Op-Ed: Advice for VA and Gulf War Veterans

Editor’s Note:  Jim Bunker served during the 1991 Gulf War under the command of John Gingrich, who is today the VA Secretary Eric Shinseki’s Chief of Staff.  Gingrich also heads the VA’s internal Task Force on Gulf War Veterans’ Illnesses.

Public comments on the Task Force Report are due Monday, May 3, 2010, and can be submitted online including uploading a file.

 

Written by James Bunker

April 30, 2010 (TruthOut) - I have been working with veterans all over this country of ours in their fight with the Department of Veterans Affairs (VA). The one thing that stands out is this: The VA has many regional offices throughout the country, and few rate veterans' disability claims in the same way.

It does not matter if it is a claim for Post Traumatic Stress Disorder (PTSD) or Gulf War Illnesses (GWI), or something else. There seems to be little uniformity or standardization in the methods used to decide these claims from one region to another. This is not right!

When all factors are identical in two different claims, a veteran in one state will be approved for a 50 percent disability and the veteran in a different state is told that the disability is not related to his or her service. Where are the standards?

Did these Rating Specialists (RS) not all get the same training? They all have to follow the same law - CFR 38. The VA has published a book that all of the RS's are supposed to use in adjudicating claims. It is called the M21-1R. Yet despite these clear-cut instructions, we see vast disparities from one VA region to another.

The problem, as I see it, is that RS's are poorly trained and overworked. Their daunting workload quite obviously has prevented many of them from remaining current on new protocols and training letters. They have to get through so many claims in a day and are not given the time for reading training letters or new instructions from headquarters.

Perhaps it's time for the VA to conduct a "Training Stand-Down," much like the military conducts periodic Maintenance and Safety Stand-Downs in order to address ongoing organizational and safety deficiencies.

The VA can add all the new RS's it wants, but if these people are not properly trained in claims adjudication policies they will continue to make the same mistakes that have created a huge backlog of appeals before the Board of Veterans Appeals in Washington, DC.

The VA needs to do a better job of training the workers it has now. Then, as new RS's are hired, they can get help from those who know the right methods to use in deciding a claim.

The cases I get most upset about are the Gulf War Veterans (GWV) claims. I have been focusing on these types of claims for many years.

These should be some of the easiest to work on given the clear-cut language contained in the laws concerning "presumptive" conditions for Persian Gulf War Veterans. Yet I see so many that are denied.

A lot of the denials include the same language - the RS denying the claim because there is no proof that the medical problem started in the service. Had the RS read the law, he or she would have noticed that GWV's have until December 31, 2011, for the signs or symptoms to develop. In other words, the symptoms do not have to have started while the veteran was on active duty.

It is clear that far too many RS's do not understand what "presumptive" is all about when it comes to adjudicating claims by GWV's. Perhaps we need to give them a checklist.

In all claims there are two parts. The first is the hardest, and that is proving that the veteran's illness is due to his or her service. The second part is determining to what degree the veteran is disabled, expressed by a percentage, 0 percent to 100 percent.

Here is my proposed RS checklist for GWI:

1.  Was the veteran present in the theater of operations during the timeframe established for the Persian Gulf War? Yes or No.

2. Does the veteran have an undiagnosed illness or one that is a medically unexplained chronic multi-symptom illness defined by a cluster of signs and symptoms or any diagnosed illness as outlined in VA regulations to a degree that warrants a presumption of service connection? Yes or No.

3.  If the RS marks Yes to both of these questions, then the veteran's disability is to be considered service-connected (SC) under Section 1117 - Undiagnosed Illnesses due to service in Southwest Asia. All that remains is a determination as to the percentage of disability.

The last part of my complaint about getting GWV's their service-connected disability claims is the VA's outdated computer check-in system. A GWV may have four to six problems but is able to have only one listed for his or her check-in. When the RS looks over the veteran's file he/she does not see all of the problems that the veteran has because the VA's computer system cannot handle it. This will affect the claim in terms of the percentage of disability awarded.

The veteran must ensure that the examining physician at the VA adds all complaints to the comment area. If the physician refuses to do so, the veteran should go to the VA's ER for the other problems. Also, have someone keep track of when you are ill and how bad it gets.

For some of us, mostly men, admitting we are sick can be problematic. The common thing for us veterans is to "tough it out" and downplay how bad it really is. Veterans need to tell their doctor the truth about how bad it hurts and how they have a hard time working. Be truthful at all times.

The last thing I would like to talk about is Veterans Service Officers (VSO's). There are some good ones and some bad ones. A veteran should not pay too much attention to who the VSO works for (DAV, American Legion, VFW, etc.) because it does not matter. The important thing is how well the individual VSO is versed in the laws concerning PGW veterans.

Veterans need to talk to the other veterans in their area. Having a good VSO involved with the claim will make a lot of difference in the outcome.

Finally if the veteran has a scar, and the VSO wants to file it under section 1117, the veteran should get a new VSO. Scars should never be filed as an undiagnosed illness. There is a nexus for the scar to your service. When your VSO files it as an undiagnosed illness he is causing a delay in getting the veteran's claim approved.

