Composition of IoM GWI/CMI redefinition panel: It Ain't Pretty

[justinreilly]

I did a break down of the experience of the IoM GWI redefinition panel. It's not pretty.

Only 1 panelist (6% of the entire committee) out of 16 had any clinical experience on GWI, and that was exclusively at VA.

The only panelist that had written any papers on GWI, Howard Kipen, MD, was a co-author of Wessely, Sharpe and Clauw and seemed fixated on the assertion that "medically unexplained symptoms" in veterans are not caused by disease. The phrase "medically unexplained" appears 22 times in his resume/cv.

Kipen, Wessely et al. state, in "Unexplained Symptoms After Terrorism and War: An Expert Consensus Statement" (2003), "Because an emerging disease manifesting only symptoms can be difficult to distinguish from overlapping clusters of unexplained symptoms like fibromyalgia and chronic fatigue syndrome, identification of a cause is useful for establishing the presence of disease...It is rare that an apparently novel illness based solely on unexplained symptoms can be shown to result from unique environmental exposures or disease processes."
http://simonwessely.com/downloads/publications/Other_p/96.pdf


5 panelists (31% of committee) previously worked at CDC, NIH and/or VA (and two did not disclose this in their bios).

6 (38% of committee) are Psychiatrists or Psychologists or work entirely in Psychiatry or Psychology. (though note that while Dr. Cory-Slechta received all her degrees (BA, MA and PhD) in psychology, she mostly works in other fields, such as environmental medicine, now).

1 (6% of committee), the Chair of the panel, Kenneth Shine, is both a Director of UnitedHealth Insurance (undisclosed in bio) and a past President of IoM. UnitedHealth is the nation's largest health insurer with $5.1 Billion in profits in 2011.


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


16 Committee Members

1 has clinical experience in GWI (at VA only)……….…......Ron Teichman, MD…….….......6% of committee

1 has (bad) research experience in GWI………..……..……Howard Kipen, MD……………..6% of committee

6 Psychology or Psychiatry……………………………………………………………...……….38% of committee
1 Neuropsychiatrist-………………………………..…………..Floyd Bloom, MD
1 Psychiatrist (specialist in psychosomatic medicine)-…James Levinson, MD
2 Psychologists (ie PhDs in Psychology)-……..……....…...Fred Friedberg, PhD
………………………………………………………….…..……Deborah Cory-Slechta, PhD
1 PhD working solely on biostatistics in psychiatry
in a dept. of Psychiatry-………………..……………......Jennie-Marie Leoutsakos, PhD
1 Psychometrician (who has been significant contractor
for VA and NIH and did a fellowship at VA)……………….…….Karon Cook, PhD

1 Director of UnitedHealth Insurance (undisclosed in bio)…Kenneth Shine, MD….……..6% of committee
(Chair of panel)

1 past President of IoM (1992-2002)…………………......…….Kenneth Shine, MD..…...……6% of committee
(Chair of panel)

5 previously worked for CDC, NIH and/or VA………………………………………………….31% of committee
1 NIH only (undisclosed in his bio)………………….....……..Floyd Bloom, MD
1 CDC only……………………………………………..……….Suzanne Vernon, PhD
1 NIH and CDC………………………………………..………..Thomas Mason, PhD
1 VA only………………………………………………..……….Ron Teichman, MD
1 VA fellow and significant contractor for
VA (both undisclosed in her bio) and NIH……………..…..…....Karon Cook, PhD

Note that a few of the committee members served on other panels at IoM and elsewhere on GWI, but I did not count this as 'research experience.'

 

[SOC]

1 has clinical experience in GWI (at VA only)………....Ron Teichman, MD……….….......6% of committee

0 have research experience in GWI………………………………………………………….....0% of committee

6 Psychology or Psychiatry……………………………………………………………...……….38% of committee

This part alone I find incredibly appalling -- only 1 person with clinical or research experience with the illness on the definition committee.

