Andrew
Senior Member
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I doubt that the IOM will use the same standard.
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How do they decide if someone is an expert?
To have an idea of how IOM chooses their panel members for a study in defining diseases, one can look at the current panel for defining CMI (used to be GWI).
http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49546
How many members of that panel have actually seen, treated or done research on Gulf War Illness patient?
For example, Drs. Fred Friedberg and Suzanne Vernon are on that panel.
A few are current members of the IOM. Psychiatrists/psychologists make up more than a third of the panel. I can only find three members with any experience with GWI. Some have previously worked for the NIH and/or CDC.
To have an idea of how IOM chooses their panel members for a study in defining diseases, one can look at the current panel for defining CMI (used to be GWI).
http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49546
How many members of that panel have actually seen, treated or done research on Gulf War Illness patient?
For example, Drs. Fred Friedberg and Suzanne Vernon are on that panel.
A few are current members of the IOM. Psychiatrists/psychologists make up more than a third of the panel. I can only find three members with any experience with GWI. Some have previously worked for the NIH and/or CDC.
Chilling and quite scary.
Maybe we as a community should start thinking in terms of how we are going to respond to the inevitable. That is, get out ahead of this. We are so ill it's hard to respond to things immediately but maybe we should have contingencies in place for when the IOM comes out with the report that we can't help but expect from them.
We should be pre-mobilized.
It will be 20 days.The first action along these lines is to scrutinize proposed panel members, due out next month I think. We can and should respond, but our time window is likely to be very short.
It will be 20 days.
We (many if us), are still fighting this full force. We need to stop it!Has everyone given up on STOPPING this? It needs to not happen in the first place. We have two perfectly fine definitions
formulated by experts.
That is quite actually insulting towards our experienced clinicians/physicians. It implies that they believe our experts couldnt do a diagnostic criteria good enough for non experts to use.
I personally think that those wanting OMI to do this, think the canadian definition is too complex and they are wanting something way easy eg to ignore most of the symptoms we have with this illness. There seems to be a reluctance to accept how complex our illness is.
I think some thought needs to be put into that too. Why would it be good for the USA to have "their own" definition of ME/CFS?. It is already the case of too many definitions out there.. just imagine if every country wanted their own definition!!! (that certainly dont help science).
What is really needed is one to be accepted worldwide, right now the CCC is the closest one to achieving that I think and if it could be adopted in America it will be getting much closer to achieving a world wide one (the CCC is already partly adopted in Australia, my state recognises it and opted to keep it.. along with the Australian definition one when that one was done).
Is entropy like I'm feeling like now? I don't know whether I'm living or dying or have been removed from the game. I stand by Leela's comments millions of per cents. And there's a hole in the part of my brain that used to understand what entropy is. Like your explanations though. They have kick-- dumb pun intended. Izola on sleep deprivation@leela, don't apologize. You are right on every point. Its so irrational its not just borderline stupid, it is stupid. Welcome to politics, and we are the political football.
Its a lot like the physics joke about entropy at the moment. Entropy is like a rigged game. You can't win, you can't break even, but you can't get out of the game.
Has everyone given up on STOPPING this? It needs to not happen in the first place. We have two perfectly fine definitions
formulated by experts.
Is entropy like I'm feeling like now? I don't know whether I'm living or dying or have been removed from the game. I stand by Leela's comments millions of per cents. And there's a hole in the part of my brain that used to understand what entropy is. Like your explanations though. They have kick-- dumb pun intended. Izola on sleep deprivation
I tried to do google searches but i couldn't turn up anything about how diagnostic criteria or case definitions are normally formulated.