Legislative Update: Current Status of DoD Gulf War Illness Research Funding Remains Volatile

 

Written by Anthony Hardie, 91outcomes.com

(91outcomes.com) – Just like last year, monitoring Congressional appropriations actions for the FY11 peer reviewed Gulf War Illness (GWI) research program administered under the Congressionally Directed Medical Research Program (CDMRP) and efforts to ensure the program’s funding success remain highly challenging.

As of today, it appears that both House and Senate actions suggest final GWI CDMRP funding for FY11 might be at $8 million, the same level as FY10. However, it should be noted that the situation continues to change rapidly. As always there are no guarantees until the entire Congress sends a final bill to the President.

Continued careful monitoring, combined with veterans advocates and organizations at the ready to contact key members of Congress, will be required.

House

On Wednesday, December 8, 2010, the House narrowly passed by a vote of 212-206 a Continuing Resolution (CR) that provides -- with various unrelated exceptions -- continued FY11 appropriations at FY10 levels, through September 30, 2011.

Under the CR, funding for the GWI program administered by the CDMRP reportedly would be retained at the FY10 funding level of $8 million.

Thirty-five House Democrats sided with 171 House Republicans in voting against the CR, while Eight Democrats and eight Republicans did not vote. This deep division suggests that future prospects for a final omnibus appropriations bill after Senate and conference action may also be challenging.

Senate

The Senate appropriations committee’s FY11 Defense appropriations act report language, which provides detailed funding by line item, directs $8 million for the Peer Reviewed Gulf War Illness Research Program.

The funding was requested in a letter by Senators Sanders, Bond, Feingold, Kerry, Tester, Schumer, Leahy, Durbin, Burris, Brown, Boxer, Snowe, and Kohl.

The Senate bill passed out of committee on September 16, 2010 by an 18-12 vote. Like all the other FY11 appropriations bills, the defense appropriations bill was not considered by the full Senate. However, it may very well remain a guide for future Senate action as discussed below.

Under the report accompanying the Senate bill, total appropriations for the military medical research programs currently operated by the CDMRP would be $358 million. In addition to the GWI appropriation, $150 million would be designated for peer reviewed research on breast cancer, $10 million for ovarian cancer, $80 million for prostate cancer, $60 million for psychological health and traumatic brain injury (TBI), and $50 million for the multifaceted peer reviewed medical research program (PRMRP).

FUTURE PROSPECTS

It is currently expected that the Senate will combine the House’s CR into a Senate omnibus appropriations bill. Any action must be completed by the end of the current Congress on January 3, 2011.

Additionally, the FY11 National Defense Authorization Act (NDAA) remains an unknown variable in the legislative equation. It remains unclear whether or not the NDAA will pass before the current Congress ends and what impact, if any, an enacted NDAA might have on the CDMRP’s GWI research program.

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Looking Back at Last Year: Who to Call

Last year, retaining funding for the Gulf War Illness research program was, as usual, extremely challenging for the handful of veterans advocates and organizations involved.

Initially, the Senate version of the FY10 Defense Appropriations Act lumped Gulf War Illness under the Peer Reviewed Medical Research Program (PRMRP), a catch-all that included more than two dozen conditions including GWI and funded at just $50 million. While the PRMRP restricts research to the listed conditions, there is no guarantee that research will be funded for any particular condition from among those listed.

Initially, the House failed to include funding for the GWI program at all.

However, as the bill went back and forth between the House and Senate, advocacy efforts resulted in amendments to the final bills in both chambers and final FY10 GWI funding at $8 million.

A last minute save on October 1, 2009 by Sen. Bernie Sanders (I-Vt.) and four of his colleagues amended (SA 2559) the Senate’s bill to include an amendment that would have appropriated $12 million for the GWI program. Those Senators included Robert Byrd (D-W.Va.), Russ Feingold (D-Wis.), Dick Durbin (D-Ill.), and Sherrod Brown (D-Oh.).

And, a December 11, 2009 letter by Rep. Dennis Kucinich (D-Oh.) and 25 other Members of Congress called for the conference committee to fund the CDMRP’s GWI research program at the Senate’s $12 million level.

