Editorship : j.van.roijen@chello.nl
Outgoing mail scanned by AVG AV
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Quotes from below:
*....There is a movement developing around the
world of people using different terms, and some
are using the term M.E./C.F.S.
The C.D.C. and the CFIDS Association are two of
the last large organizations in the United States
who have not come aboard....*
``
*....So if your case definition is imprecise and you
blur the categories, and that brings into it people
who dont have the illness, you ultimately have
problems with estimating how many people have
it. ...*
``
*....If you have patient samples that are different,
ultimately what will happen is its very hard to find
genetic or biological markers because theres been
such imprecision in how its been identified. So
what happens is that people say, We cant find
anything, it must be psychogenic....*
~jvr
````````
From: Jill McLaughlin <mclaughlinjill@cox.net>
http://www.nytimes.com/2008/05/30/health/healthguide/esn-chronicfatigue-expert.html?scp=1&sq=chronic+fatigue+syndrome&st=nyt
New York Times
Expert Q & A
Learning Firsthand About
Chronic Fatigue Syndrome
By DAVID TULLER
Published: May 30, 2008
Leonard Jason is a professor of psychology at
DePaul University in Chicago and the director of
the universitys Center for Community Research.
He is on the Chronic Fatigue Syndrome Advisory
Committee to the federal Department of Health
and Human Services and is a board member of the
International Association for CFS/ME, an
advocacy group.
Leonard A. Jason, Ph.D
Q: What is it about chronic fatigue syndrome that
makes it so challenging for many people patients
themselves, doctors, family members?
A: Fatigue is a universal human experience, and in
fact most people are very hard-working and feel
fatigued a lot of the time. And severe fatigue is one
of the most common complaints that people bring to
their physicians. Because so many people have
general fatigue and continue to function, they think,
Whats that? Thats not a disease, its just a fact of
life. So theres a perception both among medical
personnel and the lay public that its something that
you push yourself through, you deal with it. Theres a
tendency to think, Well, youre stressed out, get
some better sleep, take some antidepressants.
With heart disease or cancer or AIDS, you have an
immediate feeling from your family, your work
associates, your friends, that this is something we
need to be sympathetic to, we need to make
accommodations for. Whats strikingly different
about this illness is that the majority of people not
only have to deal with a particularly debilitating
health problem, they also have to deal with the
stigma and societal reaction and disbelief and
illegitimacy, and that is crushing. Your work
colleagues say youre malingering, medical personnel
say theres nothing they can find so they'll refer you
to a psychiatrist, and your friends begin to complain
that youre never calling them, you've rejected them.
So this person is in the whirlwind of a terrain of
disbelief that is probably in some ways unique.
Q: Has the perception of C.F.S. changed over the
years?
A: I spend a lot of my time giving talks to audiences
of people I dont know, and I feel its very different
today vastly different than 20 years ago. At that
time, no one had heard of it and there was almost
universal disbelief. Today, that is much, much less. I
dont mean to suggest that there is no skepticism
remaining. Its still present. But it is my opinion that
the people who are skeptical havent really looked at
the literature. Its easy to nurse your skepticism
when you havent really bothered to look.
Q: How much would you associate the skepticism
with the name chronic fatigue syndrome, which is
used in the United States, instead of names like
myalgic encephalomyelitis or myalgic
encephalopathy, which are more common in other
countries?
A: The name is unfortunate. Its a terrible name,
because fatigue is the focus and that is differently
experienced by people who are healthy than by
people who have this illness. I do think if we called
bronchitis or emphysema chronic cough syndrome,
youd probably have very little respect for those
people, but a name thats more medical sounding
changes peoples perceptions.
When you have a more medical-sounding name,
youre saying the illness is not something fluffy, to
be downplayed and ignored, and health care
personnel think of it as more serious, more
debilitating. I hope there will be a new name, but
the problem is you dont change names lightly, even
bad names, because people come to recognize an
illness by a name. I think changing it will confuse a
lot of people, so it better be a new name that has
broader acceptability among patients and
researchers.
There is a movement developing around the world of
people using different terms, and some are using
the term M.E./C.F.S. The C.D.C. and the CFIDS
Association are two of the last large organizations
in the United States who have not come aboard.
Q: There are many people who think C.F.S. is just a
form of depression. Whats the connection between
the two?
A: The fast answer is, if you want to do a quick
diagnostic test, you could say, If you were well
tomorrow, what would you do? And the person with
C.F.S. would give you a list of things that they want
to get back to in their life, and the person with
classic depression would probably say, I dont know.
Eighty percent of people who have depression have
fatigue, but its not their most serious complaint.
They might have sleep problems, and some
cognitive problems that are common, and they can
end up being brought into the case definition for
C.F.S.
Some people with this disease do have depression.
If you basically have a person who says they were
feeling pretty good, now theyre sick, and then they
get depressed, they could have depression as well as
the illness. The real critical problem is when you
have a person who has solely depression and does
not have this illness, but has fatigue. So if your case
definition is imprecise and you blur the categories,
and that brings into it people who dont have the
illness, you ultimately have problems with
estimating how many people have it.
Q: Why does the estimateof how many people have
the illness matter?
A: This all goes back to case definition. If it includes
people who dont have the illness, some might say
that at least there are advantages to that because
it gives C.F.S. higher rates and more attention. So if
there are millions of people with this illness, it might
make the policy people take it more seriously. I think
one needs to be wary of that, because if you do
research with this broader group of people, and some
of them dont have the illness, and the question is
what is the biologic data, how do you interpret that?
If you have patient samples that are different,
ultimately what will happen is its very hard to find
genetic or biological markers because theres been
such imprecision in how its been identified. So what
happens is that people say, We cant find anything, it
must be psychogenic.
Q: You were diagnosed with C.F.S. many years ago.
How did that affect you?
A: That triggered my interest. I got C.F.S. in 1990
after having mononucleosis, and ended up having to
leave my work for about a year and a half. I said to
myself, Well, gee, if this is affecting me like it is, I
should try to do some research. I knew a little bit
about it, beforehand, and then I started reading the
literature.
The epidemiology done by the C.D.C. was
atrocious. What I read was that this was an
extremely rare disorder that affected less than
20,000 people, that it was primarily psychological,
that it affected primarily upper-middle-class
people, that it had a case definition that was put
together by consensus and not by research
methods, and that it had a name that was pretty
trivializing. The prevalence research was very
poorly done. The tests they were using were
inappropriate and had a real bias for psychiatric
morbidity. I realized that one needed to do basic
work in diagnostics and basic work in
epidemiology. I looked at it and said, Hey, Ive got
enough work here for the next decade. It was a
real work opportunity for me.
Q: How did you recover?
A: I would say that it was a very slow process. I had
the good fortune that most people dont have, in
that I had resources. I was a tenure-track professor
with a good income who had people rooting for me,
and nobody every questioned me or said youre
making this up, or its not serious. Everyone knew I
was a very hard worker, and they wanted me back.
How many people who get sick with this have that
opportunity? So they made it possible for me to build
myself back up. I had benefits and a full salary. I
had a work setting, and a friendship setting and a
support setting that most people dont have. Most
people, the first thing that happens is they lose their
job, and then they dont have enough money. Im still
somewhat careful about how much I do and what I
commit to. I think of myself as being 70 to 80
percent back, not 100 percent.
Publish date: 5/30/2008
Copyright 2008 The New York Times Company
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