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Tuesday, March 29, 2011

20 Years after Gulf War, Kuwait Still Rebuilding

Contracts awarded to rehabilitate areas damaged during 1991 Gulf War

By WALAA HAWARI – Arab News

RIYADH: The Presidency of Metrology and Environment has signed eight contracts worth SR700 million to rehabilitate areas in the Kingdom affected by the 1991 Gulf War. The rehabilitation program is partly funded by the United Nations, which gave $45 million (about SR170 million).

The Gulf War between Iraq and Kuwait and its Western allies was one of the most environmentally devastating wars ever fought. Iraq dumped approximately 1 million tons of crude oil into the Arabian Gulf, thereby causing the largest oil spill in history. Crude oil was also spilled into the desert, forming oil lakes covering 50 square kilometers. Iraqi troops of the old regime also ignited Kuwaiti oil sources, releasing half a ton of air pollutants into the atmosphere. Environmental problems caused by the oil fires include smog formation and acid rain.

The compensation was paid to countries affected by the Gulf War from the Iraqi government's financial account through the United Nations Compensation Commission.

The UNCC was created in 1991 as a subsidiary organ of the UN Security Council. Its mandate is to process claims and pay compensation for losses and damage suffered as a direct result of Iraq's unlawful invasion and occupation of Kuwait.

The process took a while, PME spokesperson Hussein Al-Qahtani said, as claims from the countries affected were evaluated, followed by an evaluation of the damage and its cost before compensation was paid.

The Saudi government, Al-Qahtani confirms, is now working to sign contracts with a number of international companies to rehabilitate the environment and damaged areas under the supervision of the UN.

Al-Qahtani stressed that out of care for the environment and the general health of the area, the GCC ministerial environment committee took a strong stand for declaring the region a nuclear free zone.

Al-Qahtani also pointed out that the Kingdom is taking steps towards protecting the environment, represented in the signing of The Basel Convention on the Control of Transboundary Movements of Hazardous Wastes and Their Disposal.

Although the Kingdom is encouraging recycling and reaching agreements with international companies to safely dispose of hazardous wastes from hospitals, the spokesman said it is the responsibility of the private sector to provide recycling containers.

"The government is encouraging factories to recycle materials, such as car tires, used oil as well as glass," said Al-Qahtani, adding that it is not the role of the government bodies to drive recycling, but to encourage and monitor. "It is after all an area where private companies benefit the most."

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SOURCE:  http://www.zawya.com/Story.cfm/sidZAWYA20110329032042/KSA:%20Contracts%20awarded%20to%20rehabilitate%20areas%20damaged%20during%201991%20Gulf%20War

Thursday, March 24, 2011

VA Removes Offending GWI Clinical Training Materials Written by Error-in-Judgment-Prone Army Psychiatrist

New Training Materials on the way, but not reviewed by VA’s Gulf War related advisory committees

Active duty U.S. Army Colonel Jeff Peters, a top VA official who works for VA Chief of Staff John Gingrich and charged with overseeing Gulf War veteran issues, has favorably responded to the latest request for clinician training materials offensive to Gulf War veterans to be removed from the VA’s website.  The offending materials have now been removed from VA’s new Gulf War website at www.va.gov/gulfwar.

The VA guide for clinical care providers treating veterans of the 1991 Gulf War had included a lengthy how-to section to train clinicians in dismissing Gulf War veterans complaints and counseling them not to worry about their symptoms.  The lengthy section was written by a U.S. Army psychiatrist,  Colonel Chuck Engel, who last year abruptly quit a DoD funding review panel on Gulf War Illness treatment research after only one meeting. 

Engel’s continued involvement in Gulf War veterans’ issues has long been the subject of concern for Gulf War veterans because of his open disbelief in Gulf War Illness and dismissive attitude towards Gulf War veterans’ chronic multisymptom illness.  The inclusion of his radical beliefs in the VA’s clinical guide, which were unsupported by science, has been a source of consternation among Gulf War veterans, scientific researchers, and clinical care providers since its initial publication by VA in 1998. 

Engel’s unsupported views on Gulf War Illness are not the only problematic highlight of his military career.  Issues related to Engel’s failures in judgment as a longtime supervisor of Nidal Hassan became the subject of national news after Hassan’s deadly Ft. Hood shootings.  Engel was disciplined for failing to take note or report on obvious signs of Hassan’s deadly beliefs. 

According to one news report about Hassan’s supervisory group that included Engel, “They saw no signs of mental problems, no risk factors that would predict violent behavior. And the group discussed other factors that suggested Hasan would continue to thrive in the military, factors that mitigated their concerns.”

Peters says a new clinician training guide related to Gulf War veterans’ health has been completed and will soon be posted to the VA’s Gulf War website.

Neither the VA’s Gulf War Steering Committee, nor the VA’s Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC-GWVI) have been afforded the opportunity to participate in the creation or review of the new clinician training guide. 

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MORE INFORMATION: 

 

--Anthony Hardie

Tuesday, March 22, 2011

Miami VA to host CFS/GWI Research Forum

There are both significant overlaps and distinctions between Chronic Fatigue Syndrome (CFS) and Gulf War Illness (GWI).  Helping to tease that out is the work of Dr. Nancy Klimas, a world leader on both conditions. 

The Miami VA Medical Center will host Dr. Klimas and a number of important colleagues in a public forum this month entitled, "Research Advances in CFS/GWI 2011.”

Speakers include Dr. Nancy Klimas, Dr. Irma Rey, Dr. Dolores Perdomo, Dr. Lina Garcia and other members of the VA-Miami research team. 

The Special Guest Speaker will be Dr. Gordon Broderick of the University of Alberta, Canada. 

WHERE:  Miami VA Medical Center Auditorium (2nd floor)

WHEN:  March 26, 2011 (Sunday), 9:30 am - 12:00 pm. 

CONTACT:  (305) 575-7000 ext. 6706 or 4942

 

--Anthony Hardie

Monday, March 21, 2011

California Gulf War Veteran Tells His Story

Seeks to connect with other Southern California GWI Veterans

I would like to first thank you for your work and dedication in the fight for Gulf War Veterans and their families.

My story sounds a lot like many that I have read about on 9loutcomes and other sources.

I first started having health issues after our pre-deployment vaccinations becoming physically ill then having odd behavior which I was aware of but didn't seem to be able to control. During deployment I went on sick call 2 times that I can recall once for kidney stones (so I was told) and once because I was having difficulties breathing. Neither of these are there records for nor are there records of my pre-deployment shot records.

After returning from deployment with my unit l was discharged 4-5 weeks later having past my date to exit and no longer feeling the Army was where I wanted or needed to be. As a side note before deployment I had maxed out my P.T. Test and had recently take a physical for Special Forces which I have a copy of along with my services and medical records.

Once returning home I continued to struggle with numerous health issues but was unable to get any real help so I dove on and coped to the best of my abilities which at times was not very good. I put myself through college at California State University of Sacramento where I earned a B.S. in Physical Education along with a Teaching Credential in Phys. Ed and a Teaching Credential in Adapted Physical Education, which is Physical Education for children with disabilities. Before the end of my credentialing program i secured a teaching position with L.A.U.S D. (Los Angeles Unified School District) and began working with them when I finished my program.

Over the year I have had many health issues. Chronic respiratory issues to include upper respiratory infections chronic bronchitis and asthma, shingles then post herpetic neuralgia which never went away, some unknown burning sensation on my entire left side of my body and at times on my right foot, leg and arm which the VA neurologist call a chronic pain syndrome which is a mystery, diverticulitis, almost constant rash on my chest neck arms and other parts of my body, chronic fatigue and serious sleep issues.

These are a few of the health issues I have been dealing with and continue to deal with. My wife became pregnant with our first daughter who was still born at 34 weeks into the pregnancy and I have a daughter who had heart surgery for a double aortic arch at 3 months old then another surgery to remove her adenoids and tonsils at 2-3 years of age because they were abnormally large and she had difficulties with her breathing.