Ultimately, the conference committee set final funding for the FY10 GWI program at the original, lower House level of $8 million. Both the House and Senate agreed and the final Defense funding bill was enacted by the President.

GWI research supporters Sanders, Durbin, and Brown remain in the Senate.

However, Byrd died on June 28, 2010 and is being succeeded by former West Virginia Governor Joe Manchin (D-W.Va.). Feingold was defeated in the November 2010 election and is being succeeded by Ron Johnson (R-Wis.), a Tea Party favorite.

GWI research funding supporters who signed onto the December 2010 Kucinich letter included the following. Of the 21 who remain in Congress, only four are Republicans, who will hold the majority in the House beginning January 3, 2011.  

• Rep. Tammy Baldwin (D-Wis.)
• Rep. Shelley Berkley (D-Nev.)
• Rep. John Boccieri
• Rep. Corrine Brown (D-Fla.)
• Rep. Henry Brown, Veterans’ Affairs Health Subcommittee Ranking Member
• Rep. Dan Burton (R-Ind.)
• Rep. Steve Buyer, House Veterans’ Affairs Committee Ranking Member
• Rep. John Conyers, Jr. (D-Mich.)
• Rep. Bob Filner (D-Calif.), House Veterans’ Affairs Committee Chair
• Rep. Charlie Gonzalez (D-Tex.)
• Rep. Raul Grijalva (D-Ariz.)
• Rep. Luis Gutierrez (D-Ill.)
• Rep. John Hall
• Rep. Rush Holt (D-N.J.)
• Rep. Dennis Kucinich (D-Oh.)
• Rep. Steve LaTourette (D-Oh.)
• Rep. Frank LoBiondo (R-N.J.)
• Rep. Jim McGovern (D-Mass.)
• Rep. Michael Michaud (D-Maine), Veterans’ Affairs Health Subcommittee Chair
• Rep. Gwen Moore (D-Wis.)
• Rep. Collin Peterson (D-Minn.)
• Rep. Mike Quigley (D-Ill.)
• Rep. Janice Schakowsky (D-Ill.)
• Rep. Patrick Tiberi (R-Oh.)
• Rep. Timothy Walz (D-Minn.)
• Rep. Don Young (R-Alaska)

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FY11 PRMPR

PRMPR research areas in the Senate bill would include the 32 conditions listed below. Four that are particularly relevant to Gulf War veterans are highlighted. The House CR would retain the list the same as in FY10. It should be noted that the final outcome remains indeterminate.

1. amyotrophic lateral sclerosis (ALS),
2. autism,
3. blood cancer,
4. chronic fatigue syndrome,
5. chronic migraine and post-traumatic headache,
6. dental research,
7. drug abuse,
8. epidermolysis bullosa,
9. epilepsy,
10. fragile x syndrome,
11. inflammatory bowel disease,
12. interstitial cystitis,
13. kidney cancer,
14. lupus,
15. melanoma,
16. mesothelioma,
17. multiple sclerosis (MS),
18. neuroblastoma,
19. neurofibromatosis,
20. osteoporosis and related bone disease,
21. Paget's disease,
22. pancreatitis,
23. Parkinson's,
24. pediatric cancer,
25. pheochromocytoma,
26. polycystic kidney disease,
27. post-traumatic osteoarthritis,
28. scleroderma,
29. social work research,
30. tinnitus,
31. tuberous sclerosis complex, and
32. vision research.

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SOURCES:

§ FY11 House Continuing Resolution (CR) for combined FY11 appropriations: H.R. 3082 [Would fund GWIRP at $8 million]

§ Senate FY11 Defense Appropriations Act, S. 3800 [Would fund GWIRP at $8 million]

§ Senate FY11 Defense Appropriations Act Committee Report, S. Rpt 111-295 [Would fund GWIRP at $8 million]

§ FY10 National Defense Authorization Act (NDAA), PL 111-84 [Authorized GWIRP at $12 million]

§ FY10 Defense Appropriations Act Explanatory Statement (essentially the conference report), p. 367 [Funded GWIRP at $8 million]

Fibromyalgia News

Editor’s Note:  Fibromyalgia, a neurological condition with chronic widespread pain and other multiple, chronic symptoms, is a presumptive condition for Gulf War veterans.

