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Cohorts - Letter to the IACFS/ME


Senior Member
The importance of maintaining credibility

So, Shane, would it be fair to say, based on Jason's work, that the CDC Empirical criteria give a 62% false positive rate? (Sorry for bothering you Shane, when you should be resting.)

Gerwyn, were you thinking of Jason or something else when you mentioned 66% false positives?

A key issue here is the notion of false positives based upon what? The Canadian Criteria, Fukuda, etc.? I think the Jason article gets it right. It does not try to assume that we have ONE set of diagnostic criteria at this point in time. All Jason says is that when using the CDC criteria, you get 38% of those diagnosed with CFS as actually having Major Depression, not CFS. The other point to keep in mind is that the CDC criteria yields an estimated prevalence of nearly 4 times that of the population estimates using other Criteria (I need to verify and I also need a reference but if I recall correctly, this was measured against the Canadian Criteria as well).

We need to be careful when citing numbers and stick using figures we can back up. Doing so can only help with our credibility.

Now I really am checking out for a few days (feel free to remind me to stop being an "idiot").


Patient in training
So, any thoughts, suggestions, recommendations, etc.?

The IACFS/ME clearly feels that the Canadian criteria is amongst (if not the) the most useful diagnostic criteria (...may better capture CFS than other definitions.) and it is good news to hear that efforts are now underway to operationalize it for research purposes.


Shane, what a great job you did. First you got Dr Friedberg's attention, but the fact that he forward that to all the board members and perhaps the most prominent researchers is grand!

To get motion approved takes a little time, that is agreed, but the fact that the discussions are happening NOW, helps people being aware and change their practices for their future researches.
Think about it, do you want to be in the group that publishes using a recognized, standard cohort, ie Canadian consensus, or would you actually prefer being careless, pick Reeve's disease cohort, and get cricticized about the cohort choice, and being told your study is invalid- the research grant givers won't be happy about that.

The rules are changing, the community, the researchers are talking. The commnents are piling in blogs, journals online, major papers. There will come a day, very soon, where Wessleys, Reeves, and their gangs, will be all by themselves in a sandbox while the rest of them researchers have long got on with the program.

The wheel is turning- the smart one have already jumped on board.

ETA sorry for the late post, had laptop issues and mostly horizontal these days.