I was recently rated in at 70% for panic disorder and anxiety but was denied for all of my physical issues even though I have years of medical documentation from the VA system and outside medical agencies.

I have had many medical procedures Brain MRI’s, body MRI’s, lumbar puncture procedure, nerve conduction test just to name a few. I’m always told the results are normal and usually told to take a pill. One of the issues with that is that I’m sensitive to many medications and extremely sensitive to chemicals in general.

I’m not sure why I’m writing this letter but I felt I should contact you and maybe you could give me some advice. I also would like to help other GW Veterans in any way possible. If at all possible I would like to connect with other ill GW vets in my area. I currently reside in Ventura, California. Sorry about the rambling of this letter.

Thank You

Leo (Email - redbbam@yahoo.com)

Sunday, March 20, 2011

Dave Winnett: Fighting to Uncover the Mysteries of Gulf War Illness

Dave Winnett

As one of tens of thousands of Gulf War Veterans afflicted with constant intense muscle pain and very debilitating fatigue, I did not hesitate for one second when asked to participate in the Congressionally Directed Medical Research Programs (CDMRP) for Gulf War Illness Research. I am ill, but far better off than many of my fellow warriors. As a retired officer of Marines I feel a strong moral obligation to do whatever I can to improve the quality of life for those afflicted by Gulf War-related illnesses. All members of the military are taught to leave no one behind in war. Everyone comes home. Sick Gulf War Veterans will not truly be "home" until solutions to their daily pain and suffering are identified.

I am not a wealthy man. I'm not even a healthy man anymore; at least not physically. But the spiritual wealth I have acquired through the experience of chronic illness and pain make me one of the richest men in this country. Pain and suffering has made a better man of me. It has awakened a part of my spirit that I never knew existed. It has awakened my sense of compassion and empathy for those who suffer alongside me, but who are not blessed with the ability to continue working and providing for their families as I am. I need to help my brothers and sisters-in arms, and I intend to do that in any way that I am able. My body may have slowed, but my mind is still a formidable weapon that I intend to use to fight these illnesses, for myself, and for my comrades.

Much evidence points to the likelihood of genetic predisposition to the chronic illnesses suffered by one-in-four Gulf War Veterans, which explains why many seem to have escaped unscathed. I'm one of the unlucky ones. That said; I truly believe that I was meant to be one those who fell ill due to service in the Persian Gulf War. The United States Marine Corps trained and mentored me for twenty years; God supplied me with the sound mind and body required to be a successful Marine. It's now clear to me that my destiny all along was to become a front-line warrior in the fight to uncover the mysteries surrounding Gulf War Illnesses.

Considering the renewed commitment that I have observed recently on the part of the Departments' of Veterans Affairs and Defense to once and for all solve the mysteries surrounding Gulf War Illnesses, I am energized beyond words. I truly believe that we are on the cusp of medical and scientific discoveries that will soon bring effective treatments to the many Veterans who have been afflicted for nearly twenty years with unexplained chronic illnesses resulting from their service.

The Congressionally Directed Medical Research Programs (CDMRP) for Gulf War Illnesses Research is vital link in the chain of events that will eventually bring relief to tens of thousands of American heroes. I am honored to be afforded the opportunity to play a role in that noble undertaking.

-Dave Winnett, Consumer Reviewer, CDMRP

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Source:  Congressionally Directed Gulf War Illness Medical Research Program, http://cdmrp.army.mil/cwg/stories/2010/dwinnett_profile.shtml

Photos and text used by CDMRP with permission of  Dave Winnett.

Saturday, March 19, 2011

91outcomes Hits New Milestone: 40,000 Visitors

91outcomes today hit a new milestone:  40,000 visitors to the website.

The website is unique in the world in that it focuses solely on health outcomes and news related to the 1991 Gulf War – thus the name, “91outcomes”.

The website had a slow start, as might be expected.  However, for the last seven months running, 91outcomes has averaged more than 5,000 visitors each month.

New 91outcomes postings are also Face-Tweeted – posted simultaneously to Facebook and Twitter to reach additional audiences.

As an example of 91outcomes’ growing reach, yesterday’s new article -- about VA’s seriously problematic “Veterans Health Initiative” training guide for clinicians that still focuses largely on telling doctors to downplay GWI to their patient’s through pages of “reassurance” messages – has already had over 400 unique Facebook users who viewed the story on Facebook and hundreds more on the webpage and a few more via Twitter.

We hope that VA is paying attention. Because it should be.

--Anthony Hardie

91outcomes on Facebook:  http://www.facebook.com/pages/91outcomescom/119738571387856?ref=ts

91outcomes on Twitter:  http://twitter.com/Anthony_Hardie

Email to VA: Why Is VA Still Providing and Touting Flawed GWI Clinician Guide

The email below was sent to VA Chief of Staff John Gingrich’s point person on Gulf War veteran issues (COL Jeff Peters) tonight, March 18, 2011. 

It remains unclear why VA has a uniformed, active duty DoD military officer from DoD’s Office of Force Protection – the source of nearly all of the Gulf War veterans’ mistrust – as VA’s lead staff member on this veterans’ health issue.

--Anthony Hardie

======================

Col. Peters,
 
A few weeks ago following the most recent RAC-GWVI meeting, we discussed your assertion that there was a new Veterans Health Initiative (VHI) publication.  For those cc'ed on this email, the VHI has healthcare providers treating ill 1991 Gulf War veterans as its target audience.  Thereafter, you sent the email pasted below, to which I have to date received no response. 
 
Several weeks later, I note that the Gulf War VHI on va.gov/gulfwar is still the same 2001/02 VHI that everyone has been calling for the last several years for VA to remove because much if not most of it is seriously outdated, misleading, and in many cases now known to be false.    Here's the VA webpage on which it is touted and linked, for easy reference:  http://www.publichealth.va.gov/vethealthinitiative/gulfwar.asp
 
Among the most serious errors in VA's current PGW VHI, featured on your new Gulf War website, are:

  • A focus on "reassurance of patients" rather than providing treatment, or in the absence of effective treatments, explaining with honesty that there currently are none.  These statements alone beginning on page 27 and written by a psychiatrist who is still to this day open about his disbelief in GWI and quit the CDMRP GWIRP review panel last year because the other panelists refused to agree with him (Col. Chuck Engel, one of the supervisory officers reprimanded in the Fort Worth Islamist shooting incident).  This inappropriate monologue on communication with PGW patients goes on for seven pages -- more than is dedicated to any other topic in this VHI. 

It is this kind of lack of responsibility that continues to turn veterans against VA.  Why wouldn't it?

  • "Infectious diseases, however, have not been shown to be a major cause of chronic illnesses. After 10 years of intense clinical observation and study, it is increasingly unlikely that an infectious or immune process could cause serious health problems and remain undetected." -- This flies in the face of VA's recent presumptive service-connection of 9 endemic diseases for PG and Afghanistan veterans
  • IOM has found insufficient evidence on any PGW exposures -- obviously outdated and now false
  • Suggestions that GWI is the same as occurs after every war -- this is a myth scientifically refuted long ago
  • Most Gulf War health issues are diagnosable -- this stands in direct contradiction to IOM's GW Vol. 8, which finds 250,000 with chronic multi-symptom illness
  • GWI doesn't exist -- another myth, exploded by science and publicized by both RAC-GWVI and IOM
  • The falsehood that GWI is really one of 7 conditions:  FM, CFS, IBS, PTSD, Depression, Anxiety Disorder, Headache
  • No unusual risk of ALS -- Patently false
  • OP chemical warfare agents cause symptoms that are virtually identical to those caused by OP pesticides.  -- False

To keep this VHI -- which angered the entire GWI community when it was first released in 1998 and again in 2001/2001 -- on the VA website irrefutably demonstrates that VA continues to hold these flawed beliefs as current, accurate, and meaningful for VA and other healthcare providers. 
 