Some scientists believe that Gulf War Illness is unique from fibromyalgia.  However, even if the two conditions are separate, they do not disagree that they may be closely related and may benefit from some of the same or similar treatments.

Below are some of the most recent new articles by, for and about people suffering from fibromyalgia.

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The Fatigue in Fibromyalgia: Not 'Normal Tiredness'.  About - News & Issues.  The fatigue experienced in fibromyalgia goes beyond "normal tiredness," according to research just published in the journal BMC Musculoskeletal Disorders. ...

The gender gap.  Boston Globe.  Women suffer disproportionately from irritable bowel syndrome, fibromyalgia, headaches (especially migraines), pain caused by damage to the nervous system, ...
See all stories on this topic »

A Downside to Tai Chi? None That I See.  New York Times.  The latest and perhaps best designed study was conducted among patients with debilitating fibromyalgia, a complex and poorly understood pain syndrome. ...
See all stories on this topic »

Yoga Can Ease the Chronic Pain of Fibromyalgia — You Web News .…  By youwb.  Fibromyalgia is a chronic pain disorder that affects up to 10 million Americans, most of them women. It was identified in 1816 by a Scottish physician, but wasn't officially recognized by the American Medical Association as an illness ...
You Web News youwb.com - http://www.youwb.com/

Denver Acupuncture Center: Treatments for Fibromyalgia.  Acupuncture is one of the many TCM or Traditional Chinese Medicine treatments that are known and have been proven to be an effective therapeutic method for.
ArticleSlash - Free Article Directory - http://www.articleslash.net/

Negative Emotions Increase Pain.  MedPage Today.  In a cohort study among 121 women -- 62 of whom were diagnosed with fibromyalgia -- pain induced by an electrical stimulus was more keenly felt after the ...
See all stories on this topic

Anger and Sadness Increase Pain in Women With and Without Fibromyalgia.  Arthritis Today.  By Jennifer Davis 9/28/10 Researchers who set out to understand the role emotions play in fibromyalgia pain may have ended up dispelling a myth – that women ...
See all stories on this topic »

Wrong & Right Gifts for Someone With Fibromyalgia & Chronic Fatigue Syndrome,  About.com: Health.  Have you ever gotten a gift that you couldn't use because of your fibromyalgia or chronic fatigue syndrome? I get these all the time -- mostly body washes ...
See all stories on this topic »

5 fibromyalgia pain relief tips | Chronic Pain Management.   codedergal.  Five chronic Pain Management Guidelines and Chronic Pain Management Information.
Chronic Pain Management - http://chronicpainmanagement.blognub.com/

Chronic Fatigue: XMRV Virus and Anti-Retroviral Drugs

Chronic Fatigue is a common symptom in Gulf War Illness; Chronic Fatigue Syndrome is a “Presumptive” condition for Gulf War veterans

Written by Cinda Crawford

(HealthMatterShow.com) - As reported 8/31/10 in Retrovirology, researchers are seeing some success in having XMRV retrovirus react to HIV Anti-retroviral drugs for CFS. (Sorry if the link will not work. It seems to be functioning hit or miss from their end, but the information is included below. Keep reading.)

Do their conclusions mean you should spend money to get tested for XMRV right now? Probably not. Do they mean that you should consider taking anti-retroviral drugs? Truly, no. Their conclusions are not that well-defined. Not yet.

Even so… no one can walk in someone else’s shoes to feel their desperation or fading hope, but truly this seems like a premature action to me. I urge you to wait for science to catch up with the news and expectations. We will eventually have a clear picture of XMRV, but unless you want to chase every possible scenario out there, it is more prudent to wait.

(See the abstract below.)

Abstract (provisional)

Background
XMRV (xenotropic murine leukemia virus-related virus) is the first known example of an exogenous gammaretrovirus that can infect humans. A limited number of reports suggest that XMRV is intrinsically resistant to many of the antiretroviral drugs used to treat HIV-1 infection, but is sensitive to a small subset of these inhibitors. In the present study, we used a novel marker transfer assay to directly compare the antiviral drug sensitivities of XMRV and HIV-1 under identical conditions in the same host cell type.

