usedtobeperkytina
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To all those with an interest: a letter from the PANDORA Org president.
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To all those with an interest: a letter from the PANDORA Org president.
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.
JR, you might be interested in formulation of the MS diagnostic criteria. Good model, excellent documentation:
Series of published MS Diagnostic Criteria each new one incorporating new MS research developments over time:
Schumacher Criteria 1965
Poser Criteria 1983
McDonald Criteria 2001
Revised McDonald 2005
Revised revised McDonald 2010
http://www.nationalmssociety.org/search-results/index.aspx?q=diagnostic criteria&start=0&num=20&x=19&y=14
This might interest you: composition of the 2001 McDonald Criteria International Committee of 16 members:
15 of the 16 panel members (94% of the total committee) were MD neurologists, clinicians & researchers, who specialized in MS; and
1 of the 16 panel members (6% of the total committee) was a PhD neuroscientist specializing in MS, VP of Research Programs at the National MS Society.
All were MS experts.
Medical specialty societies are frequently involved in the development of guidelines & criteria.
Aside, one MD neurologist worked at NIH, NINDS, on MS research.
When we spoke to an IoM study director for a study for another disease, we were told they prefer larger studies and double blind for clinical trials. I thought we were screwed. But when I asked her how many is a larger trial, she said 60-70. Well, we have lots of good studies on that. Smaller ones, with numbers of 30-40 are considered if there aren't any ones studying same thing with bigger numbers. The committee will also hear presentations from experts and patients and already have position papers (including the first one from PANDORA Org) that will be given to the committee members.
When we spoke to an IoM study director for a study for another disease, we were told they prefer larger studies and double blind for clinical trials. I thought we were screwed. But when I asked her how many is a larger trial, she said 60-70. Well, we have lots of good studies on that. Smaller ones, with numbers of 30-40 are considered if there aren't any ones studying same thing with bigger numbers. The committee will also hear presentations from experts and patients and already have position papers (including the first one from PANDORA Org) that will be given to the committee members.
I don't think it will cause the decades-long destruction that Fukuda and Oxford have, simply because our advocacy efforts are slowly growing, so this will shorten the time an IoM definition dominates the landscape. But if the IoM study is completed, I still think it will take years of hard advocacy to dislodge it from a dominant position. We need to stop this freight-train before it gains momentum.
This is our big opportunity to really make a difference! Lets hang in there and keep up our momentum (health-permitting), we are gaining.
if they consider overseas studies then the griffith uni cfs research would be classed as large studies, maybe this can get nk function into the criteria and make it a main stream lab test??
The study I was In had 160 people. They used fukuda criteria. Another thread here mentions another recent study they did using the CCC and nk results weren't that different??? Plus there are studies they have done that arent released yet, maybe soon??? I hope.Are those studies big enough to be counted as larger trial?
and are there other studies using crap defination people to counteract?
Is the 2 day test going to be able to be done by someone who is bedridden. I think they would be best to persue a blood test of some kind as the sickest would be excluded from any type of physical test.
if they consider overseas studies then the griffith uni cfs research would be classed as large studies, maybe this can get nk function into the criteria and make it a main stream lab test??
Whatever definition US HHS adopts or endorses or 'distributes' instantly becomes the default standard all over the globe- look at Fukuda for example. This is why the IoM MUST be stopped and CCC adopted. I am never giving up on this.
And isn't just darling how absence of "evidence" = somatoform.
Interesting how that works.