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CAA stops dissenting opinions

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
Just thought I'd let you know that I posted dissenting opinions on two different CAA statements regarding the IOM about a month ago. They are still sitting in moderation.

Here's one them:

The initial discussion said to have a workshop. Many of us assumed that experts would hold decision making positions. That experts would vote. Instead, the HHS puts non-experts in charge of the process.

Question: Why would someone turn to a group of inexperienced illness criteria authors (IOM) who did a poor job on their only previous attempt, instead of accepting the advice of the actual experts?

Answer: From a business, medical, or humanitarian point of view, there is zero justification.

The fact that they will be asking for input from experts makes no difference. It is still the IOM running the show. They will be deciding what weight to put on things without the advantage of years of experience.

If it is true that expert input will be valued here, then why not simply accept what the majority of experts are saying. Cancel the contract, adopt the CCC, and let the experts continue with their work vetting the ICC.

The process of developing the next generation definition has already begun. The IOM project fills no void. All it does is usurp an existing project and take control out of the hands of experts.

Your comment is awaiting moderation.
 

Nielk

Senior Member
Messages
6,970
It is pretty sad @Andrew that they don't seem to put much weight in what patients think or express. I thought they were an organization that worked for the patients.
 

Seven7

Seven
Messages
3,444
Location
USA
What we need is exposure exposure exposure., Make noise!!!! In the news find a way for it to be covered.

Anybody with influence???
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I found my other message that the CAA is still holding in moderation:

Andrew Bokelman 11. Oct, 2013 at 8:22 pm #

“promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes”.

If this is a correct quote, it demonstrates just how underhanded the HHS is. They have not convened something made up of ME/CFS experts, patients, and advocates in consultation with CFSAC. They have pushed those parties aside and gone to an organization that is none of the above. It in no way meets the request, and to pretend that it does is an insult to us all.

Your comment is awaiting moderation.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I've got a comment in held in moderation since the 14th on their last post. I think their strategy is to not publish any critical comments at least until that post has moved down from the latest post so very few people if anyone will see it. Though they have been going way beyond that with you, Andrew, not publishing yours for over a month!

My comment:
"Disappointed by CAA once again.

Yes, HHS and IoM have credibility and dissemination expertise. But HHS could disseminate and lend credence to CCC more easily than going through the whole farcical process. And great we get dissemination, but what about the ACCURACY of what is disseminated?? and all the stress this is putting us thru trying to figure out whats going on and how to stop it.

This is the third puff piece on IoM Ive seen in a few days. Looks like business as usual at CAA."

http://solvecfs.org/cfids-association-update-cfs-advisory-committee/