Results
We extend the findings of previous studies by showing that, in addition to AZT and tenofovir, XMRV and HIV-1 are equally sensitive to AZddA (3′-azido-2′,3′-dideoxyadenosine), AZddG (3′-azido-2′,3′-dideoxyguanosine) and adefovir. These results indicate that specific 3′-azido or acyclic nucleoside analog inhibitors of HIV-1 reverse transcriptase (RT) also block XMRV infection with comparable efficacy in vitro. Our data confirm that XMRV is highly resistant to the non-nucleoside RT inhibitors nevirapine and efavirenz and to inhibitors of HIV-1 protease. In addition, we show that the integrase inhibitors raltegravir and elvitegravir are active against XMRV, with EC50 values in the nanomolar range.

Conclusions
Our analysis demonstrates that XMRV exhibits a distinct pattern of nucleoside analog susceptibility that correlates with the structure of the pseudosugar moiety and that XMRV is sensitive to a broader range of antiretroviral drugs than has previously been reported. We suggest that the divergent drug sensitivity profiles of XMRV and HIV-1 are partially explained by specific amino acid differences in their respective protease, RT and integrase sequences. Our data provide a basis for choosing specific antiretroviral drugs for clinical studies in XMRV-infected patients.

Best wishes for your speedy recovery from CFS, Chronic Fatigue Syndrome,
Cinda Crawford, host of the Health Matters Show

Virus link to chronic fatigue studied

Editor’s note:  Chronic, debilitating fatigue is among the most commonly reported Gulf War Illness symptoms.  Chronic Fatigue Syndrome is a presumptive condition for VA service-connected disability claims.

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Written by the Associated Press

(WASHINGTON – AP)  — A U.S. government study has uncovered a family of mouse viruses in some people with chronic fatigue syndrome, raising still more questions about whether an infection may play a role in the complicated illness.

Monday's study does not prove that having any of these viruses causes harm, stressed co-author Dr. Harvey Alter of the National Institutes of Health.

But it strengthens suspicions, and the government has additional research underway to determine if the link is real or not.

Meanwhile, a group of French and Canadian scientists said it's time to test whether antiviral medications like those used against HIV might treat at least some people with chronic fatigue.

The virus connection first made headlines last fall when Nevada researchers reported finding a specific type, named XMRV, in the blood of two-thirds of the 101 chronic fatigue patients they tested. But several other studies, including one from the Centers for Disease Control and Prevention, failed to find XMRV virus in patients, making researchers wonder if this was a false alarm.

Monday's study, published in Proceedings of the National Academy of Sciences, thickens the plot. This time, NIH and Food and Drug Administration scientists examined the blood of 37 chronic fatigue patients and again didn't find XMRV — but instead they found a group of closely related bugs named MLV-related viruses in 86% of the cases.

Testing of 44 healthy blood donors, in contrast, found evidence of those viruses in nearly 7%.

Various viruses have been linked to chronic fatigue over the years only to fall by the wayside as potential culprits in the mysterious illness thought to afflict about 1 million Americans. It's characterized by at least six months of severe fatigue, impaired memory and other symptoms, but there's no test for it and no specific treatment.

These MLV, or "murine leukemia-related viruses," are known to cause some cancers in mice, and the XMRV relative has been found in some human prostate tumors, too.

But there's no easy way to test for it, meaning studies of a link at this point must be in research labs, not doctors' offices, FDA and NIH researchers said Monday.

No one knows how people become infected, but Alter said a major study is underway to see if there's any evidence of transmission through blood.

In the meantime, federal regulations require that blood donors be in good health, said FDA's Dr. Hira Nakhasi.

Establishing "Disability" for Social Security Claimants with Fibromyalgia or Chronic Fatigue Syndrome

 

Editor’s Note:  Chronic Fatigue Syndrome and Fibromyalgia, a chronic pain condition, are presumptive conditions for VA service-connected disability purposes.  Veterans who receive VA service-connected disability compensation may also be able to receive Social Security benefits, as this article discusses.