James A. Bunker served in the US Army from 1978 to 1992 and was medically discharged due to illnesses sustained in the Persian Gulf during Operation Desert Storm. He founded the Veterans Information Network (VIN) in 1993, which successfully lobbied for formation of the Persian Gulf Health Initiative study and advisory board. He has testified several times before Congress on Gulf War Illnesses.

DoD FY2010 Gulf War Illness Research Program Funding Opportunities: $8M

The U.S. Department of Defense Fiscal Year 2010 Appropriation included $8 million for the Gulf War Illness Research Program (GWIRP) of the Congressionally Directed Medical Research Programs (CDMRP).

The GWIRP has released the following four program announcements planned for Fiscal Year 2010:

• Clinical Trial Award
• Innovative Treatment Evaluation Award
• Consortium Development Award
• Investigator-Initiated Research Award
  

Full Program Announcements, Application Instructions and deadlines are available on the CDMRP website: http://cdmrp.army.mil/funding/gwirp.htm .

The Synopsis Table with deadlines is also on the website: http://cdmrp.army.mil/funding/pdf/10gwirpreftable.pdf.

DoD Fiscal Year 2010 Gulf War Illness Research Program:

The FY2010 Gulf War Illness Research Program (GWIRP) challenges the scientific community to design high-impact research that will improve the health and lives of veterans who have Gulf War Illness (GWI). GWI is characterized by multiple diverse symptoms that typically include chronic headache, widespread pain, cognitive difficulties, debilitating fatigue, gastrointestinal problems, respiratory symptoms, and other abnormalities that are not explained by established medical diagnoses or standard laboratory tests.

The GWIRP focuses its funding on innovative projects that have the potential to make a significant impact on GWI. These may take the form of identification of objective indicators of pathology that distinguish ill from healthy veterans, or studies to understand the underlying pathobiology of GWI. The GWIRP encourages risk-taking research; however, all projects must demonstrate solid judgment and sound rationale.

Please forward to bio-life, clinical, immunology, molecular, pathology, epidemiology, environmental medicine, gastroenterology, occupational medicine, pain, toxicology, virology, - experimental therapeutics, endocrinology, and pharmacology scientists at the Temple University School of Medicine interested in Gulf War Illness, Chronic Fatigue Syndrome, Chronic Multi-Symptom Illness, Fibromyalgia Syndrome. You may disseminate this information to the widest possible audience using links, list serves, funding websites, newsletters, and forwarding this e-mail.

Award Mechanism Summaries:

The FY10 GWIRP is offering two award mechanisms to evaluate potential interventions for Gulf War Illness: the Clinical Trial Award (CTA) and the Innovative Treatment Evaluation Award (ITEA).

The Clinical Trial Award is intended to support larger, more definitive (Phase II-III) clinical trials where preliminary evidence indicates the potential for substantial benefit for veterans with GWI.

In contrast, the ITEA supports the initial evaluation of a treatment or intervention in smaller, early phase or pilot clinical trials (Phase II or I/II), and does not require preliminary data.

1.  The GWIRP Clinical Trial Award mechanism is designed to support identification of effective interventions for GWI. Health outcomes of interest include effects of interventions on:

a.  Global health measures, functional status

b.  Symptom complexes (e.g., cognitive function, musculoskeletal/pain symptoms, gastrointestinal symptoms, fatigue, respiratory problems, skin abnormalities) individually and as they may interact with each other

c.  Measurable clinical outcomes, biomarkers

d.  GWI subgroups characterized by symptom or other clinical characteristics 

Additional interesting aspects of the Clinical Trial Award include:

a.  Preliminary/pre-clinical data are required indicating potential substantial benefit for veterans with GWI, but does not necessarily have to come from the GWI research field.

b.  Independent investigators at all academic levels (or equivalent) are eligible to submit proposals.

c.  Full applications will be invited based on pre-application screening.

d.  Maximum period of performance is four (4) years. Maximum allowable funding for entire period of performance is $1,500,000 in direct costs plus allowable indirect costs.

2.  The GWIRP Innovative Treatment Evaluation Award supports the initial evaluation of a treatment or intervention in early phase or pilot clinical trials (Phase II or I/II), and does not require preliminary data. The mechanism is designed to support the systematic evaluation of innovative treatment interventions not previously studied in ill Gulf War veterans, with the aim of improving their health and functional status. This award mechanism is intended to evaluate a broad scope of treatment approaches with potential for widespread, cost-effective application for GWI.

Additional interesting aspects of the Innovative Treatment Evaluation Award include:

a.  Important aspects of the ITEA award are Innovation, Preliminary Data, Study Endpoints, GWI Case Definition, GWI Patient Access, IND Applications and Initiation of Trial. Please refer to the full Program Announcement for these aspects on Page 3, http://cdmrp.army.mil/funding/archive/10gwirpitea_pa.pdf.

b.  Full applications will be invited based on pre-application screening.

c.  A study protocol will be the main body of the application.

d.  Local IRB submission or approval is not required at the time of submission to the ITEA.

e.  Independent investigators at all academic levels (or equivalent) are eligible to submit proposals.

f.  Maximum period of performance is three (3) years. Maximum allowable funding for entire period of performance is $450,000 in direct costs plus allowable indirect costs.

