Tuesday, January 31, 2012

Blogging live from the RAC -- Sections 5.7

Blogging live from the RAC -- Sections 5.4, 5.5. 5.6

To follow along, the draft plan is at: http://www.scribd.com/doc/79701467

The call-in number is toll-free 1-800-767-1750 and the access code is 82477# .

The full agenda provided to RAC members today is here: https://docs.google.com/open?id=1Sas5UyjORc9Jb0mwCQxNfOfvPT1ofYQOtA5l2OytHsHm-Ve8SrgCTbTaLLZQ.

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1:40 p.m. -- back from lunch break. New discussion on 5.4 Genetics/Genomics/Systems Biology (beginning p. 33).

Dr. Grosser presented the recommendations of the subcommittee, with goals on pp. 34-37.

Discussion about Million Veteran Program, and that the recommendation is written in such a way that it would be a way to validate

Ms. Binns. ALS brainbank, CSP #501A, a brain repository originally billed as a Gulf War brain bank today has just one brain out of 61 in the brain bank is Gulf War; additionally, the brain bank is only for ALS, not GWI. This is a clear example of need to shift funding away from projects that do not address GWI. Modify this section of the document to add one sentence noting that funding should come from other than the VA Gulf War research budget. CSP #501B will fulfill the original intent of having a GWI brain bank.

General consensus otherwise on this section as it is written.

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1:55: 5.5 discussion on Biomarkers. (p.38-43)

General discussion on recommendations related to biomarker discovery, qualification, and application.

Discussion on goals of biomarkers. Help determine pathology, refine diagnosis. Would help for case definition, tightly focused research.

Needs prioritization matched with rationale, such as something prominent in GWI, otherwise a 10-year research goal. Currently this section appears like a wish list.

Discussion that this section is duplicative of other areas of the document.

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2:20 5.6 Discussion on Animal Models. (p.44-45).

Discussion on necessity of bulleted list on p. 45. Goal was trying to engage a researcher who might know something about this area, because we already know this is a good area to look related to GWI. Can remove ALS example and exchange it for language from 2008 RAC report. Gets back to issue of philosophical belief in investigator-initiated research. Need a plan to do this, and if RFA process doesn't work, other ways to stimulate this kind of research.

Need for a new introduction to this section on demonstrated utility of animal models. What's been accomplished, how, and why, and recommended next stages. Would be more compelling. This report could be received with more enthusiasm if it would provide a few sentences, table, etc. in each section, to do this. Need to include the data, not just the conclusions. Would encourage potential researchers to step up to the plate and join in the research effort. Would also help GWV's better understand what's happened to date and what's being proposed for new directions in GWI research.

!Suggestion from Dr. Korn: short bulleted list of research gains since beginning of GWI research should be created, add to this document.

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Blogging live from the RAC -- ct'd

To follow along, the draft plan is at: http://www.scribd.com/doc/79701467

The call-in number is toll-free 1-800-767-1750 and the access code is 82477# .

The full agenda provided to RAC members today is here: https://docs.google.com/open?id=1Sas5UyjORc9Jb0mwCQxNfOfvPT1ofYQOtA5l2OytHsHm-Ve8SrgCTbTaLLZQ.

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12:01 p.m., discussion moves to Case Definitions (starting bottom of p. 25 of the draft)

Dr. Steele noted that research to establish a case definition for GWI. Discussion of whether or not there's enough data for a case definition. IOM says it's a multi-system, multi-symptom illness, is this not a definition? Doesn't prove any information for researchers on how to define groups of veterans with these symptoms.

Research won't be effective unless there's an agreed upon phenotype, existing case definitions vary all over the place, a rigorous case definition is needed and you won't find targets, just signals, and you won't learn very much. Even if it might exclude some veterans who might.... Clinical trials have very clear requirements, including exclusionary factors. Not intended to be representative of anything, intended to reduce variables. Need to be as consistent as possible.

also include patients who are beyond that scope, ultimately objective markers will identify what GWI *is*. Argues that most need to meet Kansas criteria, but to allow some to go beyond that.

Very pleotropic phenotype. When trying to develop biomarker, you have to narrowly identify your target.

Must come up with a definition that is generally accomplished. In order to get anywhere, we have to decide what this is, it's not going to be perfect, but we need to start.

I noted that deployed and non-deployed have illness rates, but that there logically has to be something that is at the root of the higher rates. Argued for narrowness in analytical efforts, recognizing that treatments will help all.

Group recommended a process to develop a case definition. Use Kansas definition in the meantime.

Mr. Binns notes that edits have pluralized "illness" -- not just a semantic issue, notes the philosophical issue. IOM has decided this for us, it is an "illness". Question: on the basis of what? If you want to find markers, you've got to have an agreed definition for being there, doesn't pretend to identify population, first step. Change "symptomatic illnesses" back to "symptom illness". Same pattern of symptoms.

