that understanding of the disease and of some newer research technologies is still in its infancy, so methodological disagreements were to be expected. He defended the population-based approach as necessary for obtaining a broad picture and replicable results. “To me, this is the usual scientific dialogue,” he said.

    Dr. Jose G. Montoya, a Stanford infectious disease specialist pursuing the kind of research favored by Ms. Loomis, caused a buzz last December when he reported remarkable improvement in 9 out of 12 patients given a powerful antiviral medication, valganciclovir. Dr. Montoya has recently completed a randomized controlled trial of the drug, which is approved for other uses, but the findings have not been released.

    Dr. Montoya said some cases of the syndrome were caused when an acute infection set off a recurrence of latent infections of Epstein Barr virus and HHV-6, two pathogens that most people are exposed to in childhood. Ms. Flowers, the former figure skater, had high levels of antibodies to both viruses and was one of Dr. Montoya’s initial C.F.S. patients.

    Six months after starting treatment, Ms. Flowers said, she was able to go snowboarding and take yoga and ballet classes. “Now I pace myself, but I’m probably 75 percent of normal,” she said.

    Many patients point to another problem with chronic fatigue syndrome: the name itself, which they say trivializes their condition and has discouraged researchers, drug companies and government agencies from taking it seriously. Many patients prefer the older British term, myalgic encephalomyelitis, which means “muscle pain with inflammation of the brain and spinal cord,” or a more generic term, myalgic encephalopathy.

    “You can change people’s attributions of the seriousness of the illness if you have a more medical-sounding name,” said Dr. Leonard Jason, a professor of community psychology at DePaul University in Chicago.

    Updated from an article that originally appeared in The New York Times on July 17, 2007.
  2. sascha

    sascha Member

    i don't get how some PWC's "tame" their condition with exercise as one of the therapeutic components. i cannot exercise the slightest little bit.

    i know others have said the same thing. in fact, i've talked to a woman who used anaerobic exercise to get her back on track to regaining her health.

    maybe i've never really properly tried it. i know it's supposed to be so carefully graded and tracked. when i move it seems to exacerbate symptoms- all of them.

    well, after valcyte treatment, i'll see what i can do.

    thanks again- Sascha
  3. ephemera

    ephemera New Member

    Sascha, taming the beast is almost impossible. See also the other NY Times interview with researcher Leonard Jason, still on the road to recovery years later.

  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Sounds like more and more are publicly criticizing CDC. That likely means private urgings are not working. They are airing it out in the press.

    The comments are not about medical community in general. It is straight to problems in CDC.

    My question is, how was this article updated? What changes were made?

  5. TeaBisqit

    TeaBisqit Member

    The exercise thing and that they later mention how this disease has "similarities" to psychiatric disorders.

    I haven't been able to exercise with this in seventeen years. And not for lack of trying. Eventually, after enough times of ending up bedridden for a few weeks, you give up on that.

    There are ZERO similarities between this disease and mental illness. And I am so sick of them constantly having to bring this up all the time in nearly every article we read on it. Depressed people don't get swollen glands, Hashimoto's, irregular periods, swollen spleen, fevers, nightsweats, crushing fatigue so bad that they can't get out of the bed, inflamed nerves all over their bodies, severe allergic reactions to almost everything, the list goes on and on. Not to mention sound and light sensitivity, short term memory loss, and aphasia. Depressed people tend to be sad. We aren't sad, we're upset we're sick.

    I hate that they always have to showcase someone who got better with a pill. And they make it sound like, oh it's not so bad, take a pill and exercise and you'll be fine. Why can't they showcase someone who is bedridden or can't leave the house? This just makes me so mad. This is why no one takes us seriously. They read this junk and then they're like, go take your pill and exercise and shut up. It's like total false advertising.
  6. jasminetee

    jasminetee Member

    Thanks for posting this ephemera. It looks like we have a long battle ahead of us just trying to fight all the misinformation that's purposely being put out about CFS.


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