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Friday, October 22, 2010

VA Breaks Promises on Gulf War Veterans Data Report

VA officials Can Expect Agitated Veterans at November 1-2 RAC meetings in Boston if Completed Report is Not Public by then

Written by Anthony Hardie, 91outcomes.com

(91outcomes.com) – Gulf War veterans and many of the Institute of Medicine-reported 250,000 veterans suffering from Gulf War Illness (Gulf War Syndrome) have found encouragement at the new VA, with an internal Task Force and lengthy Task Force report and task list, a new internal Gulf War Steering Committee, and redone research proposal requests that specifically exclude stress or psychiatric studies and require a focus on treatments that would improve the health and lives of ill Gulf War veterans.

However, as noted by the VA’s Advisory Committee on Gulf War Veterans (ACGWV) chairman Charles Cragin, good decisions cannot be made without good data. In its written final report, Cragin’s committee called for prompt restoration of Gulf War Veterans Information System (GWVIS) reports to provide that data.

The email chain shown below, submitted by longtime Gulf War veteran advocate Kirt Love, who requested and succeeded in seeing created the ACGWV, is regarding repeated promises, broken again and again by current VA officials regarding the GWVIS, which provide critically important data about Gulf War veterans.

On the positive side, it is good news to hear that the new report is a, “100+ page report contains a lot more statistics than the old GWVIS,” and, “The goal of the new report is to provide a more integrated and consistent set of data,” than the old GWVIS reports originally developed by legendary Gulf War veteran advocate and former VA data employee Paul Sullivan.

On the negative side, however, “As such, it is taking [VA] a lot more time to validate and proof than anticipated,” says VA’s top data official.

The timeline of VA’s newest set of broken promises, most made by VA Senior Executive Service official William Kane, is as follows:

February 2009: As a member of VA’s now-completed Gulf War Veterans’ Advisory Committee, Love requested the new GWVIS report, which was expected by committee members, the RAC, and Gulf War veterans and advocates in a timely manner.
February 25, 2010: Love again requests an update, after a year has gone by. Nearly a week later, a VA official responds to tell Love they plan on “publishing updated GWVIS reports by the end of June 2010. We plan to publish quarterly after that.”
August 11, 2010. With the June 2010 deadline now long past, Love contacts VA again. The response from the VA official: We have a “targeted completion date of the end of September.”
September 24, 2010. Love asks VA if the “end of September” date is still valid. The official responds saying, “It will probably be more like early October.”
October 18, 2010. With the “end of September” and “early October” deadlines now past, Love contacts VA yet again. Three days later, a top VA data official responds, “I am expecting the remaining validation work and concurrence process to take approximately 2 weeks,” meaning early November at the earliest.
October 21, 2010. A justifiably frustrated Love publishes the email chain of more broken promises at Gulflink.

It should be noted that on November 1-2, 2010, the Research Advisory Committee on Gulf War Veterans’ Illnesses will meet in Boston, Mass. VA officials should expect justifiably pointed questions from highly agitated Gulf War veteran members and other advocates if the very long overdue GWVIS has not been finalized and publicly released before that time.

The full text of Kirt Love’s email chain is available below and from Love’s “gulflink” Yahoo group, at: http://groups.yahoo.com/group/gulflink/message/11977

MORE INFORMATION:

GulfLINK (DoD): http://www.gulflink.osd.mil/
GulfBLINK.org (Advocacy Organization): http://www.gulflink.org/
Desert Storm Battle Registry: http://www.gulflink.org/register.htm

----------------------

From: Kirt Love [mailto:kirt@gulflink.org]
Sent: Thursday, February 25, 2010 11:03 AM
To: Kane, William (SES), VBAVACO
Subject: Fw: February 2008 vs August 2008 GWVIS report totals

Mr. Kane
My name is Kirt P. Love, disabled veteran. Founder and member
of the VA ACGWV committee that concluded in September 2009.
Short and sweet, I sent a email into VBA requesting a answer about
discrepancies in the GWVIS report released Feb 2009. The numbers
compared flaws from the Feb 2008 report to the Aug 2008 report.
In May I pushed harder and Thomas Kniffen got involved. There
was a subcommittee meeting of the ACGWV with VBA on June
30th to discuss the state of report errors. I attended.
Its been 8 months since that meeting and one year since I sent
the original email into VA on this topic. I understand that this has
been in debate for some time over coding issues at VBA.
Will there be a timeline for the updated reports being released?
Will the 2009 report coincide with this?
Will the VBA website post this information with a explanation
of what transpired?
http://www.vba.va.gov/REPORTS/gwvis/index.asp
I imagine some of this will be shared with Jim Binns at the RAC
meeting next week. As I share information with Jim on what took
place with my committee.
Thank you for your time and attention.
                                                Sincerely
                                                Kirt P. Love
                                                Director, DSBR
                                                        former member of the ACGWV committee

