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IOM List of Provisional Committee Members has been posted 3 Dec 2013

Denise

Senior Member
Messages
1,095
Roy S - I am not sure if this answers your question
@jspotila (or anybody else)
Sorry if I missed it, but is there any comparable information about the IOM previously changing any committee membership?
 



Committee Membership Roster Comments

Note (08-13-2013): There has been a change in committee membership with the appointments of Karon Cook, Jeannie-Marie Leoutsakos, and Anne L. Oaklander.



http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49546


Statement of Committee Composition

Dr. Jeffrey Sanchez-Burks resigned from the Committee on 4/2/2013.

The following new appointment has been made to the committee effective 7/9/2013: Dr. Corinne Bendersky.



http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49515


Committee Membership Roster Comments

Note (11-19-2013): There has been a change in committee membership with the appointment of Harry Holzer and Kasisomayajula Viswanath; and committee member LaDonna Pavetti resigned from the committee.



http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49589





Committee Membership Roster Comments

Note (11/18/2013): There has been a change in committee membership with the appointment of Dr. Dale G. Uhler..

http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49585
 

Ember

Senior Member
Messages
2,115
Cort is either extremely naive or just kissing up to the establishment, something he has a long history of doing.
Cort underestimates the IOM task. Under his heading, “A Diagnostic Tool – Nothing More, Nothing Less,” he writes, “The IOM is tasked with producing a descriptive document that provides criteria to help physicians know ME/CFS when they see it.” He explained earlier his own view of developing clinical diagnostic criteria:
October 31, 2013 at 2:32 pm

I want to point out that this is a definition to help doctors know ME/CFS when they see it; its a descriptive definition – it doesn’t say what ME/CFS is or isn’t; it’s not a treatment guide for ME/CFS and it’s not research definition – it’s a description of what ME/CFS looks. This is not that difficult of a process....
The experts address Secretary Sebelius in a very different manner: “We strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop 'clinical diagnostic criteria' for ME/CFS.”
 

Nielk

Senior Member
Messages
6,970
HHS' Statement of Work reads:

Clinicians and medical professionals disagree on many aspects of ME/CFS, ranging from frank
disbelief in the illness to confusion about the application of clinical diagnostic criteria. In
collaboration with CFSAC ex officio agencies (including NIH) HHS will request that the IOM
develop consensus clinical diagnostic criteria for this disorder.

This task is not to just publish a little leaflet that clinicians can glance at. This is to develop the clinical diagnosis criteria.

If it is such a 'simple' task as Cort claims, why spend one million dollars and 18 months to do so? If the aim was to just simplify matters so that primary care doctors could folllow, why not assemble a workshop through CFSAC to do so?

The charge to IOM is to DEVELOP not to SIMPLIFY.
 

Denise

Senior Member
Messages
1,095
HHS' Statement of Work reads:



This task is not to just publish a little leaflet that clinicians can glance at. This is to develop the clinical diagnosis criteria.

If it is such a 'simple' task as Cort claims, why spend one million dollars and 18 months to do so? If the aim was to just simplify matters so that primary care doctors could folllow, why not assemble a workshop through CFSAC to do so?

The charge to IOM is to DEVELOP not to SIMPLIFY.

I am pretty sure I understand what you are saying but given that the intended audience of the IOM product is "primary care clinicians (which include physicians, nurse practitioners, and physician assistants)", , and since the CDC has said that the CCC is too complicated for that audience, it could be argued that what the IOM has been charged to do IS in fact to simplify, so that primary care clinicians are able to understand and recognize the illness IOM is developing criteria for.
 

medfeb

Senior Member
Messages
491
"The illness that IOM is developing criteria for"… That's the real question - what illness is HHS developing criteria for.
HHS has not said that they are developing criteria specifically for the disease described by the CCC. In fact the exact opposite. HHS staff have talked about ME as a subgroup of a broader set of CFS conditions. Think about criteria for medically unexplained fatiguing conditions with ME as a subgroup.

That may make it simpler for primary care physicians to assign patients into a diagnostic code but it will not help patients get the kind of care they need.

Further, the range of conditions covered by the IOM criteria will need to have some semblance to the range of diseases covered by the research definition even if the research definition is tighter. Otherwise, it will be impossible to translate between the clinic and research. So we can expect that if the IOM criteria describes a broad range of conditions with ME as a subgroup, then the NIH evidence based methodology workshop will also.
 

Ember

Senior Member
Messages
2,115
HHS staff have talked about ME as a subgroup of a broader set of CFS conditions. Think about criteria for medically unexplained fatiguing conditions with ME as a subgroup....

We can expect that if the IOM criteria describes a broad range of conditions with ME as a subgroup, then the NIH evidence based methodology workshop will also.
Your insistence that ME not be treated and studied separately as a subgroup has you outstripping the experts. The ME Primer calls for research confirmation: “When research is applied to patients satisfying the ICC, previous findings based on broader criteria will be confirmed or refuted. Validation of ME being a differential diagnosis, such as cancer and multiple sclerosis (MS), or a subgroup of chronic fatigue syndrome, will then be verified.”