And then 38% of the committee made up of psych folks with an clear investment in keeping GWI as part of their turf. The resulting "defnintion" could have been predicted just by looking at the make-up of the committee.

 

[justinreilly]

Although he didn't mention it in his bio, I found that one member, Howard Kipen, has published a fair deal of literature reviews of GWI being 'Medically Unexplained Symptoms". Not the type of expert researcher I'd like.

 

[Ren]

Thanx, J.R.!!

 

[Chris]

Many thanks for a bit of real work, JR! It doesn't make me happy, but it makes things even clearer. We await the publication of our tribunal with concern. Chris

 

[Gemini]

Only 1 panelist (6% of the entire committee) out of 16 had any clinical experience on GWI, and that was exclusively at VA.

JR excellent analysis! A quick look at the ME/CFS ICC Panel of 26 members using your format:

16 panelists (62% of the entire committee) out of 26 are MD clinicians with ME/CFS knowledge/experience;

9 panelists (34% of the entire committee) are researchers working in the ME/CFS field;

1 panelist (4% of the entire committee) is an educator.

Note: There are immunologists, infectious disease specialists, cardiologists, endocrinologists, internal medicine, hematologists, pediatricians, etc. represented. There are no psychiatrists/psychologists on the ICC panel. For names, panelists and affiliations are listed inside the cover of the ICC Primer.

 

[Izola]

And, again, thanks JR
In considering the words, the phrases, the meandering definitions used by the IoM -- I couldn't read the whole article-- the IoM's scrambled definition of terms, their illogic, makes the remaining related remnants in my brain of 7 years of college swarm around like maggots on a dead mouse, There's no solid footing when dealing with this, is there? I'm in way over my head.
IoM says "Conflict of interest means more than bias???? Doesn't conflict of interest often lead to bias? I didn't know they were big and small parts of the same thing, Sort of like apples mean more than cherries?
"Rules of evidence?" Whose rules? Are they made up on the fly, definitions as needed? Where are they?. Certainly not in the Federal Rules of Practice.
Bias, conflict of interest, point of view, diversity of experts, evidenced based mean what they mean when they mean it and not when they don't? That whole Million Dollars is stuck in this quagmire. And so are we.
Will the Queen of Hearts preside? Let them not cut off our heads.

 

[justinreilly]

I just added that the only panelist who has written any papers on GWI, Howard Kippen, has the phrase 'medically unexplained' 22 times in his resume.

 

[leela]

I'm especially troubled by "Director of United Health Insurance."
Not only does that entity have no business defining a disease, but could anything be a greater conflict of interest?
Fer frak's sake.

 

[Chris]

Hi--as if in defiance of the IOM stuff, the Dept of Defence has just given a big $4,000,000 grant to study GWI to Nancy Klimas, Gordon Broderick, and the whole group down in Florida! Chris
http://www.prnewswire.com/news-releases/nova-southeastern-university-researchers-receive-41-million-grant-from-department-of-defense-to-investigate-gulf-war-illness-232529291.html

 

[leela]

Hi--as if in defiance of the IOM stuff, the Dept of Defence has just given a big $4,000,000 grant to study GWI to Nancy Klimas, Gordon Broderick, and the whole group down in Florida! Chris
http://www.prnewswire.com/news-releases/nova-southeastern-university-researchers-receive-41-million-grant-from-department-of-defense-to-investigate-gulf-war-illness-232529291.html

w00t!

 

[Ren]

I just added that the only panelist who has written any papers on GWI, Howard Kippen, has the phrase 'medically unexplained' 22 times in his resume.

Just an fyi - when seeing the "medically unexplained" phrase, I remembered a quote from the most recent Gulf War and Health text (2013):

"In 2001, IOM released a report, Gulf War Veterans: Treating Symptoms and Syndromes, which examined how to manage medically unexplained physical symptoms (MUPS; termed CMI in this report) (IOM, 2001)." (p.12)

http://www.publichealth.va.gov/exposures/gulfwar/reports/instituteofmedicine.asp


P.S. Post 10 rocks!!