3.The GWIRP Consortium Development Award mechanism seeks to promote a major multi-institutional research effort conducted by leading Gulf War Illness researchers that specifically focuses on innovative approaches for:

• Identifying treatment
• Improving GWI definition and diagnostics
• Characterizing disease symptoms
• Understanding underlying pathobiology

This effort will be executed through two separate award mechanisms, the Consortium Development Award in FY10 and the Consortium Award in FY11. Proposals for the Consortium Development Award are being requested in this program announcement.

The Consortium Development Award is an infrastructure development mechanism that provides support to create a Coordinating Center and establish the necessary collaborations at potential Research Sites for the development of a multi-institutional GWI research effort.

Participants in this consortium should be scientists and/or clinicians who have made significant contributions to the field of Gulf War Illness research or who have specific expertise related to the multiple symptoms associated with GWI progression. Infrastructure development includes (but is not limited to) establishing appropriate collaborations, outlining an administrative management plan, developing research management and communication plans, and devising an intellectual property plan.

Additional interesting aspects of the Consortium Development Award include:

a.  Consortium Development Award mechanism being offered for first time in FY2010.

b.  Independent investigators at the Assistant Professor level (or equivalent) or higher are eligible to submit proposals.

c.  The Coordinating Center should have extensive experience in developing and conducting multi-institutional research projects.

d.  Maximum period of performance is one (1) year. Maximum allowable funding for entire period of performance is $200,000 in direct costs plus allowable indirect costs.

e.  The Pre-application includes a Letter of Intent and application submission through Grants.Gov.

4.  The GWIRP Investigator-Initiated Research Award mechanism supports research focusing on the complex of symptoms known as Gulf War Illness, improving its definition and diagnosis, characterizing disease symptoms, and better understanding its pathobiology. It is intended to encourage basic or clinical developmental research aimed at identification of objective measures to distinguish ill from healthy veterans (e.g., biomarkers) or elucidate potential treatment targets for GWI. Studies that characterize chronic effects of neurotoxic exposures encountered during the Gulf War (and at comparable dosage) are also acceptable. Particular areas of interest include research on objective indicators of biological processes, or abnormalities in GWI associated with:

• Central nervous system structure and function, in particular, the role of glial cells, astrocytes, and microglia in GWI symptomatology
• Central neuroinflammatory processes
• Autonomic nervous system function
• Immune parameters
• Indicators of chronic infection
• Gastrointestinal complaints/symptoms
• Genetic, genomic, proteomic, or metabolic characteristics
  

Additional interesting aspects of the Investigator-Initiated Research Award include

a.  Proposals are not required to include preliminary data, however, preliminary data may be used to support the objectives of a proposal. This data does not necessarily have to come from the GWI research fields.

b.  Investigators at all academic levels (or equivalent) are eligible to submit proposals.

c.  Full applications will be invited based on pre-application screening.

d.  Maximum period of performance is three (3) years. Maximum allowable funding for entire period of performance is $600,000 in direct costs plus allowable indirect costs.

Award Mechanism Deadlines

Required Pre-Applications are submitted through http://cdmrp.org and are due by 5:00 p.m. Eastern Time on May 14, 2010.

Invitation to Submit an Application: June 2010 (for all mechanisms with exception of Consortium Development Award which will not be screened at pre-application).

Applications are submitted through www.grants.gov and are due by 11:59 p.m. Eastern Time on August 4, 2010.

Scientists Discover Substance That Causes Pain

Finding could lead to development of non-addictive painkillers, study suggests

(HealthDay News) - The human body produces a substance similar to capsaicin -- which makes chili peppers hot -- at sites of pain, and blocking production of this substance can ease pain, a new study shows.

The findings may lead to the development of non-addictive painkillers, according to the researchers at the University of Texas Health Science Center in San Antonio.

In work with mice, the scientists found that a family of fatty acids called oxidized linoleic acid metabolites (OLAMs) play an important role in the biology of pain.

"This is a major breakthrough in understanding the mechanisms of pain and how to more effectively treat it," senior investigator Kenneth Hargreaves, chair of the Department of Endodontics in the Dental School at the UT Health Sciences Center, said in an UT news release.

"These data demonstrate, for the first time, that OLAMs constitute a new family of naturally occurring capsaicin-like agents, and may explain the role of these substances in many pain conditions. This hypothesis suggests that agents blocking either the production or action of these substances could lead to new therapies and pharmacological interventions for various inflammatory diseases and pain disorders such as arthritis, fibromyalgia and others, including pain associated with cancer."

The researchers developed two new classes of analgesic drugs that target OLAMs.

"Nearly everyone will experience persistent pain at some point in their lifetime," Dr. Hargreaves said. "Our findings are truly exciting because they will offer physicians, dentists and patients more options in prescription pain medications. In addition, they may help circumvent the problem of addiction and dependency to pain medications, and will have the potential to benefit millions of people who suffer from chronic pain every day."

The research was published April 26 in the Journal of Clinical Investigation.