To make this more personal, can you imagine how insulted you would feel if you went to your doctor with a very real set of debilitating health symptoms, yet your doctor spent the entire appointment trying solely to "reassure" you as is carefully and extensively advised in VA's Gulf War VHI?
 
To keep this VHI on the VA website is not only a disservice to Gulf War veterans and their health care providers, but a slap in the face of every committee, researcher, and veteran who rightly called for its removal.
 
It should go without saying, but having such very bad information actively being provided by VA is worse than having no information at all.
 
What will it take for VA to listen and finally remove this highly flawed VHI as has been repeatedly recommended?  Please advise me.
 
Anthony Hardie
Madison, Wis.
 
 
----------------
 
On Mon, Feb 28, 2011 at 2:48 PM, Peters, Jeff <Jeff.Peters@va.gov> wrote:
 
Hi Tori,
 
I had a question today about the new VHI I did know the answer to and wanted your help.  I am looping Anthony Hardie, who asked the question, into the conversation.  Regarding the new GW VHI how did we construct the education program so it was more relevant to the 1990-1991 GW Cohort?  Thanks Tori,
 
jeff
 
Jeffrey Peters
Special Assistant
Office of the Secretary
Department of Veteran Affairs
202.461.4814
jeff.peters@va.gov

Thursday, March 17, 2011

CDMRP-Funded Mitochondrial Dysfunction GWI Study Recruiting in Atlanta, Ga.

Study Recruitment Material - Mechanisms of Mitochondrial Dysfunction in Gulf War Syndrome
Funding: DOD, GW080138
Principal Investigator: John Shoffner, M.D.

Study Rationale:

Gulf War syndrome (GWS) is associated with increased incidences of amyotrophic lateral sclerosis, pain syndromes, muscle complaints that include fatigue and myalgias, as well as other neurological symptoms. Approximately 100,000 individuals of the 700,000 veterans deployed in 19901991 Gulf War have medical complaints consistent with GWS. Clinical manifestations are similar to those identified in Chronic Fatigue Syndrome (CFS). Abnormalities in the part of the cell known as mitochondria have been delineated in GWS and CFS. We propose that GWS is determined by a complex interaction of variables that impair mitochondrial function that include genetic susceptibility, pre-Gulf War exposures, Gulf War associated exposures, and aging. This study will be the first comprehensive investigation of mitochondrial function in GWS. Our objective is to establish the cause for symptoms in affected veterans, develop testing that can more easily identify GWS, and ultimately develop treatment protocols for GWS.

The mitochondria have many functions that include changing the foods we eat into a usable form of energy known as ATP (adenosine triphosphate). All the cells of our body use this energy to run the biochemical reactions that allow our cells to function properly. Hence, the mitochondria act as tiny power plants inside of every cell. These power plants also utilize about 95% of the oxygen that we breathe. When the energy (ATP) is produced at normal levels, the cells function normally. When the energy (ATP) is reduced, the cells develop a variety of problems (analogous to a city during a brown out where energy dependent functions begin to fail). The central nervous system and muscle are often affected. These diseases can have their onset at any age and can even be triggered by exposure to certain chemicals and drug exposures. Multiple lines of evidence from the literature and from patients studied in our laboratory suggest that the mitochondria are not functioning properly in GWS and in CFS. Hence, detailed investigation of mitochondrial dysfunction in GWS is a priority.

Over the last two decades, our group has been dedicated to working with patients with mitochondrial defects. Over the years, we described many inherited mutations and biochemical defects that impair mitochondrial function. Our proposal is unique in that we integrate a variety of specialized laboratory techniques that characterize mitochondrial function into a comprehensive investigation. Our proposal is designed to characterize mitochondrial function in 50 veterans with GWS using blood and skin cells.

We will be investigating the skin and blood cells by characterizing precisely how mitochondria are working through detailed investigation of mitochondrial enzyme function, of mitochondria within living cells, of mitochondrial proteins, and of mitochondrial genes.

  • Please review the consent form for the study for a complete discussion of the study procedures and risks.
  • Participation in the study will take approximately 1.5-2.0 hours of your time.
  • The procedures performed during this visit are a clinical evaluation by Dr. Shoffner, drawing blood, and a small skin biopsy from the arm.
  • Once again the consent form discusses the study and the procedures in detail.
  • Dr. Shoffner will answer your questions about the study.

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MORE INFORMATION

Tuesday, March 15, 2011

VA Issues New FAST Letter on Iraq, Afghanistan, Gulf War Claims

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DEPARTMENT OF VETERANS AFFAIRS

Veterans Benefits Administration

Washington, D.C. 20420

March 15, 2011

Director (00/21)

All VBA Regional Offices and Centers Fast Letter 11-09

SUBJ: Procedures for Rating Infectious Diseases Presumed to Be Related to Gulf War, Iraq, and Afghanistan Service under 38 CFR § 3.317(c).

Purpose

This letter provides guidance on rating disability and death claims for service connection based upon specified infectious diseases that are presumed to be related to Gulf War, Iraq, and Afghanistan service.

Gulf War Presumptive Infectious Diseases

38 CFR § 3.317(c) was revised effective September 29, 2010. The revised regulation provides for establishing service connection on a presumptive basis for the following infectious diseases: Brucellosis, Campylobacter jejuni, Coxiella burnetii (Q fever), Malaria, Mycobacterium tuberculosis, Nontyphoid Salmonella, Shigella, Visceral leishmaniasis, and West Nile virus.

A new special issue (Gulf War Presumptive) is added to RBA2000 as part of the February 26-27, 2011, weekend installation. Each of the specified infectious diseases was added to RBA2000 as a special issue basis for the Gulf War Presumptive special issue. Please see enclosures 1 and 2 for instructions on when and how to use the new Special Issue and Special Issue Basis.

Questions

E-mail questions regarding this letter to: VAVBAWAS/CO/215/RBA2000.

/S/

Thomas J. Murphy

Director

Compensation and Pension Service

Enclosure 1 – Rating Decision Procedures

Enclosure 2 – Rating Decision Analysis Text

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Enclosure 1 – Rating Decision Procedures

Gulf War Presumptive Infectious Diseases

Field users will utilize the “Gulf War Presumptive” Special Issue and the appropriate Special Issue Basis when rating the specified infectious diseases claimed as presumptively due to Gulf War service. RBA2000 will generate proper text for all grants and for most denials. However, when service connection is denied as not established by presumption and when service connection for the cause of death is denied, the field user must manually edit the RBA2000-generated text. The field user must always edit the generated text (as appropriate) so that it is claim specific and fully explains the decision to the claimant.

Note: When multiple special issues apply to a claim, the Gulf War Presumptive special issue must be added last to ensure proper text generation. For example, if the Veteran is also an ex-prisoner of war, select the POW Special Issue and Special Issue Basis before selecting the Gulf War Presumptive Special Issue to generate the POW text first. This ensures all appropriate text is included in the narrative.

Rating Decision Procedures – Live Service Connection

When rating one of the specified infectious diseases claimed as due to Gulf War service, the field user must select “Gulf War Presumptive” from the drop-down Special Issue Information List on the Enter Disability Ratings screen as shown in the screenshot below.

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Once this entry has been selected, the Special Issue Basis field is enabled, and the field user must select the appropriate infectious disease from the drop-down list as shown in the screenshot below.

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After completing all entries, click the Accept button to generate the text (an additional text selection box may appear depending upon the decision entered, but that is the same functionality as currently exists).

For all grants and denials of service connection (other than a denial as not established by presumption), the generated text should be correct and ready for the field user to customize for the specific claim that is being rated.

For a denial of service connection as not established by presumption, the generated analysis text must be deleted and replaced with the appropriate text from Enclosure 2. The “Issue” text and “Decision” text should be correct but must still be reviewed and edited, as necessary.

The Analysis text will vary based upon the reason(s) for the denial. There is a general paragraph that must be used for all issues and then one or more specific denial reason paragraphs must be added based upon the denial reason(s). Please see Enclosure 2 for the general paragraph and the specific denial reason paragraphs. Note that these paragraphs require the field user to enter information such as the disability name, date, etiology, etc.

