"The grant is being provided to assist IACFS in their continued research and advocacy work and to support an upcoming workshop to develop clinical guidelines for chronic fatigue syndrome," stated Dr. William Carter, CEO
I'm with you marie. The Canadian Clinical Guidelines are the world's gold standard. What we need is a research definition that will be used in every future study. Then there will be no more problems with studies of apples disguised as oranges.
In my recent e-mail exchange with Dr. Friedberg, you might recall that he did say there is an effort underway to adapt the Canadian Definition for research:
It was agreed that setting up study criteria for the type of data that should be collected in a standardized way in CFS studies would be a good idea and not an impossibly time consuming task. For instance, there is an effort underway to provide standard assessments for the Canadian criteria--a worthwhile effort as these criteria may better capture CFS than other definitions.
I assumed that as president of the IACFS/ME he was talking about an effort within the IACFS/ME to do so.
It was also my impression from comments on the forum by Jennie Spotila ('IACFS/ME cohorts' thread) and in an email exchanges with Dr. Bateman, that Dr. Vernon, Scientific Director of the CAA, agrees strongly with the need for a better research criteria, most likely based largely upon the Canadian criteria. Jennie also alluded to something that was in the works. Dr. Vernon is on the Board of the IACFS/ME.
Here's the link to the cohort's thread: http://forums.aboutmecfs.org/showthread.php?2091-Cohorts-Letter-to-the-IACFS-ME. The actual letter is post #13. Dr. Friedberg's initial response is only a few posts later as he responded within 30 minutes. The full response by the board is post # 33. I will probably write him about the new funding and its impact on the time line within the next day or two.
I'm still getting my feet back underneath me but this was good news and a good reason to say that I'll be back in force soon.
PS. I'm having some problems with my user account (for some reason the forum won't let me edit my earlier post, nor can i view the day's new posts). I keep getting bumped off and then (magically?) logged back on. I probably won't consume a lot of energy trying to figure this out right now. I do hope everyone is well.
We're all having the same issues with the forum right now Shane.
FE, that's great news! We are finally getting the kind of support we need. A research definition that all doctors should adhere to would be great especially if it's based on the Canadian Definition of CFS.
The CFIDS Association of America The manufacturer of Ampligen has made an unrestricted grant to the IACFS/ME to convene a meeting for the purpose of writing clinical guidelines for CFS. IACFS/ME is an organization of clinicians and researchers interested in CFS; our scientific director Dr. Suzanne Vernon is on the board of IACFS/ME.