professional groups to engage with CDC in it's XMRV replication efforts
At the October 2009 CFSAC meeting held in Washington D.C., Dr. Nancy
Klimas raised concerns about CDC's XMRV replication effort to CDC
ex-officio Dr. Michael Miller, noting special concern in regards to
potential patient cohorts CDC might be using in their study. Dr.
Klimas noted that the only samples CDC has available to it are from
the Georgia GCRC and Wichita, Kansas population studies, both of which
used the 2005 'Empirical' definition for selecting participants. Dr.
Klimas went on to note that CFS prevalence rates which CDC devised
using the Empirical definition are highly inflated from previous
estimates. This concern is supported by research conducted by Prof.
Leonard Jason of DePaul University on the Empirical definition, which
found the Empirical definition does in fact include people with other
illnesses in place of CFS such as depression.
In his response to Dr. Klimas, Dr. Miller stated that the CDC CFS
program is not in charge of the CDC XMRV replication effort and if Dr.
Klimas had concerns she and others should contact CDC's retroviral
program which is in charge of conducting the study and "be a part of
this" by offering well-defined patient samples. However Dr. Miller's
emphasis seemed to be on the fact that CDC's CFS program was not in
charge of the replication effort which was not the concern raised by
Dr. Klimas, but rather the fact that CDC was using GCRC and Wichita
samples which were obtained using the Empirical definition which
focuses on 'unwellness'.
"I would ask you please, as the boss, to be careful how this is done,
it could do tremendous damage if it's done badly. Tremendous damage.
To get cohorts that are very cleanly described, very clear, and not
just the population based broad cohorts that you have in your freezer,
which is what you have in your freezer and all that you have in your
freezer, rather you let some of us that also have very well defined
cohorts in our freezers that were defined in a research setting for
Dr. Miller's response-
"...we are hoping that for those who are interested, as you certainly
have patient samples available, that if you are interested, I think
you should contact the retrovirus laboratory and offer those samples
and be a part of this. I think you will find an interest there."
I suggest that we as CFS patients, who are the ones with the most at
stake in this matter, approach as many CFS patient, professional and
research organizations as possible, both in the US and abroad, to
request that they to follow up on these concerns with CDC's
retrovirology program to voice their concern regarding CDC's
'Empirical' patient group and to offer well defined CFS patient
samples for CDC to include in it's XMRV replication effort. As has
been said before, an ounce of prevention is worth a pound of cure.
Email addresses for various organizations-
CFIDS Association of America- CFIDSLink@cfids.org
National CFIDS Foundation- firstname.lastname@example.org
National ME/FM Action Network- email@example.com
25% ME Group- firstname.lastname@example.org
CFS Research Foundation- email@example.com
ME Association- firstname.lastname@example.org
Irish ME/CFS Association- email@example.com
Irish M.E. Trust- firstname.lastname@example.org
Blue Ribbon for the Awareness of ME- email@example.com
Tymes Trust(website)- http://www.tymestrust.org/contactus.htm
INVEST in ME- firstname.lastname@example.org
ME/CFS Australia- email@example.com
Associated New Zealand ME Society- firstname.lastname@example.org
European ME Alliance(website)- http://www.euro-me.org/index.html
European Society for ME- email@example.com
ME/CFS Foreningen- firstname.lastname@example.org
Norges Myalgisk Encefalopati Forening(website)-
Riksföreningen för ME-patienter- email@example.com
Association Francaise du Syndrome Fatigue Chronique et du
CFS ASSOCIAZIONE ITALIANA- firstname.lastname@example.org
Fatigatio e.V. Bundesverband Chronisches Erschöpfungssyndrom-
ME/CVS Vereniging- email@example.com