Specific denial paragraphs are available for the following reasons:

  • All Other Conditions – Not Within 1 Year
  • Illness Not Chronic
  • Less Than 10 Percent Disabling
  • Malaria - Not Within Time Period

· No Diagnosis

  • No Nexus
  • No Qualifying Period Of Service
  • Not SC

· Other Etiology

  • Supervening Condition Or Event
  • Willful Misconduct

Rating Decision Procedures – Service Connection for Cause of Death

When completing a cause of death rating claimed as due to infectious disease under 38 CFR § 3.317(c), the field user must select “Gulf War Presumptive” from the drop-down Special Issue Information List on the Enter Death Ratings screen as shown in the screenshot below.

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Once this entry has been selected, the Special Issue Information Basis field is enabled and the field user must select the appropriate infectious disease from the drop-down list as shown in the screenshot below.

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After completing all entries, click the Accept button and then the OK button to generate the text (an additional text selection box may appear depending upon the decision entered, but that is the same functionality as currently exists).

For all grants of service connection, the generated text should be correct and ready for the field user to customize for the specific claim that is being rated.

For a denial of service connection for the cause of death, the generated analysis text must be deleted and replaced with the appropriate text from Enclosure 2. The “Issue” text and “Decision” text should be correct but must still be reviewed and edited, as necessary.

The Analysis text will vary based upon the reason(s) for the denial. There is a general paragraph that must be used for all issues and then one or more specific denial paragraphs must be added based upon the denial reason(s). Please see Enclosure 2 for the general paragraph and the specific denial reason paragraphs. Note that these paragraphs will require the field user to enter information such as the disability name, date, etiology, etc

Specific denial paragraphs are available for the following reasons:

· No Diagnosis

· No Nexus

· Not SC

.


Enclosure 2 – Rating Decision Analysis Text

Rating Decision Text – Live Service Connection

General denial paragraph for all issues of denial of service connection as not established by presumption:

Under the authority granted by 38 U.S.C. §§ 1117 and 1118, VA has determined that presumption of service connection may be established for certain infectious diseases based on active military, naval, or air service in the Southwest Asia theater of operations during the Persian Gulf War or a period of active military, naval, or air service in Afghanistan on or after September 19, 2001. These diseases include Brucellosis, Campylobacter jejuni, Coxiella burnetii (Q fever), Nontyphoid Salmonella, Shigella, and West Nile virus, which must become manifest to a degree of ten percent or more within 1 year from the date of separation from a qualifying period of service; Malaria, if the disease becomes manifest to a degree of ten percent or more within 1 year from the date of separation from a qualifying period of service or at a time when standard or accepted treatises indicate that the incubation period commenced during a qualifying period of service; and Visceral leishmaniasis and Mycobacterium tuberculosis, for which there is no time limit to become manifest to a degree of ten percent or more.

Text for specific denial reasons:

All Other Conditions – Not Within 1 Year

Service connection for {drop in claimed disability} is denied because there is affirmative evidence that the disease did not become manifest to a degree of ten percent or more within one year from the date of separation from a qualifying period of service.

Illness Not Chronic

The disability must have persisted for a period of at least six months. Presumptive service connection for {drop in claimed disability} is denied since this disability first manifested on {date} and lasted less than six months.

Less Than 10 Percent Disabling

Presumptive service connection for {drop in claimed disability} is denied because this disability has not become manifest to a degree of 10 percent or more disabling.

Malaria - Not Within Time Period

Service connection for malaria is denied because there is affirmative evidence that the disease did not become manifest to a degree of ten percent or more within one year from the date of separation from a qualifying period of service or at a time when standard or accepted treatises indicate that the incubation period commenced during a qualifying period of service.

No Diagnosis

Presumptive service connection for {drop in claimed disability} is denied because the evidence of record fails to establish a diagnosis for this disability.

No Nexus

The available scientific and medical evidence does not support the conclusion that {drop in claimed disability} is associated with the veteran’s active military, naval, or air service in the Southwest Asia theater of operations during the Persian Gulf War or a period of active military, naval, or air service on or after September 19, 2001, in Afghanistan.

No Qualifying Period Of Service

Presumptive service connection for {drop in claimed disability} is denied because the evidence of record reflects no qualifying period of service.

Not SC

Presumptive service connection for {drop in claimed disability} is denied since this disability was not incurred in or aggravated by active military, naval, or air service in the Southwest Asia theater of operations during the Persian Gulf War or on or after September 19, 2001, in Afghanistan.

Other Etiology

Service connection under this provision is precluded if there is affirmative evidence that the disability was unrelated to service in the Southwest Asia theater of operations during the Persian Gulf War or a period of active military, naval, or air service on or after September 19, 2001, in Afghanistan. Service connection for {drop in claimed disability} is denied because evidence establishes that this disability resulted from {enter etiology}.

Supervening Condition Or Event

Service connection is denied because there is affirmative evidence that {drop in claimed disability} was caused by a supervening condition or event that occurred between the veteran’s most recent departure from a qualifying period of service and the onset of the disease.

Willful Misconduct

Service connection is denied because there is affirmative evidence that {drop in claimed disability} is the result of the veteran’s own willful misconduct or the abuse of alcohol or drugs.

Rating Decision Text – Service Connection for Cause of Death

General denial paragraph for all issues of denial of service connection for the cause of death:

Under the authority granted by 38 U.S.C. §§ 1117 and 1118, VA has determined that presumption of service connection may be established for certain infectious diseases based on active military, naval, or air service in the Southwest Asia theater of operations during the Persian Gulf War or a period of active military, naval, or air service in Afghanistan on or after September 19, 2001. These diseases include Brucellosis, Campylobacter jejuni, Coxiella burnetii (Q fever), Nontyphoid Salmonella, Shigella, and West Nile virus, which must become manifest to a degree of ten percent or more within 1 year from the date of separation from a qualifying period of service; Malaria, if the disease becomes manifest to a degree of ten percent or more within 1 year from the date of separation from a qualifying period of service or at a time when standard or accepted treatises indicate that the incubation period commenced during a qualifying period of service; and Visceral leishmaniasis and Mycobacterium tuberculosis, for which there is no time limit to become manifest to a degree of ten percent or more.

Text for specific denial reasons:

No Diagnosis

Service connection for cause of death based on active military, naval, or air service in the Southwest Asia theater of operations during the Persian Gulf War, or a period of active military, naval, or air service on or after September 19, 2001, in Afghanistan, is denied. The evidence of record does not show diagnosis of a condition for which VA has found a positive association exists between service in Southwest Asia during certain periods and subsequent development of the condition.

No Nexus

Service connection for cause of death from {drop in Cause of Death} is denied because the available scientific and medical evidence does not support the conclusion that the cause of death is associated with active military, naval, or air service in the Southwest Asia theater of operations during the Persian Gulf War or a period of active military, naval, or air service on or after September 19, 2001, in Afghanistan.

Not SC

There is no basis in the available evidence of record to establish service connection for cause of death from {condition name}. This condition was not incurred in or aggravated by active military, naval, or air service in the Southwest Asia theater of operations during the Persian Gulf War or on or after September 19, 2001, in Afghanistan.

Monday, March 14, 2011

AFP: Pain Monitor, March 2011

PAIN MONITOR
March 2011

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Action of the Month: Ask 5 People you Know to Join APF Today
Beginning this month, APF will feature an Action of the Month to engage you and those in your community to SPEAK OUT for the rights of people with pain. Forward this message to five or more of your friends and family members and ask them to join APF. The larger our number, the greater our influence! More info>>

NEWS

Pain is Tough to Treat
Doctors were harder on themselves than patients were when it came to judging their ability to minimize the pain, discomfort, or disability caused by a condition. Only 37 percent of physicians thought they were "very" effective, though 60 percent more thought they were "somewhat" effective. But 79 percent of patients said their doctor helped to minimize their pain or discomfort.