Article provided by Jeffrey A. Rabin & Asoc.,  www.rabinsslaw.com

(24-7PressRelease) - Social Security disability benefits are often the ultimate safety net for persons suffering from medical impairments that make it impossible for them to work. For many people, however, struggling through the Social Security Administration's bureaucracy is frustrating, confusing and slow. For people suffering from conditions such as Fibromyalgia and Chronic Fatigue Syndrome, the requirements of the Social Security Act can become overwhelming. This article will explain and simplify in general terms the requirements of the Social Security disability program and describe the application and appeals process.

Two Different Programs - SSDI and SSI
There are two programs under the Social Security Act providing benefits for persons who are unable to work. The first is the Social Security Disability Insurance (SSDI) program found in Title II of the Social Security Act. The second is the Supplemental Security Income program contained in Title XVI of the Social Security Act. The medical test for both programs is identical. The differences are in the non-medical eligibility requirements.

Non-Medical Requirements
SSDI benefits are paid to totally disabled individuals who have worked and paid into the Social Security system with the FICA taxes that are deducted from paychecks. These FICA taxes are analogous to insurance premiums paid for automobile, homeowners or other private insurance. The FICA payments, which are matched by employers, buy coverage under the Social Security Retirement, Disability and Medicare programs. For SSDI, there are two requirements: a worker must have worked and paid FICA taxes for at least 40 quarters lifetime (10 years) and, also 20 quarters had to have been paid in during the ten years prior to the date of becoming totally disabled. For example, a 40 year-old Claimant who became disabled in 2003 would have had to have worked and paid FICA taxes for at least 10 years during his lifetime, and for at least 5 years between 1992 and 2002.

If approved for SSDI the Social Security Administration pays a monthly benefit based upon how much was earned and paid into the Social Security system. Benefits are also paid to dependent children who are under 16 years old, or who are under 18 years old and still in high school. Medicare eligibility begins twenty-nine months after the onset date of total disability.

The SSI program requires that an individual be totally disabled and "indigent." "Indigent" basically means that a single Claimant has little or no income and less than $2,000.00 in non-exempt assets. A home and furniture are not counted. One car is exempt. Bank accounts, IRAs, profit sharing plans, cash value life insurance and similar assets are all included in determining assets, even if penalties and taxes would be incurred if the asset were converted to cash. In addition, a spouse's assets and income are "deemed" to the disabled Claimant - this deeming rule wreaks havoc on many disabled persons, particularly the stay-at-home parent.

A disabled person receiving SSI will also be eligible for food stamps and a Medicaid card from the state.

The Social Security disability program is designed to pay benefits to claimants suffering from medical problems causing symptoms so severe that it becomes impossible to sustain function at any type of work. Issues of employability, job existence, insurability and location or desirability of alternative work will not be considered, although age and education are often important factors. The fact that a person can not do the work performed in the past is usually not determinative. This is a medical program that focuses upon medically proven symptoms and their impact on the ability to perform work activities.

Therefore, the focus in on function, not on diagnosis; SSA often admits that Claimants have medical problems and are "impaired," but denies that they are "totally disabled." The debate is over what the Claimant can "do" despite the medical problems.

The Social Security Administration's Regulations require determination of disability be based upon on "objective proof" of both the medical problem and of the severity of the symptoms. "Objective proof" means the findings contained in medical tests that are not dependent on the patient's subjective responses. A MRI, a cardiac treadmill test, an x-ray and a pulmonary function test are all "objective" tests. Asking a patient if she is in pain is "subjective." In Fibromyalgia and CFS claims, it is often difficult to objectively prove either the existence of the disease, or the severity of the symptoms. This has caused many claims based upon these conditions to be denied - especially at the first two levels of review.

The focus in all disability claims is upon the medical evidence, i.e. the treating physicians' clinical findings, office notes, reports, and medical test results. This evidence is primary and is often more important than the testimony of the Claimant. While a Claimant's description of the impact on daily activities, social functioning and concentration must be considered by SSA, the content of the medical documentation is the most important source of evidence in deciding the claim.