More information

The U.S. National Institute of Neurological Disorders and Stroke has more about pain.

TMJ in Fibromyalgia and Chronic Fatigue Syndrome

Written by Adrienne Dellwo, About.com Guide, for About.com

(About.com) - Temporomandibular joint disorder (TMJ) causes jaw pain, and it's more common in people with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) than it is in the general population.

More than 10 million people in the United States are believed to be affected by the jaw pain TMJ, and the disorder is more common in women than in men.

What is TMJ Disorder?

The temporomandibular joints connect your jaw to your skull. They're stabilized by muscles and ligaments that open and close your mouth. Pain or tenderness in or around the joints is referred to as a TMJ disorder.

The causes of TMJ disorders still aren't well-known, but most experts agree that jaw trauma can lead to it. Other conditions associated with TMJ include:

• Anxiety
• Stress
• Rheumatoid arthritis

The pain of TMJ can range from mild to severe and treatment generally depends on the severity.

Why Do Fibromyalgia, Chronic Fatigue Syndrome and TMJ Disorder Go Together?

We don't know yet why people with FMS and ME/CFS appear to be more prone to TMJ. When TMJ occurs first, it's possible that the pain of TMJ could contribute to the development of central sensitization, which is believed to be a key component of FMS and ME/CFS. When FMS or ME/CFS happens first, TMJ may be related to lax connective tissues believed to be associated with those conditions.

Since people with FMS and ME/CFS feel pain more acutely than others, they may suffer more from disorders, such as TMJ.

Diagnosing TMJ Disorder

TMJ disorders are most often diagnosed and treated by dentists. There's no single widely accepted test for TMJ. Your dentist may check the jaw for tenderness, popping, clicking and difficulty opening and closing your mouth. Your dentist may also see how your teeth fit together by taking an x-ray and a mold of your mouth.

It's a good idea to ask your regular doctor to rule out other causes of facial pain, such as sinus headaches or earaches. Also, if you have myofascial pain syndrome (which is common in people with FMS), trigger points on the sternocleidomastoid muscles in the front of the neck can cause jaw pain. It's unknown whether these kinds of trigger points actually cause TMJ or just cause similar symptoms.

Symptoms of TMJ Disorder

TMJ symptoms, other than headaches, are quite distinct from symptoms of FMS and ME/CFS. TMJ symptoms include:

• Jaw pain
• Discomfort or difficulty chewing
• Painful clicking in the jaw
• Difficulty opening or closing the mouth
• Headaches
• Locking jaw
• Teeth that don't come together properly

Treating TMJ Disorder

In some cases, TMJ symptoms go away on their own. If you have persistent symptoms, your doctor may recommend either conservative treatments or a more aggressive approach.

Conservative TMJ treatments include:

• Stress reduction
• No gum chewing
• Avoiding wide yawning
• Ice packs
• Anti-inflammatory drugs, such as Advil (naproxen) and Motrin (ibuprofen).

More aggressive treatments include:

• Orthodontics
• Surgery

These aggressive treatments are controversial, so you may want to get a second opinion before considering them.

TMJ Treatment vs. Fibromyalgia/Chronic Fatigue Syndrome Treatment

TMJ treatments don't generally interfere with FMS or ME/CFS treatments. Ice packs, however, may be difficult for you to tolerate because of the temperature sensitivity common with FMS or ME/CFS. Also, surgery may be less attractive, because it can exacerbate FMS and ME/CFS symptoms, making recovery more difficult. Also, some experts believe that many people with ME/CFS are sensitive to certain types of anesthesia, although this has not been proven in clinical studies.

Any time you're taking medication for more than one condition, you should talk with your doctor and pharmacist about possible drug interactions.

Living With TMJ Disorder and Fibromyalgia/Chronic Fatigue Syndrome

The pain of TMJ can make your FMS or ME/CFS more difficult to manage, but treating your TMJ can keep it from worsening other symptoms.

Scientists from the National Institutes of Health are conducting a wide range of studies to better understand the pain process, including the facial pain of TMJ and what it has in common with disorders involving widespread muscle pain. This research could help us better understand TMJ and its relationship to FMS and ME/CFS, leading to better treatment as well.

_Sources:

American Dental Association. All rights reserved. "Chronic Fatigue Syndrome"

British Journal of Anaesthesia. All rights reserved. "Anaesthesia for patients with idiopathic environmental intolerance and chronic fatigue syndrome."

Lapp, Charles W., MD, Hunter-Hopkins Center. All rights reserved. "Recommendations for Persons with Chronic Fatigue Syndrome (or Fibromyalgia) Who are Anticipating Surgery"

National Institute of Dental and Craniofascial Research. "TMJ Disorders"

Fibromyalgia Symptoms are reduced by low-dose naltrexone: A pilot study

Fibromyalgia Symptoms are reduced by low-dose naltrexone: A pilot study.
Pain Medicine (2009)
Jarred W. Younger and Sean C. Mackey

What is fibromyalgia?