FDA LogoRisk of Oral Birth Defects in Children Born to Mothers Taking Topiramate
New data suggest that topiramate (topamax) increases the risk for the birth defects cleft lip and cleft palate in babies born to women who use the medication during pregnancy, the U.S. Food and Drug Administration said today.

Healing the Hurt
Some hurts are forever. But now science is pushing back.

Adverse Effects Weigh Heavily in Patients’ Medication Decisions
Adverse effects hold greater sway than the magnitude of potential benefits on older patients’ willingness to take medications for primary prevention of cardiovascular disease, researchers found.

UN Drugs Board Decries Poor Access to Pain Relief
More than 80 percent of the world's people have insufficient or no access to pain relief medications and are suffering unnecessarily because of it.

hispanic guyArthritis Takes Varying Toll on Hispanics
Rates of arthritis vary among different Hispanic groups but the overall effects of the disease appear to be substantial across groups, according to an analysis of national CDC survey data.

Pain, Persistence, Family: Sickle Cell Disease
How do you live with a disease that can cause sudden episodes of extreme pain? How does a family manage the needs of a child with a chronic, untreatable illness? These are among the questions that people facing a diagnosis of sickle cell anemia have to answer.

The End of Ouch?
Historically, if people were not in immediate medical danger, their pain was considered an unfortunate side effect or a collateral consequence of solving a greater problem.

For Tendon Pain, Think Beyond the Needle
Two time-honored remedies for injured tendons seem to be falling on their faces in well-designed clinical trials.

back painBack Pain Has Been Around for 4 Million Years, Scientists Say
In findings presented in a talk at Cambridge University, researchers challenged the notion that a sedentary lifestyle is to blame for spine problems.

NSAID Use Tied to Men's Sexual Performance
The regular use of nonsteroidal anti-inflammatory drugs (NSAIDs) is associated with higher odds of erectile dysfunction, a cross-sectional study showed.



APF NEWS

Taking an Opioid? APF Unveils New Worksheets to Help
If you are prescribed an opioid for pain relief, there are many things you need to know. Two new handouts — Chronic Opioid Therapy: Preparing for Your Appointments and Opioid Dos and Don’ts to Help Avoid Problems will help you prepare for follow up medical appointments and give you tips for staying safe. Learn More >>

APF Releases Report on Cancer Pain
The American Pain Foundation (APF) is proud to release its report “Breakthrough Cancer Pain: Mending the break in the continuum of care.” This 24-page document builds upon our initial call to action released last fall.


APF ACTION NETWORK

10,000 Voices Campaign
The 10,000 Voices campaign needs you to add your voice to the Virtual Wall of Voices. Your stories of struggle, hope and inspiration will be used to illustrate the range of experiences with pain management in America and inspire others to overcome the barriers that they face in their pain journey.

SPEAK OUT for the Rights of People with Pain!

Great news from Nebraska! The National Hospice and Palliative Care Organization (NHPCO) recently announced that the Nebraska Hospice and Palliative Care Association’s Jennifer Eurek, CSW, also an AN leader for Nebraska, has been appointed as the Central Plains regional representative for the We Honor Veterans Campaign, a national Veterans awareness campaign! Please visit www.nehospice.org for more information.

Georgia’s AN team attended the 2011 Atlanta Summit on Prescription Drug Abuse. Ashley Mahoney (Georgia AN leader) testified at the meeting presenting the voice of a person living with pain who requires  pain medicine and uses it effectively and responsibly to manage her pain. For more about this meeting please visit this site

Announcing Two New APF State Leaders
Angie Gravois, RN, joins us from Mississippi. Angie is both a person with pain and the health care provider. Angie has been active in awareness campaigns, research, and education on issues of fibromyalgia, and other diseases causing chronic pain, as a health care professional, a patient, and an advocate.  

Zulma Pagan is a new leader from Puerto Rico. She is a person with pain who has been living with fibromyalgia for over 14 years. She is the founder and president of a fibromyalgia support group and has campaigned for increased visibility of fibromyalgia issues in policy, healthcare, and research within the U.S and in Latin American countries.


CONNECT

PainAid Online Support Community
PainAid provides chat rooms (regularly scheduled chats on different issues), discussion boards (threaded message boards on a broad variety of topics), and the Ask the Experts feature (pose questions to licensed health care professionals). PainAid is staffed by highly qualified volunteers with a range of backgrounds, all of whom either live with chronic pain or care for people who do. Visit PainAid for more information.

Voices of People with Pain
If you are a person with pain or know someone who lives with pain, we invite you to share your story. View others' stories or share your own.

Webinar and Teleconference Replays
All APF webinars and teleconferences are archived for on-demand viewing. Make sure to check out our chat transcripts and join us at PainAid for future daily and special chats. Sign up to receive notifications of future webinars and teleconferences.

Other ways to get involved in our efforts:


SPOTLIGHT ON PAIN

The American Pain Foundation “Spotlights” are educational campaigns that highlight specific pain conditions or populations of people that experience pain. Spotlights bring focus to an issue offering a variety of ways for people to learn more about the topic, gain support, and take action. Click here for more information about our spotlights.

Back Pain

Treating Back Pain
Tips for the best solutions and treatments. (Video)

Taking Short Breaks Alleviates Back Pain
Preventing back pain might be as easy as getting up from your chair and walking every couple of hours.

The Claim: Back Pain Runs in Families
Heavy lifting, overuse and middle age are some of the most familiar risk factors for lower back pain. But for many people, predicting a lifetime of lumbar trouble could be as simple as consulting the family tree.

Cancer Pain

One-Third of Cancer Patients on Opioids Suffer Cognitive Problems
About a third of cancer patients taking opioid painkillers experience cognitive problems such as confusion, disorientation and forgetfulness, a new study finds.

Fibromyalgia

Increased Risk for Death From Suicide and Accidents Seen in People with Fibromyalgia
Although patients with fibromyalgia are not at an overall increased risk for mortality, they are at greater risk for suicide and accidents, according to a large observational study presented at the annual meeting of the American College of Rheumatology.

Let's Talk Pain

Patients Unable to Simplify Medication Schedules Themselves
Few people were able to translate prescription instructions so that they minimized the number of times a day they had to take medication, researchers found.

Shingles

People with COPD May Have Risk of Shingles
Researchers suggest people with chronic obstructive pulmonary disease get shingles vaccine.

Yoga

Believe in the Power of Movement
An increasing number of studies emphasize the health benefits of physical activity. Yoga, an ancient practice aimed at achieving tranquility and increasing flexibility, muscle tone, balance and strength is rapidly becoming the activity of choice for a large number of people who suffer from rheumatoid arthritis and other autoimmune diseases.


SCIENCE & MEDICINE

Managing CSF Leaks During Spinal Cord Stimulation Trial
A cerebrospinal fluid leak can be a headache for anesthesiologists performing a spinal cord stimulator trial, not to mention a trigger for an excruciating post-meningeal puncture headache for the patient.

UC Davis Pain Research May Pave the Way to Understanding and Controlling Chronic Pain
Researchers at the University of California, Davis have discovered a “cross-talk” between two major biological pathways that involve pain. This research may pave the way to new approaches to understanding and controlling chronic pain.


COMPLEMENTARY MEDICINE

yogaposeAlternative Treatment Helps People with Chronic Back Pain
Non-aggressive therapy strengthens bad backs.


PROFESSIONAL TRAINING OPPORTUNITIES

Responsible Opioid Prescribing in the Era of REMS Dinner Dialogues Series
The interactive Dinner Dialogues series discusses critical thinking strategies to help you optimize analgesia and facilitate safe and appropriate use of opioid therapy in your practice. These independent medical education activities are sponsored by the American Pain Foundation (APF) and supported through an educational grant from Endo Pharmaceuticals. Click here to register today!