Ensuing lengthy discussion. Discussion of syndrome versus illness. Illness versus illnesses. Is this plan about GWI or about all illnesses that might be afffecting Gulf War veterans (including metabolic syndrome, cancers, etc.).

Blogging live from the RAC -- continued

To follow along, the draft plan is at: http://www.scribd.com/doc/79701467

The call-in number is toll-free 1-800-767-1750 and the access code is 82477# .

The full agenda provided to RAC members today is here: https://docs.google.com/open?id=1Sas5UyjORc9Jb0mwCQxNfOfvPT1ofYQOtA5l2OytHsHm-Ve8SrgCTbTaLLZQ.

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10:55 a.m. - meeting has reconvened after a break.

Discussion has moved Medical Surveillance and action plans.

Dr. Steele expresses concerns. Big issue is "we" still don't know rates of cancers, etc. in Gulf War veterans and that isn't being monitored adequately.

Discussion moved to areas of implementation, and that so many areas were highlighted in the document as "yellow" Dr. Steele said her working group expected that the plan was for all VA Gulf War research, not just ORD, yet only ORD and OPH (Office of Public Health) are present at today's meeting. So, how do we get all the areas implemented?

Dr. Tim O'Leary (ORD) noted that ORD doesn't have control over many of the areas addressed in the plan. Reminded us that RAC is advisory (only). Original assumption was this was an ORD plan, it's now clear this has become an all-VA plan. Noted that CofS Mr. Gingrich is very committed to this issue, ORD will make sure he and the internal VA Gulf War Task Force. Reminded that plan doesn't constitute advice until it's approved by both RAC and NRAC.

Marguerite Knox, a GWV RAC member, noted that from her perspective still in the S. Carolina National Guard, that medical data sharing between DoD and VA has not been good. VA staff echoed that concern.

I got a bit heated, directing my comments to Dr. Leary saying we Gulf War veterans are fed up with seeing a lack of energy on getting these things done and moved forward.

Mr. Binns noted that this plan, while advisory, has buy-in from ORD so it's also ORD's plan.

Dr. Kupersmith (ORD Dir.): "My interest is in getting this done." "You want something to get done, you talk with the people responsible for getting them done and work with them." Said RAC and NRAC cancertainly emphasize the importance of particular areas and why they're important. Noted that this is a strategic plan -- the operational plan is something VA does internally. The way it gets done, a strategic plan is created and approved by the appropriate entities with buy in from those who will be implementing it. Those who will be implementing it then create the operational plan. Operational plan is implemented with performance measures, which are then graded.

Dr. Schneidermann, (OPH), survey is the third time collecting data with this cohort of 30,000 -- half each deployed and non-deployed. Discussed how to use this cohort to create a biorepository.

Dr. Laine, (new to the RAC; editor of Annals of Internal Medicine.) Strikes me: a lot of playing catch-up because of earlier poor collections of data. Missing: Changing systems not only for Gulf War veterans but for the future. Set up data collection prospectively, not only to better understand what happened here, but also to set up systems for doing this better in the future.

Dr. Kupersmith: Relationship with DoD is much better in recent years.

No major changes made to this section.

Blogging from the RAC --- updates as they're happening.

DThis morning's joint RAC-NRAC-GWSC meetings kicked off with opening comments.

Chairman Binns opened with a welcome, and showing PowerPoint slides from the April 2009 IOM report showing Gulf War Illness as a unique diagnosis affecting 250,000 veterans of the 1991 Gulf War.

Dr. Buja, NRAC chair and chair of this meeting, then talked about the structure of the current document and his ideas on how best to proceed today.

Dr. Joel Kupersmith, VA ORD director, talked about having never seen this kind of effort before, and how relatively quickly it has gone.

Dr. Bobbie White spoke about the history of GWI science, and said from her work she sees GWI as essentially a chemically induced encephalopathy.

I spoke briefly as an ill Gulf War veteran and part of the target population, giving a history of Gulf War veteran's experiences of not having been listened to and our community's distrust, and covered the areas where this plan could be different. (Essentially, my article from a few days ago about this Strategic Plan). I tried to emphasize the need for treatments to improve GWV's health and lives, and the need for urgency in doing so.

Dr. Korn said he participated in two of the nine subcommittees, and noted that he recognizes that Gulf War veterans' illness is real, and are clearly suffering, and that he wanted everyone to know that all are very intently focused on getting this. "We want this to be fixed," he said.

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The discussion has gone to the Treatments section of the report.

Dr. Korn asked the question, Since Gulf War veterans have all of these many of these symptoms, then are they not being given treatments for these symptoms?

Dr. Sullivan said that the treatment section working group recognized that treatments have been given to Gulf War veterans, but that it has really to date been about treating symptoms. "Our focus was not just on treatments and treating the symptoms, but we also tried to figure out ways to get at the mechanism" [underlying GWI].

Dr. Golomb said that Gulf War veterans are more likely to have adverse reaction to multiple drug therapy.

