In een uitgebreid artikel op Virology blog beschrijft
David Tuller (New York Times)
de geschiedenis rond ME/CVS in de VS, van de Lake Tahoe-uitbraak en de introductie van "CVS" tot aan vandaag,
inclusief de rol die het CDC en de CAA daarin gespeeld hebben.
Een aanrader voor mensen die van de geschiedenis willen leren.
Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale
by David Tuller
On a more substantive level,
over the past quarter-century,
the CDC's research program has yielded little or no actionable information about
causes, biomarkers, diagnostic tests, or pharmaceutical treatments.
The reason for those failures, critics charge, is that
the CDC spent years looking in the wrong places.
Starting with its 1988 report on the illness, they say,
the agency has downplayed or dismissed abundant evidence
that CFS is an organic disease, or cluster of diseases,
characterized by severe immune-system and neurological dysfunctions
as well as the frequent presence of multiple viral infections.
Results expected early next year
from a large NIH-sponsored study should settle the XMRV issue,
although not the issue of whether another retrovirus
might eventually be linked to cases of CFS.
Dr. Racaniello said that when he used to question
colleagues about chronic fatigue syndrome, they would argue that it
was an imaginary illness.
"Every time I asked someone about it, they would say it doesn't exist,
it isn't a real disease, even as recently as the past year," he said.
"But once you start paying attention and reading papers,
this looks like a chronic or hyper-immune activation.
These patients have a lot of signs
that their immune systems are firing almost constantly."
An emerging field of research —much of it taking place at
the University of Utah and University of the Pacific in Stockton, California–
people with CFS suffer from problems with
oxygen consumption, energy production and muscle recovery.
So it's not surprising that
increasing activity levels could lead in some or many cases to
a prolonged resurgence of their symptoms rather than the improvement
predicted by proponents of graded exercise therapy.
A Bit of History
over the nature and definition of CFS
–between the CDC and the patient community,
as well as between the agency and other researchers–
dates back to the initial investigations of
an outbreak in Incline Village, Nevada, near Lake Tahoe,
of a mysterious illness,
possibly associated with Epstein-Barr virus.
for many patients the CDC's first big blunder was in
not calling the Tahoe illness myalgic encephalomyelitis in the first place.
Benign myalgic encephalomyelitis
has long been recognized by the World Health Organization
as a synonym for "postviral fatigue syndrome,"
which is listed as a neurological illness.
The Financial Scandal
A 1999 report from the inspector general of HHS
found that of the $22.7 million
the CDC charged to its CFS program between 1995 and 1998,
less than half was clearly spent on the illness.
And in 2006,
the CDC published—with great fanfare–
a set of 14 studies in the journal Pharmacogenetics,
which found significant variations in CFS patients
of gene expression and activity
related to how the body handles and adapts to
physical and emotional challenges and stress.
Much of the research focused on genes
associated with the hypothalamic-pituitary-adrenal axis,
which regulates the body's stress responses,
among other functions.
The View from the Chronic Fatigue Syndrome Advisory Committee
(The CFIDS Association of America
had been criticized by some other advocates over the years
for its previous close association with Dr. Reeves.
The organization had provided essential public support for Dr. Reeves
during the accounting scandal in the late 1990s;
in the mid-to-late 2000s
it implemented the agency's controversial multimillion-dollar CFS public awareness campaign
at a time when others were seeking to change the disease name.
McCleary's public rebuke of Dr. Reeves' leadership, therefore,
was viewed as a significant blow to the CFS program and found a welcome audience.)
Dr. Klimas, also a committee member,
noted that she had been collaborating with the CDC
on a study comparing people with CFS and Gulf War illness, and
that the agency had failed to finish its testing on samples,
citing funding problems.
She also unleashed another common charge:
that the CDC was simply not interested in the role of pathogens.
According to the minutes,
Dr. Klimas said that
CDC has made it known that
the agency has no intention of looking for infectious agents.