Social Work Fellowship in Palliative and End-of-Life Care
A postgraduate social work fellowship in palliative and end-of-life care is available through the Department of Pain Medicine and Palliative Care at Beth Israel Medical Center. The fellowship program provides a supervised experience in the multidimensional assessment and care of patients, in multiple practice sites (an inpatient pain, palliative care and hospice unit, inpatient consultation service and an ambulatory practice) at various points along the continuum of life-threatening illness. Fellows participate in interdisciplinary rounds, case discussions, didactic conferences and departmental meetings with the focus on multidimensional approaches to symptom management, palliative and end-of-life care.

Learning will be complemented by access to interdisciplinary experts and resources such as the departmental multimedia resource center where a broad range of educational materials is available. Designed to develop role models, leaders, and mentors, the social work fellowship was established with a grant from the Open Society Institute Project on Death in America through their Social Work Leadership Award and receives ongoing support through the Barbara Zirinsky Fund. The program is offered on a full-time basis for one year and includes stipend and benefits. Applications are currently being accepted and are available at this link: http://www.stoppain.org/for_professionals/content/information/training.asp

Deadline for completed applications is April 1, 2011 with fellowship year to begin in June 2011 or shortly thereafter.

Mayday Pain & Society Fellowship: A Media and Policy Initiative
The Mayday Fund, a New York City-based foundation dedicated to alleviating the incidence, degree, and consequence of human physical pain, is interested in providing new leaders in the pain field with tools that will enable them to reach the broader public.

The Mayday Pain & Society Fellowship: A Media and Policy Initiative is a fellowship program to train physicians, nurses, pharmacists, social workers, basic, translational and clinical scientists, policy experts and legal scholars in the pain management community to go beyond their own professional pursuits to become leaders and advocates for change in the pain field in the United States and Canada. The deadline for applying to the 2011-12 program is Wednesday, June 15, 2011. More info >>


EVENTS

Public

RSD/CRPS Awareness Quilt Project
An ongoing project to raise awareness about chronic pain conditions, especially RSD.  The organizers are gathering quilt squares to make a pain awareness quilt that will travel across the United States. For more information, visit the Facebook page.

April 28, 2011
Wounded Warrior Care- Rediscovering the Meaning of Healthcare in America Today
Washington, DC

March 18, 2011
RALLY for pain care in WA State

June 5, 2011
National Cancer Survivors Day

June 2-4, 2011
Amputee Coalition National Conference
Kansas City, MO

Professional

March 24-27, 2011
American Academy of Pain Medicine Annual Meeting
Washington, DC

April 28, 2011
RADARS System Annual Meeting
Bethesda, MD

May 19-21, 2011
American Pain Society
Austin, TX

June 2 - 5, 2011
53rd Annual Scientific Meeting American Headache Society
Washington, DC

Sept 7-10, 2011
American Society for Pain Management Nursing
Tucson, AZ

Sept 7-10, 2011
PainWeek
Las Vegas, NV

Sept 14-17
American Academy of Family Physicians Scientific Meeting
Orlando, FL

September 20 - 23, 2011
22nd Annual Clinical Meeting
American Academy of Pain Management
Exploring the Science Practicing The Art
Las Vegas, NV

For more events happening around the country or to submit an event of your own, please visit our Events page.


Thank you to our medical/science editor Robert Twillman, PhD.


The Pain Monitor is a monthly electronic publication of the American Pain Foundation. We want to keep you abreast of recent media attention given to topics that are related to pain care or living with pain. This information is provided for educational and information purposes only. Readers may wish to print the information and discuss it with their doctor. Always consult with health care providers before starting or changing any treatment. Above are links to news articles, feature stories and timely information that have come to our attention. Please pass them along to others who might benefit. We encourage you to send any comments you may have to the authors or publishers directly. Every voice counts when working towards improving pain care in our nation.

The American Pain Foundation is an independent, nonprofit organization that relies upon private donations to fund its programs, services and distribution of educational materials. There are millions of people who live with unrelieved chronic pain. If you can help, please make a donation to the American Pain Foundation. For other ways you can support APF’s work, please visit our website at www.painfoundation.org.

Sunday, March 13, 2011

Chris Kornkven: Continuing the Battle for Gulf War Veterans

Written By the Staff of the Congressionally Directed Medical Research Program (CDMRP)

Chris Kornkven

Chris Kornkven is a Gulf War veteran who, since his homecoming in 1991, has endured debilitating health effects from his military service. Chris noticed his symptoms-chronic fatigue, arthritis-like pain, and stiffness in his major joints, along with significant short-term memory problems and long-term memory retention-while he was still in the Gulf War zone. He assumed that these health problems were endemic to the Gulf area and that they would fade upon his return home, but he became concerned when they did not subside. In 1992, after hearing that other Gulf War veterans were reporting the same conditions, and that these conditions were persisting and not improving, Chris became active in veterans' health issues.

Chris remarks that, for the past almost 20 years, his joint pain has been a daily reminder of his military service. Ordinary movements-walking, climbing steps, kneeling, or playing with his children-keep him in the grip of pain. He reports that his fatigue is unrelenting and is not relieved by sleep. At times, sheer exhaustion overcomes him when he is at the wheel of his car, and he has had to pull over to the side of the road just to rest. His problems with memory have been as severe as his joint pain and fatigue. Chris admits, "Even simple tasks or appointments that should be easily remembered require compensating in some manner, either by taking considerable notes, as when I first returned [home], or in using a personal digital assistant, as I do these days. Although coaching and compensating have aided me, significant activities that I have been involved in are forgotten as if I never participated."

Concerns with how widespread health effects were within the Gulf War veteran community prompted Chris and fellow veterans to found the National Gulf War Resource Center, Inc. in 1995. The organization was created to provide a clearinghouse of information for fellow veterans, their family members, caregivers, or others involved with Gulf War veterans. Chris served as Interim President of the organization, then was elected national President serving from 1996 until 2001. In that capacity, Chris has provided numerous media interviews and has met with Congressional, Pentagon, and Veterans Affairs officials, veterans service organizations, as well as veterans and their families, striving to ensure that veterans receive the medical care they earned.

Knowing firsthand the devastating effects of Gulf War Illness, Chris is committed to finding ways of improving the quality of life for ill Gulf War veterans. In his search for answers, Chris has worked with the National Gulf War Resource Center, Inc., Gulf War Veterans of Wisconsin, Veterans of Modern Warfare, Veterans of Foreign Wars, Disabled American Veterans, and the Gulf War Illness Research Program, which is under the umbrella of the U.S. Department of Defense Congressionally Directed Medical Research Programs (CDMRP).

After years of working with veterans, Chris relishes the opportunity to have a seat at the table when discussing research projects as a Consumer Reviewer for CDMRP. "It gives me considerable satisfaction when reading through these projects the level of commitment from those submitting proposals. They truly are as interested in finding solutions to these medical problems as we have been, and our opinions as veterans are being heard."


Source:  Congressionally Directed Gulf War Illness Medical Research Program, http://cdmrp.army.mil/cwg/stories/2010/kornkven_profile.shtml

Photos and text used with permission of  Mr. Chris Kornkven.

Friday, March 11, 2011

Memory Builder Tool Available Online

Memory problems, including short-term and working memory deficits are among the most commonly reported neurologic symptoms among Gulf War veterans suffering from chronic multi-symptom illness (Gulf War Illness), multiple sclerosis (MS), fibromyalgia (FMS) and other neurologic disorders.

A great new memory building tool is now available online, courtesy of MS ActiveSource.

--Anthony Hardie

Thursday, March 10, 2011

Neurology Now: Fibromyalgia is a True Neurologic Disorder

Editor’s note:  Fibromyalgia is a very real neurologic condition that affects thousands of Gulf War veterans.  The federal VA has determined that Fibromyalgia is a presumptive condition for service-connected disability for Gulf War veterans.

--Anthony Hardie

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Neurology Now: September/October 2009 - Volume 5 - Issue 5 - p 29-32.  Feature.

 

Fibromyalgia: Is Fibromyalgia Real?