Dr. Korn questioned why VA isn't already doing a coordinating center to test these out, and why this isn't the mechanism: to develop a well controlled coordination of trying out therapies within the VA system and then gathering data from that. (essentially to know what works and what doesn't).

Dr. Barlow said that everything is essentially "anecdotal" to this point, and we need to know whether GW veterans are collectively more likely to know whether polytherapy is a problem and may be making veterans worse. Well controlled studies of existing therapies and whether they're beneficial.

Dr. Steele said the problem is no data. "People are being treated every day, we don't know where it's leading them." [[My clarification: the issue is how I summarized Dr. Steele's statement. Here'a better attempt: Science works by collaboration. Scientists have their study results published in journals that are peer reviewed, thereby opening them up for scrutiny and others to further advance the scientist. All of us individual veterans who have tried medications that worked or didn't work, or who discovered (the hard way) that multi-pharmaco-therapy makes us worse, are all what science calls "anecdotal" -- no control group, no placebos, no objective bio/chemical measurements -- those things would constitute "data" that the body of science could then use to further advance the general scientific knowlege of what works and what doesn't, and most importantly, "WHY". Hope that helps clarify. Any misunderstanding about what this means is my fault for not writing it better, not Dr. Steele's fault -- she's as "in our camp" as you can get, and one of our heroes, in my opinion]

Dr. Sullivan: this is something that can be done NOW.

There's now discussion about whether a national center for GWI would be helpful. Some arguing in favor.

Dr. Steele said there's just no data, that individual patients have been given treatments, but data on its effectiveness has not been tried.

Clarification between Dr. Korn and Dr. Steele about treatments being studied: "Why for the first time, 16 years down the road, have we still not tried this?" asked Dr. Korn.

Discussion now on why the effectiveness of treatments has not yet been studied and measured.

Stigmatization of GWI early on. VA only funds VA investigators. Focus has been on individual researchers, not collaborative inter-institutional efforts. Not a lot of response to VA internal RFA's, so we need to find a way to get the message out broader, like we are with this plan, and to ensure there's enough partnering with the outside the VA research community on these efforts.

Dr. Melling said there's a philosophical difference between investigator-initiated research and directed research. Arguing for the directed philosophy, we wouldn't have succeeded with the Manhattan Project if we hadn't directed all those researchers to throw in their efforts.

Coordinating committee did attempt some prioritization among the 10 elements. #4 (smoking cessation), #5 (complementary medicine), #6 (cognitive rehab) would not be prioritized.

Discussion on the relative importance of these. Dr. Buja noted that the committee found that many of these things are "fantastically important" but they questioned whether they should be prioritized from very limited amounts of money for Gulf War veteran health.

Vic K. (VA ORD, our new scientific lead on GWI) -- VA has been primarily investigator-driven.

Consensus agreement that there should be prioritization of funding of treatments.

Mr. Binns -- VA should shift its top-down directed efforts at treatments.

Saturday, January 28, 2012

Gulf War Illness -- A New Plan Takes Shape

Written by Anthony Hardie

(Editor's note: A link to the current draft of the plan is included below)

(91outcomes.com) - As news of the development of a new plan to direct and guide VA's medical research related to Gulf War veterans has come to the public's attention, many questions have also emerged. Why is it needed? How is this different from past VA "efforts"? Why now?

More than twenty years after the 1991 Gulf War, the facts are stark: The IOM estimates 250,000 of us -- about one in every three -- are actively suffering from otherwise unexplained chronic multi-symptom illness scientifically and statistically determined to be associated with our Gulf War service.

For our medical clinician and researcher allies and us, we call it Gulf War Illness or Gulf War Syndrome. There is no cure, and with one limited exception there are no proven effective treatments.

Overcoming the Past

A key question for many in our disabled Gulf War veteran community has been related to deep and justified distrust rooted in the past, where the bulk federal government efforts seemed to us to be aimed more at proving there was nothing wrong with us than at helping us overcome -- ar adapt to the "new normal" of living with -- our service-caused disabilities.

That's not to say there hasn't been any effort towards helping Gulf War veterans. In fact, more than $300 million has been spent by the federal government on a huge portfolio of scientific research that DoD and VA call Gulf War research.

However, a closer look shows that much of that research has been expended on trying to prove stress was all that was wrong with us. It wasn't. Much was expended on trying to show what was wrong with us was the same as after every war. It wasn't.

As an example, one "research" study "proving" this that was touted by the DoD for years but upon closer look was "researched" not by a medical doctor or neurological scientist, but by an English professor examining war novels instead of uniquely ill patients. (For a better analogy, she should have been analyzing Plato's allegory of the cave, with researchers like her only interpreting ill Gulf War veterans' shadows, as if they were at all descriptive of ill Gulf War veterans' reality.)

