Leonard Jason -Learning Firsthand About CFS

[Guest guest]

>>> Help ME Circle <<<<

>>>> 30 May 2008 <<<<

Editorship : j.van.roijen

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

 

..........................................................................

 

 

Jill McLaughlin <_mclaughlinjill_

(mclaughlinjill) >

 

 

_http://www.nytimes.com/2008/05/30/health/healthguide/esn-chronicfatigue-exper

t.html?scp=1 & sq=chronic+fatigue+syndrome & st=nyt_

(http://www.nytimes.com/2008/05/30/health/healthguide/esn-chronicfatigue-expert.\

html?scp=1 & sq=chronic+fatig

ue+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 estimate of 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

 

 

 

 

~~~~~~~~

~~~~~~~~~~~~~~~~~~~~~~~

Send an Email for free membership

~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:

>>> Help ME Circle <<<<

>>>> 30 May 2008 <<<<

Editorship : j.van.roijen

Outgoing mail scanned by AVG AV

~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:

(http://www.papercut.biz/emailStripper.htm)