 

[leela]

Just as an aside, how absurd is it that responsibility for things "medically unexplained" falls on the psyches of those experiencing them, rather than the perspicacity or ability of those who are not yet clever enough to discover the explanation?

 

[Andrew]

I'm especially troubled by "Director of United Health Insurance."
Not only does that entity have no business defining a disease, but could anything be a greater conflict of interest?
Fer frak's sake.

Which one is that?

 

[justinreilly]

Andrew, Kenneth Shine, the chair of the panel, who is also a past president of IoM. His United Health Insurance board membership was not disclosed in his bio.

 

[Izola]

Hi--as if in defiance of the IOM stuff, the Dept of Defence has just given a big $4,000,000 grant to study GWI to Nancy Klimas, Gordon Broderick, and the whole group down in Florida! Chris
http://www.prnewswire.com/news-releases/nova-southeastern-university-researchers-receive-41-million-grant-from-department-of-defense-to-investigate-gulf-war-illness-232529291.html

I read this days ago in my smfog (close to the FWY) I just read it again, OMG WOW!! 4 Million for the good guys. Is the universe reversing itself? Throw the Weasel to the sharks, mates.

 

[Izola]

Andrew, Kenneth Shine, the chair of the panel, who is also a past president of IoM. His United Health Insurance board membership was not disclosed in his bio.

And we don't think that membership was well known in the IOM & DHHS circles?

 

[justinreilly]

And we don't think that membership was well known in the IOM & DHHS circles?

I don't know. But this falls under the category of 'known or should have known." Not knowing isn't a defense. They should have made it clear to all potential panel members that disclosure of conflicts is essential and they should have asked. Either they didn't do this or Shine or his agents (for whom he is responsible) knowingly did not disclose.

For people who had official bios already on the web, these were just copied and pasted, either by IoM or the panel members. The bios should be more tailored to the process- answering are there any conflicts or biases? and what is this person's experience with the subject matter of the report. This was pointed out in high relief by the report on the bias and conflicts on IoM panels- there is another thread here devoted to that report.

Plus the guy is the chair of the committee and a past president of the IoM. So IoM should have been 'duely diligent' in checking for conflicts. I found it with a google search. and he should have been duly duely diligent in disclosing them.

 

[Ren]

Could someone pretty please (just superficially so I have the gist of things) explain why this GWI/CMI redefinition panel exists? I first misunderstood these individuals to be part of the GW&H IOM text series. Is the current committee related to the frustration and GWI testimony before congress House Armed Services Subcommittee on Oversight and Investigations (?)? I'm evidently confused.

 

[justinreilly]

Hi--as if in defiance of the IOM stuff, the Dept of Defence has just given a big $4,000,000 grant to study GWI to Nancy Klimas, Gordon Broderick, and the whole group down in Florida! Chris
http://www.prnewswire.com/news-releases/nova-southeastern-university-researchers-receive-41-million-grant-from-department-of-defense-to-investigate-gulf-war-illness-232529291.html

Iirc, this money was given out by the congressionally created GWI research panel/group, I am not sure what its official name is. It was set up in response to vets complaining that VA was screwing them over. Anthony Hardie, the GWI advocate said that they do a great job and he hears from people with other illnesses where there is one of these that those patients are happy too. I took a look and I found several of them, they all seem to be in the VA. Maybe the VA is screwing up a lot of diseases and have to have these groups.

We need something like this. There would probably be resistance to it though since we are not veterans. But, I think worth looking into. congress generally differs to NIH and CDC because NIH and CDC are supposedly the subject matter experts, but they don't to VA. Is that because the vets have a stronger lobby than us? Bc VA has a worse reputation than NIH and CDC?