In Fibromyalgia claims the clinical notes and a report of the treating rheumatologist are most important. A 1996 decision by the Seventh Circuit Court of Appeals established that a rheumatologist is the primary source for proof of this disease. Office notes from the rheumatologist should consistently document the positive findings for the tender points which are diagnostic for this disease. In addition, the patient should be complaining at each office visit of the fatigue and pain that are consistent with this condition. A report that establishes that all other causes for the symptoms have been ruled out helps establish the existence of the disease.

Since the extent of fatigue and pain can not be measured, consistency of complaints in the various medical records will be important. The use of pain medications, even if just for trial periods is an important consideration in evaluating the severity of pain. Use of mild analgesics indicates less severe symptoms; prescription of stronger narcotics indicates that the treating specialist felt the pain problems more severe. Also, documentation by the physicians of concentration impairments, and the inability to perform routine daily activities such as housework, shopping, and social functioning, are also factors considered by Social Security Administration decision makers.

Chronic Fatigue Syndrome claims have been made clearer by the adoption of Social Security Ruling 99-2p. This Ruling finally acknowledges that CFS is a medically determinable impairment and describes the various findings that can establish the diagnosis. This Ruling is quite useful and can be found at the SSA's website, www.ssa.gov. Generally, the focus is on a longitudinal view of the medical evidence and the extent and nature of the treatment provided by the various physicians. The clinical findings and summaries of the patient's complaints in the office notes are critical in terms of establishing the existence of a medical impairment. As to whether the symptoms are totally disabling, SSA will consider the medical opinions, as well as the statements of the Claimant and third parties, as in any other disability claim.

Claimants who suffer from depression should also seek treatment from a mental health professional. Whether the depression is a symptom of the disease, or results from the significant impact on a Claimant's lifestyle, or is a separate disabling medical condition, the treatment notes and histories often lend credibility to the claim. However, SSA will generally not give significant weight to depression treated by a family doctor or social worker - emphasis will always be given to the records and reports of an M.D. psychiatrist or Ph.D. psychologist. Depression does not usually negate the existence of other underlying impairments but instead confirms the severity of their impact. On occasion, this diagnosis provides an alternative theory for an Administrative Law Judge who wishes to award benefits but will not approve a claim based on CFS or Fibromyalgia.

The Application Process
There are multiple levels of review of an application filed under the Social Security Act. In an effort to increase productivity, and decrease processing time, the Social Security Administration is testing different review models across the country. This article will describe the basic system which is still in place throughout most of the United States.

A claim is initiated by filing an application. This can be done over the telephone, on SSA's web site at www.ssa.gov (for SSDI claims only) or, preferably, in person at the local Social Security Administration District Office. The application will require a list of all of the jobs performed during the last 15 years, a list of all medical providers, a list of current medications, names and dates of all prior marriages and divorces, and a copy of the Claimant's birth certificate. Generally our practice is to recommend as much be done with Social Security face to face at the District Offices - this decreases the chance for errors. At the time of this writing, only SSDI claims can be filed over SSA's web site.

After the application is filed, the Social Security Administration will send the file to a Disability Determination Service (DDS) administered by that State. Each state has a contract with SSA to perform the first two levels of review. At the DDS the file will be assigned to an adjudicator who will be responsible for gathering medical documentation, getting any additional information from the Claimant, arranging for consultative examinations and obtaining medical and vocational opinions from the DDS's internal experts. A written decision is issued in about 90 days on average, although the time frame can vary widely. Historically only about 36% of claims are paid at this level.

If denied, the second step is the filing of a Request for Reconsideration at the SSA District Office. A Claimant is allowed 60 days from the date of the initial denial to file this appeal, although there is usually little to gain by waiting. The Request for Reconsideration is also processed by the state DDS. Historically only about 17% of claims are approved at this level and SSA is testing elimination of this step.

The third level of review, for those claims denied at Reconsideration, is the hearing before the Administrative Law Judge (ALJ). These are informal administrative hearings held before independent judges who hear testimony, review the medical records and issue written decisions. While progress had been made in reducing the backlog in setting hearing dates, the delays have been increasing once more. Time frames vary widely across the nation, many hearing offices now take at least twelve months from the date the Request for Hearing is filed to set a hearing date.