----------------------

----- Original Message -----
From: Kane, William (SES), VBAVACO
To: kirt@gulflink.org
Sent: Tuesday, March 02, 2010 11:39 AM
Subject: RE: February 2008 vs August 2008 GWVIS report totals

In case you were not present at the 2 Mar RACGWVI meeting, we committed to a goal of publishing updated GWVIS reports by the end of June 2010. We plan to publish quarterly after that. As before, we'll post the reports on our website. Thanks for your interest in the matter.

-------------------

From: Kirt Love <kirt@gulflink.org>
To: Kane, William (SES), VBAVACO
Sent: Wed Aug 11 11:24:27 2010
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Mr. William
It is August 11th 2010, it has been 14 months since
the ACGWV met with VBA about the GWVIS report
issues.
The March RAC meeting you promised a June delivery
date for the updated GWVIS. It is now mid August
and not even a explanation.
Is there a publication date?
                                            Sincerely
                                            Kirt P. Love
                                            Director, DSBR
                                                Former member VA ACGWV committee

--------------

----- Original Message -----
From: Kane, William (SES), VBAVACO
To: kirt@gulflink.org
Sent: Wednesday, August 11, 2010 11:25 AM
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Thanks for your follow-up note.

It was decided that rather than resuming publication of the GWVIS report, a new report would be generated by the Office of Policy and Planning (OPP). The goal of the new report is to provide a more integrated and consistent set of data.

We are currently working with OPP and other VA offices to generate the report with a targeted completion date of the end of September.

Thanks again for your interest.

---------

From: Kirt Love [mailto:kirt@gulflink.org]
Sent: Friday, September 24, 2010 1:19 PM
To: Kane, William (SES), VBAVACO
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Is this still on for the end of September?
                                Sincerely
                                Kirt P. Love
                                Director, DSBR

---------------------

----- Original Message -----
From: Kane, William (SES), VBAVACO
To: kirt@gulflink.org
Sent: Friday, September 24, 2010 1:15 PM
Subject: RE: February 2008 vs August 2008 GWVIS report totals

It will probably be more like early October. The draft report was prepared and is being reviewed internally with comments due on 9/28. Depending on the nature of the comments and the time it takes for corrections, the release could be later than 30 September.

-------------------------

From: Kirt Love [mailto:kirt@gulflink.org]
Sent: Monday, October 18, 2010 12:48 PM
To: Kane, William (SES), VBAVACO
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Its now mid October, is this about to go out?
                                        Sincerely
                                        Kirt P. Love
                                        Director, DSBR

----------------------

----- Original Message -----
From: Tran, Dat (SES) VACO
To: kirt@gulflink.org
Sent: Thursday, October 21, 2010 4:29 PM
Subject: RE: February 2008 vs August 2008 GWVIS report totals

Kirt:
VA analysts are still going through the draft report to validate all the statistics and proof all the narratives. This 100+ page report contains a lot more statistics than the old GWVIS. As such, it is taking us a lot more time to validate and proof than anticipated.
Once the validation is completed, we will circulate the report internally for final review and concurrence. I am expecting the remaining validation work and concurrence process to take approximately 2 weeks. Please feel free to contact me if you have any questions. Hope all is well with you. As soon as the report is concurred internally for release, I’ll let you know.
Best,
Dat

------------------------------

---------- Forwarded message ----------
From: Kirt Love <kirt@gulflink.org>
Date: Thu, Oct 21, 2010 at 10:05 PM
Subject: Fw: February 2008 vs August 2008 GWVIS report totals - new GWVIS report
To: Gulflink <gulflink@yahoogroups.com>
Cc: Jim Binns, rac@bu.edu, ANTHONY HARDIE,