Some of that research has been on Depleted Uranium, a deep source of concern among ill Gulf War and other veterans. But on closer look, it's another matter altogether. For Gulf War and other veterans, our most probable exposures to DU were inhaled or ingested microfine DU particulate matter in DU-bombed military vehicles and buildings. Instead, the "Gulf War research" portfolio includes a raft of studies on DU pellets. Embedded in rodents. That has found little to nothing. To put it plainly, that's like going into a room with your eyes closed, sticking your head in a corner, opening your eyes, and then announcing that the room is empty, when in actuality of course you haven't even begun to look around.

To make matters worse, in determining whether or not it was going to assist these seriously disabled veterans with disability benefits, VA in the past relied heavily if not exclusively on Institute of Medicine reports analyzing this body of flawed-from-the-get-go research the overlooked the realities of Gulf War veterans' chronic multi-symptom illnesses and found little to no explanation for what was wrong. To many in the ill Gulf War veteran community, it didn't seem to matter that it was clear they were ill, disabled, and suffering -- the federal government seemed to be intently focused in the corner of the room discounting them, their illnesses, and their inability to function the way they always had before.

So perhaps some who might be new to getting to know our community will forgive those who have grown cynical of these efforts, and distrustful of those who tout them as some sort of achievement. Perhaps in this context outsiders might understand the anger, frustration, and outrage that still overcomes some in our community all of the time and nearly all in our community some of the time.

And for those of us who remain active in our community, the stories we hear every day... every hour... are heartbreaking. We hear from our suffering fellow Gulf War veterans, seeking comfort from their fellow veterans in knowing they're not alone in their suffering... We hear from terrified Gulf War veterans' spouses desperately grasping for answers and help in Facebook chat groups instead of VA doctors' offices as they see their Gulf War veteran slipping further and further downwards...

And so, for all that spending and all that work, there is no cure, and with one limited exception, there are no proven effective treatments.

In short, any of us should be able to see distrust for a new report when the seemingly endless parade of commissions, committees, task forces, and working groups that has not yet brought tangible change to our community.

20 Years Later, the Beginnings of a Plan

During Research Advisory Committee on Gulf War Veterans' Illnesses (RAC-GWVI) meetings in Washington, DC on Feb. 28 and Mar. 1, 2011 much of the focus was on recognizing the 20th anniversary of the 1991 Gulf War and looking forward to all that still needed to be done.

Perhaps it was this retrospection that brought to the forefront pent-up frustration related to the lack of a coherent VA strategy to guide Gulf War Illness research. Out in the open during these RAC discussions, the frustration bubbled up and boiled over, and so the process began.

VA's initial plan fit neatly on less than two typewritten pages.

Long and Short of the Process

The development of a true strategic plan for Gulf War Research has involved a mind-numbing array of committees, VA offices, meetings, teleconferences, drafts, and discussion -- usually collaborative, sometimes heated.

This collaboration over the last several months has included the the RAC-GWVI, the VA Gulf War Steering Committee (GWSC) -- which is composed of members of the RAC and (National Research Advisory Council), and VA staff. t

Following extensive work by the still-new Gulf War Steering Committee and aided by VA staff, a draft strategic plan had already reached 42 pages by the time it was discussed at the RAC's next meeting in late June 2011.

Over the course of various meetings, the GWSC, RAC, GWSC, and VA staff worked steadily on the plan during the Summer, Fall and Winter, including through nine Gulf War Research Strategic Plan Action Committees (see below). The committees were aided in their work by the augmentation of VA and non-VA researchers.

Next steps for the current draft of the plan include a joint RAC-NRAC-GWSC working session on the Gulf War Research Strategic Plan on Jan. 31 in Washington, DC. This will be the first time the full NRAC has been involved.

Given its Congressionally mandated primacy over the federal government's Gulf War research efforts, it seems likely the RAC will continue to remain heavily engaged in completing the plan and monitoring its implementation.

The Way Forward

The military likes to frequently use the phrase, "the way forward," and it seems fitting to use in describing this plan.

As an ill Gulf War veteran myself with a firsthand view of the justifiable cynicism and distrust of the ill Gulf War veteran community, I believe this Gulf War Research Strategic Plan could represent a way forward from the culmination of more than 20 years of pain and suffering by a quarter of a million veterans, most of whom were very young when their suffering began, and who to date remain feeling abandoned by a system that appears to them to be more interested in counting them and their symptoms and their disproportionately growing numbers of diagnosed diseases than in helping them get better or adapt to their life as a seriously disabled veteran.

I believe this plan could be different from past efforts for several reasons:

It could be different because of its overarching goals. In the past, some efforts have been aimed at proving Gulf War Illness is real, a necessary stepping stone paving the way to this newest effort. Participants in this planning process have fought hard to keep one thing first and foremost in this plan: this plan must remain tightly focused on improving the health and lives of ill Gulf War veterans. Ill Gulf War veterans' sense of urgency must remain reflected in the final plan.

