cfs: Chronic Fatigue No Longer Seen as Yuppie Flu

[Guest guest]

>

> July 17, 2007

>

> Chronic Fatigue No Longer Seen as ‘Yuppie Flu’

>

> By DAVID TULLER

> http://www.nytimes.com/2007/07/17/science/17fatigue.html

>

> 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 centers have also

> sponsored a

> $6 million public awareness campaign about the illness. And last

> month,

> the C.D.C. 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, or C.F.S. 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. Reeves, the lead expert on the illness

> at the

> C.D.C., who helped expose the centers’ 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

> causes

> overwhelming fatigue, sleep disorders and other severe symptoms and

> afflicts more women than men. 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 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 post-exercise malaise.

>

> 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 disease control centers reported that a

> randomized telephone survey in Georgia, using a less restrictive

> methodology to identify cases, found that about 1 in 40 adults ages

> 18 to

> 59 met the diagnostic criteria — an estimate 6 to 10 times higher than

> previously reported rates.

>

> However, 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 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. Kerr, a microbiologist and chronic

> fatigue

> expert at St. ’s University of London, said the C.D.C.’s gene

> expression findings last year were “rather meaningless” because

> they were

> not confirmed through more advanced laboratory techniques.

> 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. ph 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 just

> begun

> a randomized controlled trial of the drug, which is approved for other

> uses.

>

> 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 chord,” 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 , a

> professor of community psychology at De University in Chicago.

>

[Guest guest]

Thank you for posting this. I joined this website

because sister-in-law has Chronic Fatigue Syndrome

(since 1998) and both of my children are on the

spectrum. My children have a family history of

autoimmune related disorders on both sides of the

family. I will send this article to her right now.

All the best,

Jill

--- Cheryl Lowrance <c.lowrance@...> wrote:

>

> >

> > July 17, 2007

> >

> > Chronic Fatigue No Longer Seen as ‘Yuppie Flu’

> >

> > By DAVID TULLER

> >

>

http://www.nytimes.com/2007/07/17/science/17fatigue.html

> >

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