Dear Readers
See what I meant. VA knows that to make this go
away they need this report to hit in November. Congress
is out for the holiday season and nothing gets going
again until March 2011. They want this to go out silent
and be ignored as long as possible. The last year
is the hint based on there past track record.
I told you all they would continue to stall. I told you
that they wouldnt make the September, and then
October deadlines.
There is even conflicting internal information on the
status of this report. As another department person
had said this was already in concurrence. Now Dat
is saying its back in review.
I have little faith the report will have teeth. But, it is
also a reflection on Gingrich and his task force much
less the bad lip my committee gave it. Just have
to see, as the word "Narratives" has gotten my
attention. That usually means some at least some
investigation work requiring oration.
Well, you wont see this anywhere else but "Gulflink".
                                            Sincerely
                                            Kirt P. Love
                                            Director, DSBR

Monday, October 18, 2010

Gulf War Presumptive Chronic Pain Condition and Costochondritis: Pain the Chest and Ribs

From Fibromyalgia & CFS Blog

By Adrienne Dellwo, Fibromyalgia & Chronic Fatigue Guide

-----------------------------------------------------

Do you get a horrible burning pain in your chest and ribcage? Have you thought you were having a heart attack, only to have doctors say your heart is fine? If so, you may have costochondritis.

This was actually my first fibromyalgia-related pain. When it hit, I ended up in the ER with a suspected heart attack. The doctor ruled out anything cardiac or intestinal, then poked a few spots where my ribs and breastbone come together. That hurt like crazy, so he said I had an injury there and that it would heal in a few days.

Of course, it didn't heal. It comes and goes, causing the worst of my pains and a lump on my breast bone that looks like half a golf ball. In the medical community, it's a debate as to whether this is costochondritis, somehow made chronic by fibromyalgia, or just another symptom of fibromyalgia that mimics costochonritis. Personally, I think it's a separate condition. My chest pain is accompanied by a lump on my breastbone that gets better with ice and anti-inflammatories. That doesn't sound like fibromyalgia to me!

Note: If you start getting chest pain, don't assume it's costochondritis or fibromyalgia! Always treat chest pain as a possible heart problem and get it checked out immediately.

Learn more about costochondritis, its symptoms, how it's diagnosed, and how you can treat it:

Fibromyalgia & Costochondritis

Do you have costochondritis? How bad is it? Do you think it's part of FMS or a separate condition? Leave your comments below!

Learn more or join the conversation!

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New Study: Gulf War Presumptive Pain Condition Overlaps with Restless Legs Syndrome

Many People With Fibromyalgia May Also Have Restless Legs Syndrome and Poor Sleep Quality, New Study Finds

By Bill Hendrick, WebMD Health News; Reviewed by Laura J. Martin, MD

Oct. 15, 2010 -- People who have fibromyalgia are much more likely to also have restless legs syndrome, according to a new study. Restless legs syndrome is a baffling disorder that causes uncomfortable sensations in the legs and/or the urge to move the legs.

The study, published in the Oct. 15 issue of the Journal of Clinical Sleep Medicine, found that 33% of people with fibromyalgia also had restless legs syndrome, compared to 3.1% who did not have fibromyalgia.

The findings are important because sleep disruption caused by restless legs syndrome may exacerbate the symptoms of fibromyalgia, researchers say.

But the good news, they say, is that restless legs syndrome can be treated and may improve the quality of life of people who have fibromyalgia.

Fibromyalgia affects 2%-4% of the U.S. population and is more common in women, according to the American College of Rheumatology.

A Visual Guide to Fibromyalgia

Sleep Disturbances Are Common in Fibromyalgia Patients

“Sleep disruption is common in fibromyalgia and often difficult to treat,” Nathaniel F. Watson, MD, one of the authors and an associate professor of neurology at the University of Washington in Seattle, says in a news release. “It is apparent from our study that a substantial portion of sleep disruption in fibromyalgia is due to restless legs syndrome.”

The study involved 172 people with fibromyalgia, 93% of whom were women. They were compared with 63 people who were free of pain and fatigue. Those in the control group were younger, with a mean age of 41, compared to 50 for those with fibromyalgia.

A measure of sleep quality showed that problems with sleeping were more severe among people with fibromyalgia and restless legs syndrome.

The researchers conclude that a substantial portion of sleep disturbance found in patients with fibromyalgia may be related to restless legs syndrome.

They suggest that doctors routinely ask fibromyalgia patients about the symptoms of restless legs syndrome, because treatment may improve their sleep and quality of life.

-------------

Fibromyalgia, Irritable Bowel Syndrome, and Chronic Fatigue Syndrome are all presumptive conditions for Gulf War veterans, meaning disability claims are, in theory, nearly “automatic”

------------------------

Restless Leg Syndrome (RLS) Overview

Restless leg syndrome is a disorder in which there is an urge or need to move the legs to stop unpleasant sensations.