People with fibromyalgia complain of chronic pain in the muscles of their body. They are also often profoundly fatigued, and have difficulty sleeping well. Headaches, stomach problems, and a number of other symptoms are frequently reported. Millions of people in the United States meet the criteria for fibromyalgia, and the condition seems to affect more women than men. The disorder can be debilitating, as the pain and fatigue prevent the individual from carrying out their normal activities. There are three FDA-approved medications for fibromyalgia, but not all individuals respond well to those treatments.

What is low-dose naltrexone?

We tested a medication called low-dose naltrexone (LDN). Naltrexone is a medication that has been used for many years to treat opioid addiction. When given at a smaller dose (usually 4.5mg), the drug may help to reduce pain associated with inflammatory and autoimmune conditions, such as multiple sclerosis and Crohn’s disease. LDN is not FDA-approved for the treatment of pain, and is still experimental. LDN capsules are typically taken once per day.

What was the study?

We ran a small study to see if individuals with fibromyalgia would receive benefit from taking LDN. Ten women were enrolled in the study – all of whom met the criteria for fibromyalgia. The participants were given a handheld computer to record their pain, fatigue, and other symptoms on a daily basis. They filled out the daily report for two weeks before receiving capsules. Then they received capsules to take once daily. The participants received placebo for two weeks, and then LDN for 8 weeks. The study was single-blind, so participants did not know when they were receiving placebo or LDN. Finally, participants stopped taking the capsules and continued to fill out the daily reports for two more weeks.

Did the drug work?

We were very encouraged by the results. In six out of ten participants, LDN was significantly better than placebo at reducing fibromyalgia symptoms. LDN reduced daily pain, the highest level of pain, fatigue, and stress. Other symptoms, such as sleep problems, gastrointestinal complaints, and headaches, also seemed to be helped.

Pain Medicine (2009). Overall, self-reported, daily fibromyalgia symptoms (scale 0 – 100, with 100 being most severe symptoms). Time periods are: baseline, placebo, LDN, and washout. The data are separated into drug responders (solid line, 6 people) and drug nonresponders (broken line, 4 people). Drug responders are individuals who had at least a 30% greater reduction of symptoms during LDN versus placebo.

What were the side-effects?

We did not observe any serious side-effects during the course of the study. The most commonly reported side-effect (reported by 2 participants) was more vivid dreams. All of the participants who started the study finished the entire 14-week protocol.

Who was involved?

This study was conducted by lead investigator Jarred Younger, PhD and Sean Mackey, MD, PhD. Both investigators are in the Department of Anesthesia, Division of Pain Management at the Stanford University School of Medicine in Palo Alto, CA. The experiment was conducted at the School of Medicine. The capsules were prepared by Preuss Pharmacy in Menlo Park, CA.

How did you fund the study?

We were fortunate to have a number of donors that supported this work. Because naltrexone is a generic drug (in other words, not owned by a pharmaceutical company), it is difficult to secure funds to test the drug. We received critical financial support from a gift given by Jim and Connie Binns. We also received financial and logistical support from the American Fibromyalgia Syndrome Association (AFSA), a not-for-profit organization that specializes in funding studies of fibromyalgia treatments. The Oxnard Foundation provided additional support for the study.

We are currently seeking additional funding to support our continued investigation into the efficacy of low-dose naltrexone for fibromyalgia and other conditions. If you are interested in supporting our research please contact us at snapl@stanford.edu

Are there any warnings?

We recognize that chronic pain hugely impacts not only patients but their families and friends as well. Often people seek out the newest research and treatments in the hopes of reducing their pain and suffering. While we are excited about the results of this study, we believe some cautions are in order in interpreting our results. This study was very small; only ten fibromyalgia patients were tested. Therefore, the results must be replicated on a larger scale, with more people. There are also a number of questions to be answered regarding proper dosing, interactions with other medications, and whether or not beneficial effects are maintained over a long period of time.

Consequently, this study should not be interpreted to suggest that LDN is a well-accepted treatment for fibromyalgia pain and fatigue. Although we are pleased with the results of this pilot trial, it is still too early to say how effective LDN will be for individuals not in this study.

What’s next?

We are currently running a double-blind trial and are enrolling participants for that study. We expect that study to be finished by the end of 2009. Individuals with fibromyalgia who are close to Stanford University can participate in the trial. More information can be found at: http://snapl.stanford.edu/ldn/

We will continue to test LDN and similar medications, as we seek to develop treatments for chronic pain that are highly effective, easily available, and have a low incidence of side-effects.

Who should I contact if I have additional quiestions or am interested in supporting your research?

General inquiries and inquiries regarding financial support of our research should be directed to snapl@stanford.edu

Funding Available for Gulf War Illness Research

The Department of Defense Gulf War Illness Research Program, part of the Congressionally Directed Medical Research Programs, has issued an announcement of funding availability for scientific research for Gulf War Illness, a form of chronic multisymptom illness affecting 250,000 of the 697,000 veterans of the 1991 Gulf War.

The pre-proposal deadline is very short – May 14, 2010.

More information on this funding request for proposals (RFP) for Gulf War Illness is available at:  http://cdmrp.army.mil/funding/gwirp.htm

Fibromyalgia is one of several presumptive conditions for VA service-connection for Gulf War veterans.

