CFSAC criticised the CDC's empiric definition in one of its recommendations.
Tom]
As many people will be aware, at the CFSAC meeting at the end of October,
the committee passed a motion along the lines of the following:
"Recommendation 3:
The CFSAC objects to CDC's continued use of the inadequate and inappropriate
2005 "empiric" research definition for CFS. It recommends that CDC abandon
the empiric case definition and the fundamentally incorrect
conceptualization of chronic unwellness as being equivalent to CFS
incorrect." (source: http://www.cfids.org/cfidslink/2009/110401.asp ).
(I was going to wait till the last recommendations officially came out but
I've to put my head down now for a couple of weeks to work on a newsletter)
As people may or may not be aware, the CDC have used these criteria for
dozens of studies since the end of 2005: All the studies from the Georgia
cohort and all but one from the Wichita 2-day study*. This includes the
Pharmacogenomics studies in 2006 and also the CAMDA studies.
This issue has largely been ignored by the research community until
recently. I'm open to correction but I believe that the only two references
in the literature are two studies involving Prof. Lenny Jason:
Jason LA, & Richman JA ( 2008). How science can stigmatize: The case of CFS.
Journal of Chronic Fatigue Syndrome, 14, 85-103.
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0810C&L=CO-CURE&P=R4166&I=-3&
m=11343
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.
So well done and thanks to those five individuals for their work in the
area.
But in the last 6-7 months, I believe there has been a much greater
awareness of the issue.
I would like to think that is partly due to the petition that was set up
last April after I heard the CDC was putting together a 5-year plan:
"Petition CDC CFS research should not involve the empirical definition
(2005)"
http://bit.ly/nYHy5 i.e.
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research
This petition would probably win prizes in a category for "most obscure"
petition!
But over 2000 people signed it and I think this has helped to build momentum
to challenge the definition.
So thanks to everyone who signed it and particularly anyone who signed it
and who also encouraged other people to sign it or supported it in some ways
e.g. linked to it. It's probably bad to mention names as people will be
left out but two people who got behind the petition early were Mary
Schweitzer and Kasper Ezelius - they had both previously recognised problems
with the criteria as of course had some other patient advocates. (I know
others in more recent times have plugged the petition heavily on some forums
but full names were not given)
One thing that probably focused a lot of minds on the criteria the CDC were
using was the XMRV research so thanks to everyone who brought that
breakthrough about.
Thanks to Marly Silverman of PANDORA (www.pandoranet.info) who submitted the
petition to the CFSAC:
( http://www.youtube.com/watch?v=OLnBPGA3Lb4 at around 4.24)
"I am delivering to you a petition by Tom Kindlon, a CFS patient advocate.
As of today, there are 1893 signatures in this petition. The comments are an
eye-opening account of the diversity found within the patient community. It
could be a tool for potential CFS research"
Thanks to all those who testified. Unfortunately I have not seen or heard
all the testimonies but I know Dr Joan Grobstein brought the issue up in her
memorable testimony:
http://www.youtube.com/watch?v=WUDyby8A7tI&feature=related where she coined
the phrase, "Reeves Disease", to describe those who satisfy the Reeves (or
"empiric") criteria but not other CFS or ME/CFS criteria. Staci Stevens
gave a two-paragraph statement from Dr Eleanor Stein (psychiatrist)
criticising the definition:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0911a&L=co-cure&T=0&F=&S=&P=4
214
And thanks to the members of the Patient Care Committee for highlighting the
issue as well of course as everyone on the CFSAC.
Fingers crossed that with enough pressure no new studies by the CDC will be
produced using the definition and that eventually the criteria will be so
discredited that any studies using the definition will have low status. But
we're not there yet.
Bye for now,
Tom Kindlon
* It looks like for the Tilt Table study "Orthostatic instability in a
population-based study of chronic fatigue syndrome" (Jones JF, Nicholson A,
Nisenbaum R, Papanicolaou DA, Solomon L, Boneva R, Heim C, Reeves WC.
Am J Med. 2005 Dec;118(12):1415 published the same month empiric definition
came out) that they called the patients CFS patients if they had been
diagnosed with CFS in 1997-2000 but didn't mention that at the time of the
tilt table testing, most of the individuals didn't satisfy the CFS criteria
(they talk about more than 43 patients which is more than any of the other
studies)]
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