Johnson's new op-ed in the New York Times, Oct. 20 2009.
http://forums.aboutmecfs.org/showthread.php?p=3D8657#post8657
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Op-Ed Contributor: 'A Case of Chronic Denial'
by Hillary Johnson
Published: October 20, 2009
EARLIER this month, a study published in the journal Science answered
a question that medical scientists had been asking since 2006, when
they learned of a novel virus found in prostate tumors called
xenotropic murine leukemia virus-related virus, or XMRV: Was it a
human infection?
XMRV is a gammaretrovirus, one of a family of viruses long-studied in
animals but not known to infect people. In animals, these retroviruses
can cause horrendous neurological problems, immune deficiency,
lymphoma and leukemia. The new study provided overwhelming evidence
that XMRV is a human gammaretrovirus =97 the third human retrovirus
(after H.I.V. and human lymphotropic viruses, which cause leukemia and
lymphoma). Infection is permanent and, yes, it can spread from person
to person (though it is not yet known how the virus is transmitted).
That would have been news enough, but there was more. XMRV had been
discovered in people suffering from chronic fatigue syndrome, a malady
whose very existence has been a subject of debate for 25 years. For
sufferers of this disease, the news has offered enormous hope. Being
seriously ill for years, even decades, is nightmarish enough, but
patients are also the targets of ridicule and hostility that stem from
the perception that it is all in their heads. In the study, 67 percent
of the 101 patients with the disease were found to have XMRV in their
cells. If further study finds that XMRV actually causes their
condition, it may open the door to useful treatments. At least, it
will be time to jettison the stigmatizing name chronic fatigue
syndrome.
The illness became famous after an outbreak in 1984 around Lake Tahoe,
in Nevada. Several hundred patients developed flu-like symptoms like
fever, sore throat and headaches that led to neurological problems,
including severe memory loss and inability to understand conversation.
Most of them were infected with several viruses at once, including
cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors
were stumped. The Centers for Disease Control and Prevention, the
nation=92s presumed bulwark against emerging infectious diseases,
dismissed the epidemic and said the Tahoe doctors =93had worked
themselves into a frenzy.=94 The sufferers, a C.D.C. investigator told
me at the time, were =93not normal Americans.=94
When, by 1987, the supposed hysteria failed to evaporate and indeed
continued erupting in other parts the country, the health agency
orchestrated a jocular referendum by mail among a handful of academics
to come up with a name for it. The group settled on =93chronic fatigue
syndrome=94 =97 the use of =93syndrome=94 rather than =93disease=94 suggest=
ed a
psychiatric rather than physical origin and would thus discourage
public panic and prevent insurers from having to make =93chronic
disbursements,=94 as one of the academics joked.
An 11th-hour plea by a nascent patient organization to call the
disease by the scientific name used in Britain, myalgic
encephalomyelitis, was rejected by the C.D.C. as =93overly complicated
and too confusing for many nonmedical persons.=94
Had the agency done nothing in response to this epidemic, patients
would now be better off. The name functioned as a kind of social
punishment. Patients were branded malingerers by families, friends,
journalists and insurance companies, and were denied medical care.
(It=92s no coincidence that suicide is among the three leading causes of
death among sufferers.) Soon the malady came to be widely considered a
personality disorder or something that sufferers brought upon
themselves. A recent study financed by the C.D.C. suggested that
childhood trauma or sexual abuse, combined with a genetic inability to
handle stress, is a key risk factor for chronic fatigue syndrome.
Many people don=92t realize how severe this illness can be. It is marked
by memory and cognition problems, and physical collapse after any
mental or physical exertion. The various co-infections that occur only
make matters worse. Many patients are bedridden. And recovery is rare.
A significant number of patients have been ill for more than two
decades.
Dr. Nancy Klimas, an immunologist at the University of Miami School of
Medicine who treats AIDS and chronic fatigue syndrome, remarked in The
Times last week that if given the choice she would prefer to have
AIDS: =93My H.I.V. patients for the most part are hale and hearty,=94 she
said, noting that billions of dollars have been spent on AIDS
research. =93Many of my C.F.S. patients, on the other hand, are terribly
ill and unable to work or participate in the care of their families.=94
Congress has appropriated money for research on chronic fatigue
syndrome, too, though in far smaller amounts, but the C.D.C. has
seemed unwilling to spend it productively. A decade ago,
investigations by the inspector general for the Department of Health
and Human Services and what was then called the General Accounting
Office revealed that for years government scientists had been
funneling millions meant for research on this disease into other pet
projects.
As public health officials focused on psychiatric explanations, the
virus apparently spread widely. In the new study, active XMRV
infections were found in 3.7 percent of the healthy controls tested.
Roughly the same degree of infection in healthy people has been found
in the prostate research. If this is representative of the United
States as a whole, then as many as 10 million Americans may carry the
retrovirus.
It is estimated that more than a million Americans are seriously ill
with the disease. (Not everyone infected with XMRV will necessarily
get chronic fatigue syndrome =97 in the same way that not all of the 1.1
million Americans infected with H.I.V. will get AIDS.)
Hints that a retroviral infection might play a role in chronic fatigue
syndrome have been present from the beginning. In 1991, Dr. Elaine
DeFreitas, a virologist at the Wistar Institute in Philadelphia, found
retroviral DNA in 80 percent of 30 chronic fatigue patients. The
C.D.C. went so far as to try to replicate her effort, but refused to
follow her exacting methods for finding the virus. In addition, the
centers=92 blood samples became contaminated, and some people at the
agency said that administrators ended the research prematurely. Rather
than admit any such failure, the C.D.C. publicly criticized Dr.
DeFreitas=92s findings.
That episode had a chilling effect on other researchers in the field,
and the search for the cause was largely abandoned for 20 years.
Now, Judy Mikovits, the retrovirus expert at the Whittemore Peterson
Institute, in Reno, Nev., who led the recent study, has revisited the
cold case. Not surprisingly, the institute is private, created by the
parents of a woman who suffers from chronic fatigue syndrome. But Dr.
Mikovits collaborated with scientists at the National Cancer Institute
and the Cleveland Clinic.
When she began her work on this disease in 2006, Dr. Mikovits, a
22-year veteran of the National Cancer Institute, knew little about
chronic fatigue syndrome. But she was intrigued that an unusually high
number of patients being followed by a Nevada doctor were suffering
rare lymphomas and leukemias; at least one had died. And she was also
impressed that the doctor, Dan Peterson, had built an extraordinary
repository of more than 8,000 chronic fatigue syndrome tissue samples
going back as far as 1984.
=93My hypothesis was, =91This is a retrovirus,=92 and I was going to use
that repository to find it,=94 Dr. Mikovits told me.
What she found was live, or replicating, XMRV in both frozen and fresh
blood and plasma, as well as saliva. She has found the virus in
samples going back to 1984 and in nearly all the patients who
developed cancer. She expects the positivity rate will be close to 100
percent in the disease.
=93It=92s amazing to me that anyone could look at these patients and not
see that this is an infectious disease that has ruined lives,=94 Dr.
Mikovits said. She has also given the disease a properly scientific
new name: X-associated neuroimmune disease.
For patients who have been abandoned to quackish theories and harsh
ideologies about their illness for 25 years, the dismantling of
=93chronic fatigue syndrome=94 can=92t come soon enough.
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