IOM Panelists: Balancing Act

[Ember]

December 13th, 2013 Jennie Spotila

There is a good deal more to discuss about the Institute of Medicine ME/CFS case definition panelists beyond their individual backgrounds (see the known and unknown panelists’ profiles). Our team has been grappling with those issues, not always achieving consensus. We hold a spectrum of opinions, and it forms an important context for providing feedback to IOM on the panel.

The Moral Question

The reasons for the ME/CFS community’s opposition to the IOM study have been extensively explored over the last three months. Part of the struggle has been over what to do about it. Some advocates believe we should contribute to the process in a constructive way by providing feedback on the panelists and input on the substantive issues. Others believe that participation in the process is not only pointless, but will actually legitimize an illegitimate process. They advocate unconditional and complete resistance to the IOM study, and state that no advocate should provide feedback on the panel. There are other views as well, and everyone is entitled to act on their views as they see fit.

Read more...

 

[Ember]

In comment #19, Mary Dimmock addresses the IOM's so-called balancing act: “None of us want to end up with criteria that continue to lump ME in with the broader set of conditions that meet CFS criteria.... Personally, I dont think this panel is appropriate for the task at hand.” How likely is this provisional slate to recommend, as does the International Consensus Panel, that ME patients be removed from the broader CFS category?

 

[alex3619]

http://www.iom.edu/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust/Standards.aspx

STANDARD 3
Guideline development group composition
3.1 The GDG should be multidisciplinary and balanced, comprising a variety of methodological experts and clinicians, and populations expected to be affected by the CPG.

3.2 Patient and public involvement should be facilitated by including (at least at the time of clinical question formulation and draft CPG review) a current or former patient and a patient advocate or patient/consumer organization representative in the GDG.

3.3 Strategies to increase effective participation of patient and consumer representatives, including training in appraisal of evidence, should be adopted by GDGs.

Where is our patient representative and patient advocate or patient organization in this panel?

 

[WillowJ]

Where is our patient representative and patient advocate or patient organization in this panel?

Lily Chu
Dr. Lily Chu holds degrees from the University of Washington (BS, MD) and University of California, Los Angeles (MSHS) and is board certified in both internal medicine and geriatric medicine. Dr. Chu is also a patient with ME/CFS and is very knowledgeable about issues including definition, diagnosis, treatment, and disability....

http://www.occupycfs.com/2013/12/07/iom-panelists-the-knowns/

Patient advocate or organization is still missing, as far as I can tell.

 

[Ember]

“Some advocates believe we should contribute to the process in a constructive way by providing feedback on the panelists and input on the substantive issues.” But here's a good counter-argument: “IOM will not stack the panel with 100%, or even 80%, ME/CFS experts.”

 

[alex3619]

“Some advocates believe we should contribute to the process in a constructive way by providing feedback on the panelists and input on the substantive issues.” But here's a good counter-argument: “IOM will not stack the panel with 100%, or even 80%, ME/CFS experts.”

The IOM cannot have 100% ME experts, its against their rules.

The issue to me is the Institute of Medicine is being asked to give an evidence based verdict on an area that is still under investigation. Such a decision is best undertaken by experts, its not something that can be determined by non-experts. Even our experts can be wrong, but they at least start with an understanding of the issues. This EB process by the IOM is premature.

If the HHS really wanted this resolved then the solution is simple: inject massive research funds into ME and then if they want then also chronic fatigue. In the absence of this then the best option is to cancel the contract.

HHS has repeatedly demonstrated that ME has no priority with them, indeed the actions of the CDC have for decades impeded improvement of the situation, and it appears that is still what they are doing.

Its good having some of our experts on the panel only if they have the freedom to act. The IOM evidence based process clearly failed with GWS, and the process has failed on other occasions. This has been written up in reviews, something the IOM appears to like, so why don't they fix it?

 

[Gemini]

The issue to me is the Institute of Medicine is being asked to give an evidence based verdict on an area that is still under investigation. Such a decision is best undertaken by experts, its not something that can be determined by non-experts. Even our experts can be wrong, but they at least start with an understanding of the issues. This EB process by the IOM is premature.

Agree completely. Have been looking at methods used for other diseases for example:

NIH's National Institute of Aging(NIA) + Alzheimer's Association developed the "1984 Alzheimer's Diagnostic Criteria" using expert panels.

This criteria was in use for 27 years.

In 2009, NIA + Alzheimer's Assoc. held a series of advisory roundtable meetings to revise the criteria based on new scientific knowledge.

In 2011 the newly revised Alzheimer's diagnostic criteria were published.

The old criteria comprised 1-stage of disease, dementia, the new 3-stages: no symptoms, mild cognitive impairment, & dementia.

The new criteria allow for clinical or research use & importantly biomarker use for research.

http://www.ncbi.nlm.nih.gov/pubmed/21514247

 

[alex3619]

@Gemini, one thing that struck me from the Alzheimers paper is that biomarkers need to be continually evaluated. Doing so after you have the first biomarker is something that is covered under EBM rules. Its getting that first recognized biomarker that is our problem. I expect that to happen sooner rather than later. We are so close with markers.

 

[August59]

The IOM cannot have 100% ME experts, its against their rules.

The issue to me is the Institute of Medicine is being asked to give an evidence based verdict on an area that is still under investigation. Such a decision is best undertaken by experts, its not something that can be determined by non-experts. Even our experts can be wrong, but they at least start with an understanding of the issues. This EB process by the IOM is premature.

If the HHS really wanted this resolved then the solution is simple: inject massive research funds into ME and then if they want then also chronic fatigue. In the absence of this then the best option is to cancel the contract.

HHS has repeatedly demonstrated that ME has no priority with them, indeed the actions of the CDC have for decades impeded improvement of the situation, and it appears that is still what they are doing.

Its good having some of our experts on the panel only if they have the freedom to act. The IOM evidence based process clearly failed with GWS, and the process has failed on other occasions. This has been written up in reviews, something the IOM appears to like, so why don't they fix it?

It is just a little bit to early in the present research for the IOM to be developing a definition for our disease. The don't have accurate information to make it off of. They are just wasting money that could be used much more wisely right now.

 

[alex3619]

It is just a little bit to early in the present research for the IOM to be developing a definition for our disease. The don't have accurate information to make it off of. They are just wasting money that could be used much more wisely right now.

Exactly.

 

[August59]

Exactly.

I really wish this could get thoroughly explained to the right person and from the right person, so that is understood by the HHS, NIH and IOM that we are not so opposed to having a definition developed, but that it should not be developed till the proper studies have been completed that present some commonalities and replications. At this point a definition will have published scientific studies for the IOM to reference, instead of looking all over half the world to find studies that are in contradiction to each other in a lot of cases.

I would feel much better about the IOM definition creation if they had published data that should be out within a year to 18 month at the most I hope. Some of the top names in the business are in a major hunt now and we should be focusing our attention on making sure none of these run out of money with all this crazy budgeting going on and not trying to fight a fight where we can't even see our opponents through all the weeds!!