SHAW, GINA

Abstract

A growing body of information suggests fibromyalgia is a true neurologic disorder.

Like many of his colleagues, John Kissel, M.D., used to think that fibromyalgia wasn't a real condition. Dr. Kissel, a neurologist and the co-director of the MDA/ALS Center at Ohio State University, thought it was a wastebasket diagnosis-a dumping ground for malingering, drug-seeking patients with unexplained pain, fatigue, and depression.

Then he saw patients that began to change his mind. He still remembers one woman in her 40s, a professional trial attorney from Columbus, OH. She had developed debilitating fatigue and horrible muscle pain and tenderness about a month after getting over a mild case of the flu.

After performing a number of tests, I went in to speak with her and mentioned fibromyalgia, Dr. Kissel recalls. She asked, 'What's that?' I said, 'You haven't heard of fibromyalgia? People are talking about it all over the place.' She said to me, 'I work 14 hours a day as a trial attorney-I don't do outside reading.' She wasn't depressed. She was still working. But she had all the typical symptoms of fibromyalgia. That was a formative experience in my thinking about the condition.

Today, more and more neurologists are coming around to the idea that fibromyalgia is a real disorder, and one that should be managed, or at least co-managed, by neurologists who care for chronic pain-not only the rheumatologists who originally identified the condition some 100 years ago.

Neurologists have become more educated about the diagnosis and treatment of fibromyalgia. - LYNNE MATALLANA, FOUNDER OF THE NATIONAL FIBROMYALGIA ASSOCIATION

Fibromyalgia has long presented a puzzle for doctors. It's considered a syndrome-a collection of related symptoms and problems without an identifiable cause-rather than a disease. Those related symptoms include:

* Chronic widespread pain, often accompanied by numbness, tingling, and burning

* Multiple tender points throughout the body

* Severe fatigue

* Sleep problems

Pain networks in the brains of fibromyalgia patients seem to be more easily activated than in people without the disorder.

To be diagnosed with fibromyalgia, a person must have had widespread pain in all four quadrants of the body for at least three months, and tenderness or pain when pressure is applied in at least 11 of 18 identified tender points.

Fibromyalgia was originally thought to be a rheumatologic condition because-like diseases such as rheumatoid arthritis-it is characterized by musculoskeletal pain. But research has since shown that there are no abnormalities in the musculoskeletal system in people with fibromyalgia. Instead, the problem appears to lie in the pain processing pathways of our central nervous system-the bailiwick of neurologists. Today, both rheumatologists and neurologists treat fibromyalgia.

The National Fibromyalgia Association estimates that between three percent and six percent of the population has fibromyalgia-mostly women, but some men and children as well. However, with a flimsier body of research than many other chronic conditions and no blood test to diagnose the disorder, controversy has swirled around fibromyalgia for years. It's also easily confused with other conditions, such as rheumatoid arthritis and lupus (in fact, some patients have both).

Lynne Matallana, the founder and president of the National Fibromyalgia Association, originally saw a rheumatologist for her fibromyalgia. Recently she has also been seeing a neurologist to help with the overlapping conditions, such as migraines and restless leg syndrome, that also cause her distress.

Just like everyone with fibromyalgia, I have to deal with comorbid conditions that are often treated by neurologists, Matallana says. When I started experiencing insomnia and daytime sleepiness, for example, I was referred to a neurologist who specialized in sleep disorders. Unlike several years ago, neurologists have become more interested and educated about the diagnosis and treatment of fibromyalgia. As a patient this is extremely exciting because they bring a new perspective.

 

LONGSTANDING SKEPTICISM

In the past, there has been legitimate reason for skepticism about fibromyalgia, Dr. Kissel acknowledges. The majority of research in fibromyalgia was not adequate, he says. Studies would pick some parameter and look at it only in patients with fibromyalgia and sometimes in normal controls, without comparing them to people with other chronic pain conditions, patients with depression, or to patients with other muscle diseases.

What's more, some physicians tended to view it as a grab-bag condition, diagnosed only when the doctor couldn't find anything else. Patients would come in and say, 'I have muscle pain.' The doctor would do all kinds of tests-electromyography [a test for abnormal electrical activity in the muscles], blood work, muscle biopsies, and imaging, and if all that was negative, then voilĂ , it was fibromyalgia, he says.

But that's not the way you diagnose, Dr. Kissel stresses. It's as if someone came in with a classic migraine headache and you gave the patient scans, brainwave tests, and arteriograms [imaging of the blood vessels], and if you still didn't know what it was, you said they had migraine. You diagnose migraine by what patients tell you and the way they look in the exam room, and that's the way you diagnose fibromyalgia, too.

The fact that abnormalities don't show up on standard neurological tests like electromyelograms and nerve-conduction studies (tests that measure how fast electrical impulses travel between nerves) is not evidence that fibromyalgia doesn't exist, says John Farrar, M.D., Ph.D., a neurologist and pain specialist at the University of Pennsylvania School of Medicine. There may be a few people in the world who complain of [fibromyalgia] in order to get drugs and attention, but the number of real malingerers is relatively small. The patients I see have very real pain, and it's up to us as doctors to figure out what the underlying major contributors to that pain are.

It hasn't just been doctors who are skeptical of fibromyalgia-many patients have been, too. Just recently I saw two patients who had both been to the Cleveland Clinic previously. One was the wife of a physician. They had both been told that they had fibromyalgia but neither wanted to accept it, despite the fact that they had all the criteria, says Dr. Kissel. Probably three-quarters of the patients I now see with fibromyalgia have been diagnosed by another doctor, but neither the doctor nor the patient is satisfied with the diagnosis. They want another diagnosis that they think will be more treatable.

 

NEW CLUES FROM BRAIN RESEARCH

New and better research pointing to possible underlying causes of fibromyalgia seems to be winning over at least some of the skeptics. Using tools like functional MRI, which show the brain's response to pressure and heat stimuli, researchers have been able to measure how people with fibromyalgia process stimuli like pain and pressure. Some key differences have been discovered between fibromyalgia patients and those without the condition.

Researchers at the University of Michigan in Ann Arbor have found that patients with fibromyalgia have what's called a hyperexcitable nervous system. In other words, pain networks in their brains are more easily activated than people who don't have fibromyalgia. Other researchers have also found impairments in a specific brain region that helps to inhibit the body's response to pain among people with fibromyalgia.

So on the one hand, people with fibromyalgia process any somatic sensory information-for example, light to moderate pressure-as painful, which comes as the result of hyperexcitability in the central nervous system, says pain specialist Miroslav Backonja, M.D., a professor of neurology, anesthesiology, and rehabilitation medicine at the University of Wisconsin School of Medicine and Public Health. Making the problem even worse, the body's pain modulation fails to engage. The body's pain modulation system can help to dial down just how intensely we perceive a painful stimulus.

In this way, fibromyalgia is somewhat similar to epilepsy. There's hyperexcitability in the nervous system on the one hand, and a failure of inhibition on the other, Dr. Backonja says. Which helps explain why pregabalin-a medication that is used to control epilepsy-can also be used to relieve fibromyalgia pain.

Yunxia Wang, M.D., used to be a fibromyalgia-skeptical neurologist as well-until treating a patient with pregabalin helped to change her mind. Four or five years ago, a patient came to see me with a diagnosis of fibromyalgia, says Dr. Wang, a neurologist at the University of Kansas who says that about 15 percent of her practice now involves patients with fibromyalgia. She also had multiple sclerosis. While treating her for MS, I realized that she was using her steroid medication too much. She told me it was because of pain. I wondered if it was because of the fibromyalgia, so I added her on pregabalin without changing her MS treatment. For over a year and a half, she hasn't had an attack and she's doing much better with her pain. So a patient could have an underlying neurologic disease and also have fibromyalgia.

I think there's really been a shift, and the brain imaging is what's doing it, says Matallana. We're seeing changes in the brain in fibromyalgia, and finally the neurologists are saying, 'You're talking my talk. This is interesting and I don't want to be left out.'