Women Gulf War Veterans with chronic conditions Affected Differently than Men

Fibromyalgia Gets Worse During Menstruation; Study Shows Symptoms of Irritable Bowel Syndrome and Interstitial Cystitis Also Worsen

Editor’s note:  Seven percent of veterans of the 1991 Gulf War are women.  This article notes how they are affected differently than their male counterparts, and is an important step in learning more about the chronic multisymptom illness (CMI) that affects – according to the Institute of Medicine of the National Academy of Science -- 250,000 veterans of the 1991 Gulf War. 

Of note, IBS and Fibromyalgia are presumptive conditions for Gulf War veterans, male and female, seeking VA service-connection.

By Charlene Laino, WebMD Health News; Reviewed by Laura J. Martin, MD

(Toronto – WebMD Article) - Symptoms of irritable bowel syndrome (IBS), fibromyalgia, and a painful bladder condition called interstitial cystitis (IC) seem to get worse in some women right before and during menstruation, researchers report.

All three are disorders of the autonomic nervous system. That's the part of the brain, spinal cord, and nerves that controls functions such as blood pressure and bladder control; these functions are largely involuntary and below our level of consciousness.

"Since other autonomic disorders like migraine and fainting seem to have menstrual variations, we theorized that these conditions would have these variations as well," says Thomas Chelimsky, MD, professor of neurology at Case Western Reserve University in Cleveland.

IBS is characterized by abdominal pain, constipation, bloating, and diarrhea, while fibromyalgia is characterized by pain throughout the body, along with tender points. IC patients have pain in the bladder. All three conditions affect women more than men. Stress and anxiety can exacerbate symptoms of all three, Chelimsky tells WebMD.

For the study, 79 women with IBS, 77 women with fibromyalgia, and 129 women with IC filled out a questionnaire asking about the severity of their symptoms throughout the month.

A total of 25% of the IBS patients, 18% of the fibromyalgia patients, and 9% of the IC patients reported worsening of symptoms during or before their period.

While not addressed by the study, Chelimsky believes fluctuations in hormone levels may explain the findings.

"Estrogen is a pain preventative," Chelimsky says. Levels are at their lowest right before menstruation and are still low while a woman has her period.

Additionally, 15% of women in the study reported worse pain at menopause, another time estrogen levels drop. In a surprising finding that the researchers could not explain, 37% of women said symptoms got worse at the time of their first period.

Also unknown is why symptoms fluctuate with hormone levels in some women and not others.

The findings of the poster presentation were reported here at the annual meeting of the American Academy of Neurology.

Asked to comment on the findings, Nathan Wei, MD, clinical director of the Arthritis and Osteoporosis Center of Maryland, says, "This study confirms the clinical impression made by practitioners for many years -- that hormonal shifts play a major role in symptom exacerbation."

Chelimsky says that other research shows that women with IBS, fibromyalgia, and IC who are on estrogen-containing birth control pills seem to have fewer symptoms than other women with the conditions.

"I wouldn't recommend patients go on the pill [for this reason]," Chelimsky says.

"But if they have bad periods, they may want to get on an exercise program. Studies have shown that's the best thing you can do to improve symptoms," he says.

New IOM Panel Finds Nine Conditions Caused by or Associated with 1991 Gulf War Service

Written by Anthony Hardie, 91outcomes.com

(91outcomes.com) - A myriad of physical and mental health conditions are associated with the 1991 Gulf War, says a new report released April 9, 2010 by the Institute of Medicine (IOM), which also found that Gulf War Illness is real.  

The report, entitled, “Gulf War and Health: Volume 8: Update of Health Effects of Serving in the Gulf War, found five broad types of physical and mental health outcomes caused by the 1991 Gulf War and four more for which their is limited but suggestive evidence of causation.

Among the physical ailments the IOM found to have "sufficient evidence of a causal relationship" are "multisymptom illness" (commonly referred to as Gulf War Illness), functional gastrointestinal disorders such as irritable bowel syndrome (IBS) and dyspepsia (upset stomach), and chronic fatigue syndrome.  

The IOM panel also found sufficient evidence of a causal relationship between Gulf War service and PTSD,  and other psychiatric disorders that persist at least 10 years after deployment.

The panel also found "limited/suggestive evidence of a causal relationship" between 1991 Gulf War service and  ALS, fibromyalgia and chronic widespread pain, "self-reported" sexual difficulties, and mortality "from external causes, primarily motor-vehicle accidents" in the early years following Gulf War deployment.  

The panel noted a long list of conditions for which inadequate research currently exists to determine whether or not there is a clear association with Gulf War service, as well as a shorter list of conditions for which current research suggests are not associated with Gulf War service.

Generally, the U.S. Department of Veterans Affairs (VA) follows IOM panel recommendations as a basis for new "presumptive" conditions for the purposes of VA service-connected disability claims.  Conditions for which there is "sufficient evidence of a causal relationship" are the most likely for new VA presumptions.  Conditions for which there is "limited/suggestive evidence of a causal relationship" may or may not be made presumptive by VA.

The verbatim list from the new IOM panel is posted below.