It could be different because of the process. To date, this plan has not been a top down-product written by one person or by a small, insulated group from a single government office or committee. To date, the plan has been the work of dozens of people who have worked through a variety of offices, committees, and subcommittees in a sifting and winnowing process. Continuing this inclusive, consensus-driven process is key to ultimate success.

It could be different it it contains tangible outcomes and metrics to measure success. To be successful, this plan must retain tangible action items, measurable milestones of progress, and priorities for what kinds of research should be funded earlier rather than later and from research funds designated as "Gulf War" or other VA research. If these are not present in the final document, then this plan may very well become just another book to file in the Gulf War bookshelf, containing huge amounts of knowledge but having little real impact in improving the health and day-to-day lives of ill Gulf War veterans. If this plan is accepted and implemented with tangible action items, measurable milestones, and priorities -- and VA wholly commits to it -- then the quarter-million Gulf War veterans whose lives it is intended to improve will finally see a VA-led research effort aimed at developing treatments at improving their health and lives. With regards to VA research, this would be a very different direction from even the most recent past.

It's been different to date because advisors and implementers have been integrated throughout its development. It's not advisory, unlike so many well-intentioned Gulf War health related reports that are far too easy for implementers to ignore. Yet, it involved advisors, unlike most Gulf War related plans that may have been well intentioned but have far too often missed the mark entirely on the realities of Gulf War health and the needs of those afflicted. For this process, advisors included some of the best clinicians and researchers in the Gulf War Illness field, and alongside them the full and open input of representative ill Gulf War veterans. Implementers included key staff from across the relevant VA offices who will ultimately be responsible for implementing the plan's specific action items. Advisors also included the oversight bodies whose role includes "watchdog" oversight functions to help ensure action items are accomplished within designated timeframes. While perhaps not perfect, this uniquely integrating aspect has so far helped educate and gain buy-in from all sides and increased the likelihood for a consensus of support for its final version.

It's different when there are few surprises. To maintain buy-in, those investing their time, energy, and effort into creating this plan must retain faith that staff writing and editing the document do so fully in keeping with what was agreed upon. To the largest extent, that has happened successfully to date. Notable exceptions are sure to be the cornerstone of debate in the near future. The discovery of unexpected and unapproved substantive changes in "next" drafts creates distrust, at best, and can shut down the process entirely at worst because all sides involved always retain a "nuclear" trump card -- they can always walk away and "blow up" the plan if they deeply disagree with it. Most stay at the table because they believe that is where the real decisions are being made and where they are able to work collaboratively toward a consensus product that is both visionary and viable, that is needs-meeting but also genuinely able to be achieved, and where all parties needs are respected, most especially the targeted population of ill Gulf War veterans.

All of these positives show that it's possible to have a solid plan that would be the strongest effort to date to help the quarter-million Gulf War veterans still suffering from IOM-associated chronic multi-symptom illness.

Without tangible metrics and milestones, this document's potential will likely revert from a plan to achieve what will be, to a mere vision for what could be -- very different indeed.

Without prioritization of the many proposed action items, everything becomes a priority. As a very wise person once told me, "If everything is a priority, then nothing is a priority."

Finally, this plan has to date been aimed squarely at improving the health and lives of the quarter-million Gulf War veterans suffering from a condition now accepted by the Institute of Medicine as a diagnostic entity. We as a nation must aid these quarter-million veterans suffering from Gulf War Illness. The urgency for finalizing and implementing such a plan has only increased since this process first began nearly one year ago.

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The Draft Plan - "Gulf War Research Strategic Plan"

RECOGNIZING THE PLAN IS LIKELY TO HAVE SUBSTANTIAL EDITS MADE ON JAN. 31, the current draft plan (as of Jan. 23, 2012) is available at:

http://www.scribd.com/doc/79701467

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ADDITIONAL BACKGROUND: A WHO'S WHO

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RAC-GWVI

The RAC was created by an Act of Congress, the Persian Gulf War Veterans Act of 1998, as the result of intense advocacy by the National Gulf War Resource Center and other veterans advocates. Its members are appointed by the VA Secretary from among the general public and mandatorily include Gulf War researchers and Gulf War veterans.

The mission of the Committee is to make recommendations to the Secretary of Veterans Affairs on government research relating to the health consequences of military service in the Southwest Asia theater of operations during the Persian Gulf War.

According to its charter, the guiding principle for the work of the Committee shall be the premise that the fundamental goal of Gulf War-related government research is to improve the health of ill Gulf War veterans. Research priorities will be judged against this standard.

NRAC

According to its charter, the VA Secretary's National Research Advisory Council (NRAC) advises the Secretary and the Under Secretary for Health (USH) and makes recommendations on the nature and scope of research and development sponsored and/or conducted by the Veterans Health Administration (VHA) to include:

(1) the policies and projects of the Office of Research and Development (ORD);
(2) the focus of research on the high priority health care needs of Veterans;
(3) the balance of basic, applied, and outcomes research;
(4) the scientific merit review process;
(5) the appropriate mechanisms by which ORD can leverage its resources to enhance the research financial base;
(6) the rapid response to changing health care needs, while maintaining the stability of the
research infrastructure; and
(7) the protection of human subjects of research.