Not all neurologists are embracing fibromyalgia, however. It's a difficult condition to take care of. The patients have chronic pain, they call a lot, and they tend to have a lot of comorbidities, says Dr. Kissel. Comorbidities are other conditions that exist alongside the main disorder-with fibromyalgia they often include depression, anxiety, headache, irritable bowel syndrome, chronic fatigue syndrome, lupus, and rheumatoid arthritis. They're very much like chronic headache patients in this regard.

Matallana agrees that the interest in fibromyalgia among neurologists at this point is largely among researchers, pain specialists, and those at academic centers. I don't think it's trickled down to the average neurologist in practice yet, she says. But that may change soon.

 

Same Stimulus, More Pain

These pictures show functional magnetic resonance imaging (fMRI) responses to pressure applied to the left thumb in patients with fibromyalgia versus those without. The chart shows that for fibromyalgia patients, low pressure produced a high pain level (red triangle); for those without fibromyalgia (blue square), similar pressure produced a low level of rated pain. The brain images show common regions of activation in fibromyalgia patients (red) who received low pressure versus non-patients (green) who received high pressure. The similar pain intensities produced by significantly less pressure in the patients resulted in overlapping areas (shown in yellow).

 

Figure. STIMULI RES...
Image Tools

 

OPTIONS FOR TREATMENT

But Dr. Backonja argues that neurologists, especially those who specialize in pain, have a responsibility to take fibromyalgia on. It would be scary and sad for our profession if mounting scientific information were ignored, he says. There's a growing body of information clearly pointing to this as a neurological disorder, and while we can't cure it, there is a pretty reasonable way to apply treatment strategies.

There are now three medications approved by the Food and Drug Administration (FDA) for the treatment of fibromyalgia. In addition to pregabalin, which was the first to gain approval, duloxetine and milnacipran can also be prescribed for fibromyalgia. Duloxetine is also approved for the treatment of depression, anxiety, and painful diabetic neuropathy; and milnacipran for the treatment of depression. Doctors may also prescribe low doses of antidepressants to boost serotonin levels, helping to improve sleep and relieve pain.

In addition to medication, the patient needs to be engaged in figuring out how to help him- or herself, says Dr. Farrar. This can include physical therapy, rehabilitative exercise, yoga, self-hypnosis, biofeedback-things that allow the brain to be retrained to help deal with the pain. None of these are right for everybody, of course. For example, some people prefer exercise therapy to yoga.

How successful are these treatments? For people initially diagnosed with fibromyalgia, Dr. Farrar says that the chances of neurologists being able to help make them at least somewhat better or manage their pain are high-about 75-to 90-percent. By the time someone comes to see a specialist, they have probably had some of the simpler therapies, so the likelihood may have gone down a bit. But we're always able to help people in some way. We work with the patient to focus on what works and what doesn't, helping them to manage their discomfort and disability.

More options are on the horizon, as scientists learn more about pain and the nervous system in general and fibromyalgia in particular. We're learning a lot more about nerve-related pain, and although there aren't any obvious pathways that are focused on fibromyalgia, there are still some new agents that I think will allow us to begin to treat patients for underlying abnormalities, says Dr. Farrar.

He predicts that the prospects for at least two or three additional therapies for fibromyalgia over the next 10 years are very good. That said, people shouldn't set their expectations too high, he says. I doubt we'll be able to get to the point where there is zero pain, but we can make it like arthritis-the pain is there, but people are functional and can do the things they need to do.

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Source: Neurology Now, http://journals.lww.com/neurologynow/Fulltext/2009/05050/Fibromyalgia__Is_Fibromyalgia_Real_.24.aspx 

New Resource for MS: “MS Active Source”

Editor’s Note:  MS is thought to be more prevalent in Gulf War veterans than other people.  Despite repeated calls for such research, VA officials have yet to conduct any studies on the prevalence of MS in Gulf War veterans.

MS ActiveSource provides many excellent tools for managing MS. 

Additionally, the tools may be of interest and value to other Gulf War veterans and those who care for them.

--Anthony Hardie

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MS ActiveSource is a place that offers information to support people living with multiple sclerosis.

Information on MS ActiveSource is updated to provide new ideas for living well and staying active. In short, it is a tool to help you take control of your MS. Here you can use any of your MS ActiveSource tools to build a personalized homepage or connect with a mentor or support.

Whether you are here to seek knowledge or support, MS ActiveSource can be a destination for many of your questions about living well with MS.

 

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Welcome to a place that’s completely devoted to helping you try to live better with your MS. Here you’ll find more ways to stay active, eat healthier, connect with others, and feel better about MS. Have a look.

Register today with MS Active Source and:

  • Receive a free fitness DVD
  • Share your favorite recipe
  • Find memory games and fitness tools
  • Speak with a mentor

Register

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Source:  MS ActiveSource, http://www.msactivesource.com/

Wednesday, March 9, 2011

USA Today: ALS disease affects bodies, not determination

Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, has affected well over one hundred Gulf War veterans.

According to USA Today article today:

About 40,000 people live with ALS in the USA. That number has grown higher as medical support has extended life expectancy after diagnosis from three years to four-six years, says Stanley Appel, director of the ALS Clinic at the Methodist Hospital in Houston.

Technology has made it possible for ALS patients to stay connected and have productive lives, Appel says.

Like Lester, Cathy Wolf of Katonah, N.Y., and Augie Nieto of Corona del Mar, Calif., are doing that.

Read the full article here:  http://yourlife.usatoday.com/health/medical/managingillness/story/2011/03/ALS-disease-affects-bodies-not-determination/44655194/1?csp=34news&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+usatoday-NewsTopStories+%28News+-+Top+Stories%29&utm_content=My+Yahoo

Tuesday, March 8, 2011

Neurology Now: Articles and Resources on Pain

Editor’s Note:  Chronic widespread pain has long been a commonly reported condition among veterans of the 1991 Gulf War.

And fibromyalgia, a chronic pain condition, is a presumptive condition for VA service-connection for Gulf War veterans.

The following articles from Neurology Now, a consumer-oriented publication for the American Academy of Neurology may be of interest to Gulf War veterans and those who care for them.

A subscription to Neurology Now is free.

--Anthony Hardie

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Resource Central

Neurology Now. 5(2):37-39, March/April 2009.  Where to go for more information on the topics discussed in this issue of Neurology Now and for a directory of patient advocacy organizations.

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More Than a Feeling

GORDON, DEBRA.  Neurology Now. 5(2):18-19,23-25, March/April 2009.  New approaches to diagnosing complex regional pain syndrome are redefining what was once thought of as mystery pain. For years, doctors have viewed some pain patients as having psychological or substance-abuse problems. But that is changing.

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Expressing Pain

Neurology Now. 4(2):40, March/April 2008.  Expressing pain, a drawing by Eliette Markhbein.

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Resource Central

Neurology Now. 4(2):37-39, March/April 2008.  Where to go for more information.

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On the Front Lines

TALAN, JAMIE.  Neurology Now. 4(2):33-34, March/April 2008.  The army's success in treating injuries in Iraq has led civilian doctors to adopt these new pain-management strategies.

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Neuropathy: Not Just Pain

Richardson, Eugene B.  Neurology Now. 4(2):9, March/April 2008.

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Your Questions Answered: MIGRAINE AND FACIAL PAIN

MATHEW, NINAN T.  Neurology Now. 3(6):33, November/December 2007.  Answers to your questions about Lewy body dementia, migraine and facial pain, progressive supranuclear palsy, and dysautonomia.

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Mindful Of Pain

HAUPT, JENNIFER.  Neurology Now. 3(6):20-23,27, November/December 2007.  In the fourth installment of our series on Innovative Therapies, we explore the ancient exercises of yoga and tai chi. Emerging evidence-and the experience of practitioners-suggest that these forms of meditation-in-motion can help you harness the mind-body connection to ease the pain of multiple sclerosis, peripheral neuropathy, and other conditions.