The panel also noted that 

***

Summary of Findings Regarding Associations Between Deployment to the Gulf War and Specific Health Outcomes

Sufficient Evidence of a Causal Relationship

·      PTSD.
  Sufficient Evidence of an Association

·      Other psychiatric disorders, including generalized anxiety disorder, depression, and substance abuse, particularly alcohol abuse. These psychiatric disorders persist for at least 10 years after deployment.

·      Gastrointestinal symptoms consistent with functional gastrointestinal disorders such as irritable bowel syndrome and functional dyspepsia.

·      Multisymptom illness.

·      Chronic fatigue syndrome. 


Limited/Suggestive Evidence of an Association

·      ALS.

·      Fibromyalgia and chronic widespread pain.

·      Self-reported sexual difficulties.

·      Mortality from external causes, primarily motor-vehicle accidents, in the early years after deployment. 


Inadequate/Insufficient Evidence to Determine Whether an Association Exists

·      Any cancer.

·      Diseases of the blood and blood-forming organs.

·      Endocrine, nutritional, and metabolic diseases.

·      Neurocognitive and neurobehavioral performance.

·      Multiple sclerosis.

·      Other neurologic outcomes, such as Parkinson’s disease, dementia, and Alzheimer’s disease.

·      Incidence of cardiovascular diseases.

·      Respiratory diseases.

·      Structural gastrointestinal diseases.

·      Skin diseases.

·      Musculoskeletal system diseases.

·      Specific conditions of the genitourinary system.

·      Specific birth defects.

·      Adverse pregnancy outcomes such as miscarriage, stillbirth, preterm birth, and low birth weight.

·      Fertility problems. 


Limited/Suggestive Evidence of No Association

·      Peripheral neuropathy.

·      Mortality from cardiovascular disease in the first 10 years after the war.

·      Decreased lung function in the first 10 years after the war.

·      Hospitalization for genitourinary diseases.

*SOURCE:  National Academy of Sciences, Institute of Medicine, “Gulf War and Health: Volume 8: Update of Health Effects of Serving in the Gulf War,” April 2010, p. 8 (Box S-1). 

***

IOM criteria for evidence of relationship to the 1991 Gulf War

Sufficient Evidence of a Causal Relationship

Evidence is sufficient to conclude that a causal relationship exists between being deployed to the Gulf War and a health outcome. The evidence fulfills the criteria for sufficient evidence of a causal association in which chance, bias, and confounding can be ruled out with reasonable confidence. The association is supported by several of the other considerations used to assess causality: strength of association, dose-response relationship, consistency of association, temporal relationship, specificity of association, and biologic plausibility.

Sufficient Evidence of an Association

Evidence suggests an association, in that a positive association has been observed between deployment to the Gulf War and a health outcome in humans; however, there is some doubt as to the influence of chance, bias, and confounding.

Limited/Suggestive Evidence of an Association

Some evidence of an association between deployment to the Gulf War and a health outcome in humans exists, but this is limited by the presence of substantial doubt regarding chance, bias, and confounding.

Inadequate/Insufficient Evidence to Determine Whether an Association Exists

The available studies are of insufficient quality, validity, consistency, or statistical power to permit a conclusion regarding the presence or absence of an association between deployment to the Gulf War and a health outcome in humans.

Limited/Suggestive Evidence of No Association

There are several adequate studies, covering the full range of levels of exposure that humans are known to encounter, that are consistent in not showing an association between exposure to a specific agent and a health outcome at any level of exposure. A conclusion of no association is inevitably limited to the conditions, levels of exposure, and length of observation covered by the available studies. In addition, the possibility of a very small increase in risk at the levels of exposure studied can never be excluded. 

*SOURCE:  National Academy of Sciences, Institute of Medicine, “Gulf War and Health: Volume 8: Update of Health Effects of Serving in the Gulf War,” April 2010, pp. 5-6.

Gulf War Syndrome real, Institute of Medicine concludes

By Janet Raloff

(Science News) - Hundreds of thousands of U.S. veterans who claim to suffer from Gulf War Syndrome just received powerful new ammunition against arguments that their symptoms are trivial, if not altogether fictional. On April 9, the Institute of Medicine – the health arm of the National Academy of Sciences – issued a report that concludes military service in the Persian Gulf War has not only been a cause of post-traumatic stress disorder in some veterans but also is “associated with multisymptom illness.”

That multisymptom illness is IOM’s moniker for what the vets refer to as Gulf War Syndrome.

"It is clear that a significant portion of the soldiers deployed to the Gulf War have experienced troubling constellations of symptoms that are difficult to categorize," according to neuroscientist Stephen L. Hauser of the University of California, San Francisco. He chaired the IOM committee that issued the new report.

"Unfortunately,” Hauser said, “symptoms that cannot be easily quantified are sometimes incorrectly dismissed as insignificant and receive inadequate attention and funding by the medical and scientific establishment.  Veterans who continue to suffer from these symptoms deserve the very best that modern science and medicine can offer to speed the development of effective treatments, cures, and – we hope – prevention.”

The new report argues that medicine’s trouble in defining the nature or precise cause(s) of Gulf War Syndrome does not negate its existence. Indeed, the IOM’s new analysis “began with the premise that multisymptom illness is a diagnostic entity.” Its analysis then investigated evidence to determine whether a link exists between multiple, unexplained symptoms and Gulf War deployment.

