A great question hvs and one we should be asking all of our advocacy groups. The diagnostic criteria issue needs to be big now, not 6 months down the track when the CDC have swaggered on stage to "disprove" the WPI findings using samples from people who do not meet the criteria for ME/CFS.
I totally agree. The CAA should explicitly state NOW that only research that uses the Fukuda definition and the Canadian Consensus definition is valid. They should specifically state that the Oxford criteria and the Reeves definition do not define ME/CFS. The CAA should put out a statement that no government (or CAA) funding should be used for research using the Reeves definition. If they are not willing to do this it is my opinion that they do not represent us. If they fail to make this statement before the CDC publishes a study refuting the XMRV association using the Georgia or the Wichita 2-day cohorts they are actively harming us. In that case, they should change their name to ICFA: the Idiopathic Chronic Fatigue Association, or RDA: Reeves' Disease Association.
By the way, if anyone hasn't signed Tom Kindlon's petition against the Reeves definition now is the time to do it. Here's the link:
http://bit.ly/nYHy5
It would be great to see a few names from the CAA leadership on this petition. This could be difficult for Dr. Vernon, given that she was a co-author of the Reeves (2005) paper that introduced the definition, but it would be an indication of her awareness of the problems with the definition and her seriousness about correcting her error.
In addition, the CAA should:
(1) ask (again) for a replacement for Reeves.
(2) ask (again) for a new 5 year plan from Reeves' replacement and insist that researchers who have used the Oxford or Reeves definition in their research not be involved as reviewers, because they clearly do not understand the disease.
(3) fund a retrospective review of all ME/CFS research that looks at what criteria were used for each study so we get an overview of what we know about ME/CFS (as defined by Fukuda, Ramsey & Canadian Consensus) versus Idiopathic Chronic Fatigue versus Reeves' Disease. It would also be useful, if possible, to separate out the findings for people meeting Fukuda, Ramsey & Canadian Consensus, so we can see what are the differences (if any) between these groups. This is a logical study for them to fund; it is within their financial means. They should do it and have it ready for publication within a year.
(4) make sure the NIH funds a collaborative trials network.
(5) advocate tirelessly and transparently for at least 6 centers of excellence, including WPI, which can do research, train physicians and TAKE CARE OF PATIENTS.
(6) if and when there are 2 studies that verify the XMRV association with ME/CFS, immediately ask for a congressional investigation into why Elaine DeFreitas' research on retroviruses and ME/CFS was not pursued in the early '90s.
And to Khaly, you have my permission to include any of these comments in your communication with the CAA & thanks for your blog and your efforts!