According to its charter:

"The [NRAC] advises the Secretary and the USH on all matters related to the research and development program, and conducts analyses and develops reports or other materials as necessary. In order to avoid duplication of effort, the Council is encouraged to review deliberations of other committees or entities, and may incorporate or otherwise use the results of deliberations of such entities. As a part of its function, the Council may accept for consideration suggestions for research and development issues from Congress, VA and non-VA scientists, Veterans and their representatives, and the general public."

GWSC

The Gulf War Steering Committee (GWSC) is composed of four members of the RAC-GWVI and five from the NRAC. One RAC appointee is a Gulf War veteran.

ORD Gulf War Research Strategic Plan Action Committees ("Nine Committees")

1. Subcomittee for Review and Revision

James Binns (RAC-GWVI)

William Goldberg – convener (VA ORD)

Anthony Hardie (GWSC; RAC-GWVI)

Alex Ommaya (VA ORD)

2. Databases/Medical Surveillance Working Group

Niloo Afari (UC-SanDiego)

Edward Boyko (VA Seattle)

David Christiani (Harvard U; GWSC)

Steven Coughlin (VA OPH)

Diane Dannenfeldt (VA Chicago)

Erin Dursa (VA OPH)

Anthony Hardie (GWSC; RAC-GWVI)

Rebecca McNeil (VA Durham)

Michael Peterson (VA OPH)

Domenic Reda - convener (VA Chicago)

Joe Salvatore (VA)

Lea Steele (Baylor U; RAC-GWVI)

3. Gulf War Case Definitions Working Group

David Atkins (VA ORD)

Victor Kalasinsky (VA ORD)

Robert Kelch (U Mich; GWSC; NRAC)

David Korn (Harvard U; NRAC)

Gudrun Lange (VA NJ)

Lea Steele - convener (Baylor U; RAC-GWVI)

4. Genetics/Genomics Working Group

Carrolee Barlow (RAC-GWVI)

Floyd Bloom (Scripps; RAC-GWVI)

Tilo Grosser – convener (U Penn; GWSC)

Henry Heng (Wayne State U)

Catherine McCarty (Essentia Inst Rural Health)

Sumitra Muralidhar (VA ORD)

Steven Schutzer (UMDNJ)

5. Biomarkers Working Group

Fiona Crawford (Roskamp Institute)

Tilo Grosser (U Penn; GWSC)

Jeffrey Mason (VA DC)

James O’Callaghan (CDC; GWSC; RAC-GWVI)

Kimberlee Potter (VA ORD)

Kimberly Sullivan – convener (Boston U; RAC-GWVI)

6. Animal Models

Carrolee Barlow (RAC-GWVI)

Loren Koller (GWSC)

David Korn (Harvard U; NRAC)

Audrey Kusiak (VA ORD)

James O’Callaghan – convener (CDC; GWSC; RAC-GWV)

Ashok Shetty (VA Texas)

7. Symptomatic and Specific Treatments

William Goldberg (VA ORD)

Julia Golier (VA NY)

David Kearney (VA Seattle)

Robert Kelch – convener (U Mich; GWSC; NRAC)

Gudrun Lange (VA NJ)

Kimberly Sullivan (Boston U; RAC-GWVI)

8. Coordination/Communication between Partners and Researchers

Christine Amereihn (VA ORD OPA)

Victoria Cassano (VA)

Gina Clemons (VA ORD OPA)

Melissa Forsythe (CDMRP)

Connie Raab (VA OPH OPA)

Richard Wenzel (Va Commonwealth U; GWSC; NRAC)

Roberta White – convener (Boston U; GWSC; RAC-GWVI)

9. Translation of Research into Practice

Joseph Francis (VA)

Margaret Cary (VA)

Robert Jaeger (VA ORD)

Brian Mittman (VA LosAngeles)

Matthew Reinhard (VA DC)

Adam Such (RAC-GWVI)

Richard Wenzel - convener (Va Commonwealth U; GWSC; NRAC)

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Coordinating Committee

James Binns (RAC-GWVI)

Maximilian Buja – convener (U Texas Houston; GWSC)

Robert Jaeger (VA ORD)

Victor Kalasinsky (VA ORD)

Alex Ommaya (VA ORD)

Adam Such (RAC-GWVI)

Roberta White (Boston U; GWSC; RAC-GWVI)

Thursday, January 26, 2012

Chicagoland Gulf War Veteran Dead in Apparent Murder-Suicide

SOURCE: Chicago Tribune, http://www.chicagotribune.com/news/local/ct-met-arlington-heights-murder-suicide-20120126,0,7105511.story

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Arlington Heights man and wife dead in apparent murder-suicide

January 26, 2012

An Arlington Heights man and his wife were found dead of gunshot wounds Wednesday morning in an apparent murder-suicide.

