Discussion in 'General ME/CFS News' started by fresh_eyes, Jan 21, 2010.
Grant is for more general purposes
From the article:
Frankly, I don't see why the IACFS/ME can't just put their weight behind the Canadian Clinical Guidelines. Why reinvent the wheel?
Otherwise, I'm all in favor of seeing some of the Ampligen profits go to the IACFS/ME.
Let's hope other drug manufacturers follow this lead.
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.
Thanks for posting this fresh eyes.
IACFS/ME and the Canadian Definition
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:
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.
This is very good news.
Link to thread and letter to IACFS/ME on cohorts
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.
From the CAA's Facebook wall:
This seems like really good news to me, too. If the clinical guidelines are going to get firmed up, these are the folks to do it. (Also it seems this means Ampligen is not DOA as some thought, huh??)
Great news! I really think this route is going to be more productive in the short term...
Thanks to all for the posts.
Glad to give you some good news, Shane. This totally fits with your mission re the cohorts, doesn't it? Now back to resting, you! :sofa:
Yes - hopefully this is what it will amount to, making the Canadian guidelines more user-friendly.
You can also try a Google Site Search
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