Symptoms

RLS leads to sensations in the lower legs that make you uncomfortable unless you move your legs. These sensations:

Usually occur at night when you lie down, or sometimes during the day when you sit for long periods of time
May be described as creeping, crawling, aching, pulling, searing, tingling, bubbling, or crawling
May last for 1 hour or longer
Sometimes also occur in the upper leg, feet, or arms

You will feel an irresistible urge to walk or move your legs, which almost always relieves the discomfort.

Most patients have rhythmic leg movements during sleep hours, called periodic limb movement disorder (PLMD).

All of these symptoms often disturb sleep. Symptoms can make it difficult to sit during air or car travel, or through classes or meetings.

Note: Symptoms may be worse during stress or emotional upset.

Treatment

There is no known cure for restless leg syndrome, but there are treatments that can help improve symptoms.

Treatment is aimed at reducing stress and helping the muscles relax. The following techniques may help:

Warm baths
Gentle stretching exercises
Massage

Low doses of pramipexole or ropinirole (Requip) can be very effective at controlling symptoms in some people.

If your sleep is severely disrupted, your health care provider may prescribe medications such as Sinemet (an anti-Parkinson's medication), gabapentin and pregabalin, or tranquilizers such as clonazepam. However, these medications may cause daytime sleepiness.

Patients with iron deficiency will receive iron supplements.

Low doses of narcotics may sometimes relieve symptoms of restless leg syndrome.

Causes

Restless leg syndrome (RLS) occurs most often in middle-aged and older adults. Stress makes it worse. The cause is not known in most patients.

RLS may occur more often in patients with:

Peripheral neuropathy
Chronic kidney disease
Parkinson's disease
Pregnancy
Iron deficiency
Use of certain medications

A form of RLS may be passed down in families. This may be a factor when symptoms start at a younger age. The abnormal gene has not yet been identified.

Restless leg syndrome can result in a decreased quality of sleep (insomnia). This lack of sleep can lead to daytime sleepiness, anxiety or depression, and confusion or slowed thought processes.

Tests & diagnosis

There is no specific examination for restless leg syndrome. The health care provider will not usually find any abnormalities, unless you also have peripheral nerve disease. Blood tests (CBC and serum ferritin) may be done to rule out iron deficiency anemia, which in rare cases can occur with restless leg syndrome.

Examination and testing may be used to rule out other disorders with similar symptoms.

Prognosis

Restless leg syndrome is not dangerous or life-threatening, and it is not a sign of a serious disorder. However, it can be uncomfortable and disrupt your sleep.

Prevention of Symptoms

Techniques to promote muscle relaxation and stress reduction may reduce the incidence of restless leg syndrome in people prone to the condition.

Complications

Insomnia may occur.

When to contact a doctor

Call for an appointment with your health care provider if:

You have symptoms of restless leg syndrome
Your sleep is disrupted

Thursday, October 8, 2009

Discussion: Potential Treatments for Chronic Fatigue, Chronic Pain, and Gulf War Illness

Written by Anthony Hardie, 91outcomes

(91outcomes.blogspot.com - October 8, 2009) - There is much current debate about possible treatments for chronic fatigue and chronic pain. Several supplements, new treatments, and novel uses of existing medications may be in line for helping with some of the worst symptoms of Gulf War illness. Many of them remain controversial, but if successful, scientific studies may soon show one or more to be effective for Gulf War veterans suffering from chronic multi-symptom illness.

Several of the drugs and supplements are currently being studied in treatment trials funded by the U.S. Department of Defense Congressionally Directed Medical Research Programs (CDMRP) as "high-risk" (meaning it might not work and thus would be lost money), "high-gain" (meaning having a great impact on the health and lives of ill Gulf War veterans) studies. Others have been shown through prior studies or anecdotal evidence as possibly having positive effects for veterans with Gulf War illness symptoms.

Vitamin D. With winter approaching and natural production of Vitamin D clouded and bundled over, among these is Vitamin D, probably the least controversial of these potential treatments. An article on Canada.com provides an excellent overview of the potential benefits of supplementary Vitamin D for those suffering from chronic pain and auto-immune conditions, including fibromyalgia, a presumptive condition for Gulf War veterans. It is also thought to be beneficial for people suffering from cognitive decline, a common complaint among ill Gulf War veterans.

According to the article:

"...Some scientists now believe that autoimmune diseases start when a bacterial infection disrupts our vitamin D receptors, which in turn causes vitamin D deficiency. The end result is an immune system thrown into flux. The weakened immune system then becomes more susceptible to more infections, and a vicious circle begins."