Police said they discovered the bodies of Angelita James, 56, and her husband, Roger James, 48, of the 900 block of East Shady Way, after her son called to report she had not shown up for work and couldn't be reached.

The Cook County medical examiner's office said it appeared Angelita James had been shot in the face and that her husband had died of a self-inflicted wound.

Roger James was a Persian Gulf War veteran and commander of the Des PlainesAmerican Legion Post 36 who helped with many of the group's charity efforts, said Phil Campbell, a past commander.

But Campbell said his friend's typically outgoing and friendly personality had changed in recent months. He'd become moody, Campbell said, and would engage in unusual behavior such as calling friends in the middle of the night.

Tuesday, January 24, 2012

Treatment-Focused Gulf War Research Strategic Plan Set to Advance Next Week

Research Presentations include Neurological Abnormalities in ill Gulf War Veterans

RAC will Meet in Joint Session with NRAC, GWSC to Work Toward Finalizing Plan

Written by Anthony Hardie, 91outcomes.com

(91outcomes.com) - The U.S. Department of Veterans (VA) Affairs Research Advisory Committee on Gulf War Veterans Illnesses (RAC-GWVI) will hold its next meetings on Tues., Jan. 31 and Weds., Feb. 1, 2012 in Washington, DC.

On the first of its two days of meetings, the RAC will meet in joint session with the VA National Research Advisory Committee (NRAC) and the VA Gulf War Steering Committee (GWSC) to jointly work on the final stages of a new strategic plan for VA medical research. Discussion will be led by Dr. Max Buja, Chair of the NRAC and immediate past chair of the GWSC.

The plan, called "long overdue" by some RAC members, is expected to be focused squarely on improving the health and lives of the roughly one-third of veterans of the 1991 Gulf War who continue to suffer from otherwise unexplained chronic multi-symptom illness (popularly called “Gulf War Illness” or “Gulf War Syndrome”) more than 20 years after their wartime service.

On the second day, the RAC’s agenda includes additional areas of action for this year.

In addition to these important RAC-initiated efforts, there will be four important presentations related to Gulf War research.

On the first day of meetings, Dr. Victor Kalasinsky is scheduled to provide an update on VA’s Gulf War related research funding. Dr. Kalasinsky is the VA’s point person on Gulf War research, filling the position newly created by VA at the RAC’s strong urging. The RAC has been highly critical of VA’s approach to Gulf War research, and this is likely to be part of the discussion.

On the second day of meetings, presentations will include an update by Dr. Mian Li on research undertaken by the VA’s WRIISCs (War Related Illness and Injury Study Centers). Dr. Julia Golier is scheduled to present her findings related to brain chemical issues in Gulf War veterans, in particular her hypothalamic-pituitary-adrenal (HPA) axis findings. The panel will also hear from Dr. James Baraniuk regarding his work with cerebrospinal fluid and proteomic analyses and subtypes among Gulf War veterans with chronic multi-symptom illness.

Dr. Li is a neurologist at the Washington, DC WRIISC, where he has examined many ill Gulf War veterans, and a clinical Associate Professor of Neurology at the George Washington University, also in Washington, DC. Dr. Golier is a clinician and researcher with current appointments at the James J. Peters Bronx VAMC and the Mount Sinai Hospital in New York. She has previously presented earlier research findings before the RAC showing differences in brain chemicals in 1991 Gulf War veterans with PTSD when compared to veterans with PTSD from other wars. Dr. Baraniuk is a clinician at the Georgetown University Medical Center and a researcher at Georgetown University in Washington, DC with multiple ongoing studies related to Gulf War veterans.

Both Dr. Golier and Dr. Baraniuk have current studies funded by the Congressionally Directed Medical Research Program (CDMRP) on Gulf War Illness (GWI) and are featured in the CDRMP’s current GWI program overview booklet. One of Dr. Golier’s CDMRP-funded studies has also been highlighted in a CDMRP video.

Public Participation

The meetings begin at 8:30 a.m. on Tues., Jan. 30, and at 8:15 a.m. on Weds., Feb. 1. Both days' meetings will be preceded by an open coffee/tea pastries at 8:00 a.m. for all attendee, which is an excellent opportunity to talk informally with committee members, presenters, and other attendees. There are no formal arrangements for lunch on Jan. 30, potentially creating an additional opportunity to have similar discussions over lunch.

Two public comment periods are available, at 3:45 p.m. on the first day of meetings, and at 11:45 a.m. on the second. Times are approximate and could be sooner or later depending upon the duration of earlier agenda items.

For those unable to attend in person, you can listen in whole or part via teleconference. The call-in number is toll-free 1-800-767-1750 and the access code is 82477# .

Written comments for the committee can be submitted to rac@bu.edu.

About the RAC

The Research Advisory Committee on Gulf War Veterans' Illnesses (RAC-GWVI) was created by Congress in 1998 through the Persian Gulf War Veterans Act of 1998, and first appointed by Secretary of Veterans Affairs Anthony J. Principi in January, 2002.