And IOM’s report now concludes that Gulf War Syndrome is real, based on data documenting a high rate of symptoms in former U.S. troops who had served in the Gulf War nearly two decades ago. High-quality surveys of Gulf War vets from other nations, such as the United Kingdom and Australia, show many of those men also have been suffering similar chronic symptoms, which could include everything from gastrointestinal illness and mental confusion, to attacks of sudden vertigo, intense uncontrollable mood swings, fatigue and sometimes numbness – or the opposite, constant body pain.

Last month, a team of researchers headed by Robert Haley of the University of Texas Southwestern Medical Center at Dallas reported new brain-imaging confirmation of Gulf War illnesses, which it described as a trio of syndromes with puzzling symptoms.

Like the UT Southwestern scientists, the IOM committee could not pin down the source of the vets’ symptoms. Equally puzzling was why some troops sustained major chronic illness after a short tour of duty while others from their military units incurred no such symptoms after many years in the field. Indeed, it may prove difficult – if not impossible – to reconstruct what happened nearly 20 years after the fact, the IOM committee noted.

But there’s certainly a suspicion, it said, that multisymptom Gulf War Syndrome(s) may reflect interactions between environmental exposures and genes, such that genetics predisposed many troops to illness. IOM now recommends that research commence immediately to investigate that genetics angle. And there should be a big enough population to study this in, IOM says, with more than one-third of the 700,000 Gulf War vets claiming multisymptom illnesses associated with their military service.

The report also calls for a substantial commitment to improve identification and treatment of multisymptom illness in Gulf War veterans. That would, of course, first require that the Department of Veterans Affairs acknowledge these syndromes as real disease.

WASHINGTON POST: Up to 250,000 Gulf War veterans have 'unexplained medical symptoms'

Written by David Brown, Washington Post Staff Writer

(Washington – Washington Post) - As many as 250,000 veterans of the first Gulf War "have persistent unexplained medical symptoms" whose cause may never be found, although genetic testing and functional brain imaging may eventually shed some light on the problem.

That is one of the conclusions of a new review of research on the constellation of physical complaints originally known as "Gulf War syndrome" experienced by many soldiers soon after the United States drove invading Iraqi forces out of Kuwait in early 1991.

The review, by the National Academy of Science's Institute of Medicine, found that the only illness clearly caused by the Gulf War is post-traumatic stress disorder (PTSD). It is present in 2 to 15 percent of Gulf War veterans (depending on how it is diagnosed), and about three-times more common in them than in soldiers who served at the same time but were deployed elsewhere.

The 12-member panel of medical experts also found "evidence of an association" between Gulf War service and anxiety disorder, alcohol abuse, dyspepsia, irritable bowl syndrome, and "multisymptom illness" (its term for Gulf War syndrome) although not clearly a causal one.

Among the features of "multisymptom illness" are fatigue, muscle and joint pain, poor sleep, moodiness, lack of concentration, and in some people, skin rash and diarrhea. A survey of 10,000 veterans conducted in 2005 found that 37 percent of those who were in the Gulf had the illness, compared to 12 percent deployed elsewhere.

An increase in vague symptoms and persistent pain has also been seen in some non-American groups, including British troops who served in the Gulf, and Danish peacekeepers who were there after the war.

"We concluded that these symptoms are highly prevalent, persistent, and apparently disabling in this veteran population, even two decades after the war," said Stephen L. Hauser, the panel chairman and a professor of neurology at the University of California at San Francisco. "They defy efforts, thus far, to fully understand their cause."

The 289-page report released Friday was generally praised by advocates for more attention to Gulf War veterans, and those who believe there is a cause to be found for Gulf War syndrome.

Paul Sullivan, director of Veterans for Common Sense, in Washington, said his organization will now ask Secretary of Veterans Affairs Eric K. Shinseki to propose regulations that will provide disability benefits and free medical care to all veterans suffering from "multisymptom illness."

"This is a huge victory for Gulf War veterans," said Sullivan, a 47-year-old former Army scout who said he has been ill since his Gulf service.

Two years ago, the VA-appointed Research Advisory Committee on Gulf War Veterans' Illnesses issued a report saying that toxic exposures were probably the cause of Gulf War illness.

Its chairman, James Binns, asserted Friday that the two reports "agree on the most important things -- that the multisymptom illness that affects so many Gulf War veterans is a terrible, distinct illness, and that this nation can and should launch a Manhattan Project-style research program to identify treatments and prevent this from happening again."

The Institute of Medicine panel, whose members are academic physicians and epidemiologists, reviewed 1,000 studies, focusing particular attention on 400 completed since the institute's last review of Gulf War illnesses in 2006.

Many veterans think exposure to pesticides, medicines and environmental toxins damaged soldiers' brain and immune systems, causing chronic illness.

The panel called for "genome-wide association studies," which scan large numbers of people looking for gene variations shared by sufferers of a single disease. It also said that sensitive brain imaging and tests for overstimulation of the immune system are promising tools for future research.