Coenzyme Q10. Also non-controversial is Ubiquinone, or CoQ10 as it is more commonly known, which is currently under investigation by a Congressionally Directed Medical Research Program funded study at the University of California at San Diego. CoQ10 is essentially food for the microorganisms at the cellular level, and is thought by some to be depleted in people with certain conditions, including ill Gulf War veterans and people with HIV/AIDS, heart disease, and auto-immune disorders. Doses as high as 1,000 mg or more may be beneficial for ill Gulf War veterans at the cellular level, according to the hypothesis being tested.

Lower-cost CoQ10 (Ubiquinone), or a more powerful formulation known as Ubiquinol may be used. Read more about CoQ10 from the University of Maryland Medical Center.

Carnosine. Carnosine, a dipeptide found highly concentrated in muscle and brain tissues and, like CoQ10, available as an over-the-counter supplement, is currently being studied in a CDRMP-funded treatment trial with Gulf War veterans at Georgetown University in Washington, DC. Carnosine has been found to have signficant anti-oxidant properties and believed by some scientists to be key in halting or slowing the progression of Gulf War illness and alleviating some of its symptoms.

LDN. Low-dose Naltrexone, also known as LDN, is currently being investigated for its help in alleviating the symptoms of autoimmune and central nervous system disorders, as well as multiple sclerosis (MS), a condition thought (but not yet proven) to be more prevalent among Gulf War veterans. The drug, originally used to treat alcohol and other addictions, has been discovered to have a positive impact in many other areas. A CDMRP-funded study of LDN is ongoing at Stanford University in the California Bay area, though it is not yet recruiting volunteers.

Read more about LDN from the Low Dose Naltrexone Homepage.

Mifepristone. A synthetic steroid compound called mifepristone is current under scientific investigation for a number of conditions, including Gulf War illness in a placebo-controlled treatment trial at the Bronx VA Medical Center in New York City. The study is also funded by the Congressionally Directed Medical Research Program (CDMRP).

The drug was controversial in previous years because of its unusual side effect of causing the body to spontaneously miscarry during the early months of pregnancy, and therefore, pregnant Gulf War veterans are not allowed to participate in the study.

Stimulants. Varying in their level of controversy and availability without or with a prescription, caffeine, ADHD drugs, and Provigil are among the drugs compared for their potential impact on chronic fatigue in an excellent article posted this week by health writer Maija Haavisto, who notes:

"People with CFS/ME [Chronic Fatigue Syndrome/Multiple Encepholytis]are often not "sleepy tired", but agitated or restless despite the crushing fatigue. Some CFS/ME doctors believe this is because the nervous system is overstimulated and thus sedative drugs would be more appropriate."

Chronic fatigue and muscle weakness are among the most common symptoms reported by ill Gulf War veterans, and Chronic Fatigue Syndrome is another presumptive condition for those with service in the Gulf War theater of operations since August 1990. Read the full discussion on stimulants and chronic fatigue here.

THC. Perhaps most controversial possible treatment of all (and some would even question the use of the word "treatment") is the use of THC, the active ingredient in marijuana, for chronic pain (including fibromyalgia), paresthesias (burning, tingling, and itching neurological symptoms), and bowel issues common to Gulf War illness. The use of medical marijuana is being debated in many states, and has already been legalized in 13, including Illinois, Minnesota, California, and Michigan, though there are many who believe that the problems of medical marijuana may outweigh its benefits. See a good discussion about the debate currently ongoing in Iowa (yes, Iowa, of all places) here.

Where to Find Them

Several of these possible treatments are available by prescription only, though some Gulf War veterans report that even VA physicians may be willing to prescribe them for ill Gulf War veterans even on a trial basis.

Vitamin D, Ubiquinol, Carnosine, CoQ10, and other over-the-counter supplements available without a prescription can be purchased for below-retail cost from Swanson's Vitamins and some other high quality online vitamin sellers, often at prices several times lower than in retail stores.

And, clinical trials, like the one on CoQ10 still recruiting Gulf War veteran volunteers, are also a good source of both potential treatments and helping with the broader goal of finding what works and what doesn't for ill Gulf War veterans with Gulf War Syndrome. More clinical trials for Gulf War veterans, and for fibromyalgia (FM/FMS), chronic fatigue syndrome (CFS/ME), and irritable bowel syndrome (IBS) can be found by typing in the disease name as keywords at ClinicalTrials.gov.