Wednesday, April 15, 2009

CFS Research Petition

I have set up the appended petition.


I know other people would have used other words but I wanted to keep things
as simple as possible.


If people write to me with alternative wordings, I do not promise to answer
as I have a lot of other work to be doing at the moment.  Other people can
always set up their own petitions if they like.


I have been somewhat understated in the hope that people will be willing to
sign it.
I hope researchers and medical doctors as well as patients and their loved
ones will sign it.


If people feel it is useful, please try to get as many signatures as
possible.  You don't have to post all of this - even just posting the links
is useful:
http://CFSdefinitionpetition.notlong.com
i.e.
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

People with websites, blogs, etc could link to it.

Tom Kindlon


P.S. People do not need to donate to the site.

~~~~~~~~~~~~~~~~~~~~~~
http://CFSdefinitionpetition.notlong.com
i.e.
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research


Title: CDC CFS research should not involve the empirical definition (2005)


Text:
The petition
We call on the Centers for Disease Control and Prevention (CDC) to stop
using the "empirical" definition[1] (also known as the Reeves 2005
definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS
research.

The CDC claim it is simply a way of operationalizing the Fukuda (1994)
definition[2]. However the prevalence rates suggest otherwise: the
"empirical" definition gives a prevalence rate of 2.54% of the adult
population[3] compared to 0.235% (95% confidence interval, 0.21%-0.536%) and
0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was
used in previous population studies in the US[4,5].

The definition lacks specificity. For example, one research study[6] found
that 38% of those with a diagnosis of a Major Depressive Disorder were
misclassified as having CFS using the empirical/Reeves definition.

References

[1] Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L,
Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome--a
clinically empirical approach to its definition and study. BMC Med. 2005 Dec
15;3:19.
Link: http://www.biomedcentral.com/1741-7015/3/19

[2] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The
chronic fatigue syndrome; a comprehensive approach to its definition and
study. Ann Int Med 1994, 121:953-959.

[3] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey
M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban,
and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.

[4] Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart
JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and
incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003,
163:1530-1536.

[5] Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR,
McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue
syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.

[6] Jason, LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease
Control's empirical chronic fatigue syndrome case definition. Journal of
Disability Policy Studies 2008, doi:10.1177/1044207308325995.

Further reading:
Problems with the New CDC CFS Prevalence Estimates
Leonard Jason, Ph.D., DePaul University
http://tinyurl.com/2qdgu4  i.e.
http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

Brief comment from Tom Kindlon: I have Chronic Fatigue Syndrome (CFS) for
over 20 years. I want a lot of research progress in my lifetime and believe
the empirical definition (2005) (also known as the Reeves definition (2005))
decreases the chances that this will occur this: abnormalities that would
show up using a more strictly defined definition won't show up using the
empirical/Reeves definition; and abnormalities that might show up in the
broad group covered by the empirical/Reeves definition are not necessarily
representative of CFS patients. This messes up the CFS literature even
further.


Petition sponsor:

Tom Kindlon, a patient with Chronic Fatigue Syndrome (CFS) for over 20
years. I have done a lot of voluntary work in the area for over a decade.
Recently I had two letters on CFS published in medical journals.


Links

The paper defining the empirical/Reeves definition can be read at:
http://www.biomedcentral.com/1741-7015/3/19

Some comments on the paper have been posted at:
http://www.biomedcentral.com/1741-7015/3/19/comments


An article by Leonard Jason PhD on the issue can be read at:
http://tinyurl.com/2qdgu4  i.e.
http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx
 
 
 
 
 


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1 comment:

TKno2 said...

Thanks for this. Hopefully others will link to it also. I'd like it come come up relatively high on Google searches for "empirical definition" as it puts a little more pressure on.

People can write comments as you have.