The mission of the Committee is to make recommendations to the Secretary of Veterans Affairs on government research relating to the health consequences of military service in the Southwest Asia theater of operations during the Persian Gulf War.

If you’re Attending

In person: Lafayette Building, 811 Vermont Ave., NW, Room 1143, Washington, DC. [ Map ] This is directly across the street from VA's central office building.

Note that like most federal office buildings, you must first clear security in order to enter. Arrive early and bring a government-issued photo ID. The McPherson Square Metro Station (Orange/Blue Lines) is 1/2 block to the northwest (use the Vermont Ave. exit)

Via Teleconference: The call-in number is toll-free 1-800-767-1750 and the access code is 82477# .

Monday, January 23, 2012

Dallas County Medical Society Honors GWI Researcher Dr. Robert Haley with Leadership Award

Dallas County Medical Society installs Dallas cardiologist as president

Dallas—January 23, 2012

The Dallas County Medical Society installed Richard W. Snyder II, MD, as its 129th president on Thursday, Jan. 19, at the Park City Club. Two awards were presented: the Charles Max Cole, MD, Leadership Award to Robert W. Haley, MD, and the Millard J. and Robert L. Heath Award to Congressman Pete Sessions.

About Dr. Haley's award:

Haley was honored with the Charles Max Cole, MD, Leadership Award, which recognizes a DCMS member for outstanding service to the profession of medicine and to the community. Haley is a DCMS past president. He is a professor of internal medicine and director of the Division of Epidemiology in the Internal Medicine Department at the University of Texas Southwestern Medical Center at Dallas. Haley has conducted extensive research on the epidemiology and prevention of hospital-acquired (nosocomial) infections to improve the quality of hospital care and, more recently, the Gulf War syndrome. He holds the US Armed Forces Veterans Distinguished Chair for Medical Research Honoring America’s Gulf War Veterans. He is a longtime Dallas resident, having graduated from Sunset High School and Southern Methodist University.

About the others:

Snyder is a cardiologist at Medical City Dallas Hospital. He prides himself on being a preventive specialist, emphasizing the prevention of cardiovascular disease primarily through risk factor modification, especially diet, exercise and weight loss. After graduating from the University of Notre Dame, he completed medical school at the University of Texas Southwestern Medical School, with a residency in internal medicine and fellowship in cardiovascular disease. Snyder grew up in Dallas and attended Jesuit College Preparatory School. He is married to Shelley Hall, MD, a cardiologist at Baylor University Medical Center in Dallas.

Congressman Sessions was presented the Millard J. and Robert L. Heath Award, which recognizes a layperson who has provided outstanding leadership and service to medicine and to the community. Congressman Sessions was selected based on his work with Dallas County physicians to improve health care and the healthcare system.

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Source: http://frontburner.dmagazine.com/2012/01/23/d-magazine-cover-model-rick-snyder-becomes-president-of-dallas-county-medical-society/

Monday, January 9, 2012

Boston CDMRP Study Seeking GWI Patients for Study

Are you a veteran of the Gulf War (1990-1991)?

We seek men and women who served in the Gulf region during the first Gulf War (1990 -1991) for a research study.

Gulf War veterans with or without Gulf War Illness are eligible.

This involves one visit to Massachusetts General Hospital during which various tests for nerve injury will be performed, including removal of a small skin-biopsy from your lower leg under local anesthesia.

Payment for participation is offered.

For more information, please contact NerveUnit@partners.org or (617) 726-9391.

IRB#99-9042

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Gulf War Illness Small Fiber Polyneuropathy Study (Boston)

Click on this link to find out about Massachusetts General Hospital's Gulf War Illness Study:

http://dl.dropbox.com/u/47719329/GulfWarBrochure2012.pdf

(Please note: This Adobe Acrobat .pdf file may take a while to download.)

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Patient Information Sheet
DOD Sponsorship and Access to Research Records
Protocol # 1999-P-009042/123; MGH Legacy # 98-7346; HRPO Log # A-16118

Study Title: Undiagnosed Small Fiber Polyneuropathy: Is It a Component of Gulf War Illness?

Investigator: Anne Louise Oaklander, MD, PhD

Research Site: Massachusetts General Hospital

The purpose of this information sheet is to provide additional information to the Research Consent Form(s) you are being asked to read and sign before starting this study.

We want you to know that this specific study is being funded by the Department of Defense (DOD) under a grant. Representatives of the DOD, specifically the U.S. Army Medical Research and Materiel Command (USAMRMC), may review your research records as part of their responsibility to protect human subjects in research. You have the right to decline participation in this study based on the source of the funding.

If you have any further questions about the DOD funding or the USAMRMC access to research records, please contact the Office of Research Protections, Human Research Protection Office in Fort Detrick, Maryland at 301-619-2165. For any other questions related to the study, please contact Dr. Oaklander at 617-726-9391.