The hearing is critical to the review process because it is the only time that a Claimant has the opportunity to see, and talk to, the decision maker. Up until this time all decisions are based upon paper, i.e. medical reports and written questionnaires. This is the only time in the process where the decision maker gets to see and question the Claimant. That face to face observation is critical and in this author's experience is one of the factors causing ALJs to reverse many reconsideration denials.

While all Social Security cases first focus on medical proof, the testimony at an administrative law judge hearing may tip the scale in favor of a sympathetic and credible Claimant. It is important that a Claimant fully explain the limitations and the effects of the disease on their daily activities. Testimony, which is consistent with the medical evidence and credible, can persuade a Social Security judge to award benefits in a claim based upon Fibromyalgia or CFS.

The final two steps in the review process are the Appeals Council, and if unsuccessful, the United States District Court. These reviews are primarily based upon the medical evidence and testimony from the ALJ hearing. Since there is no additional testimony, and very little additional medical evidence can be supplied, these two levels of review are helpful in only a small percentage of claims. The backlog at the Appeals Council is now almost two years.

NOTE: SSA has begun testing different application processes in different parts of the nation. Some Claimants will not have a reconsideration stage; some will not have Appeals Council review. All Claimants will have an opportunity for an Administrative Law Judge hearing.

Representation
This Social Security disability application and appeals process was designed so that Claimants are not required to obtain representation. However, people with representation have much higher success rates. Familiarity with SSA's Regulations, Rulings, the federal caselaw interpreting the Act, and with SSA's internal guidelines called the POMS and HALLEX, help guide preparation of a claim. Representatives do not have to be licensed attorneys and there are paralegals and other non-attorneys who do provide representation.

This author's strong preference is to become involved in a claim as early in the process as possible. The earlier a Claimant understands the issues in her particular situation, and the earlier the review of the existing available medical proof, the greater the chance the assistance will be granted at some point in the process. In addition, care needs to be exercised in the completion of many of the early questionnaires sent by the DDS adjudicators - many answers on these forms end up being twisted and serving as the basis for denials by adjudicators and ALJs.

Almost all attorneys who focus in this area of the law will agree to representation on a contingency fee basis - that means that fees are only awarded in the event of a favorable outcome. In addition, the Social Security Administration always retains the right to review attorney fees.

Conclusion
Many claims for SSDI and SSI benefits are approved for persons with Fibromyalgia and Chronic Fatigue Syndrome. Claimants must have the support of their treating specialists - especially the rheumatologist and/or pain specialist and must maintain good communication regarding their symptoms and limitations.

If depression has become an issue then treatment with either a Ph.D. psychologist or M.D. psychiatrist is important. The earlier a Claimant obtains experienced representation the greater the chance for success, and the less stressful the battle through the various levels of appeal and review. Perseverance will prevail and disabled persons can obtain this much needed assistance.

Nothing in this article is intended to be specific legal advice or to create an actual or implied attorney-client relationship. This article has been a brief summary of the basic law and persons seeking benefits should contact experienced representatives for advice upon which they can rely. Hopefully, however, this brief analysis will provide some insight into the disability system.

Clinical depression often blamed before diagnosis of real disease

Fibromyalgia, Chronic Fatigue common in Gulf War veterans

Written by Vivian Song

(HealthZone.ca) - When Joanne Saraiva went to her doctor for her chronic pain and fatigue and debilitating mental fog, the physician chalked it up to depression and sent her to a psychiatrist.

She was just depressed, her doctor said, and had taken on too much. After all, Saraiva, now 50, had changed jobs, was raising two boys and had suffered a loss in the family.

Desperate to get better and resume her normal life as a busy, active mom and career woman, Saraiva complied and was popping anti-depressants to treat her degenerating health. She was constantly exhausted and was always in pain.

“It was like someone took a bat and beat me up all over,” Saraiva says in her Brampton home. “Like I was walking on nerve endings.”

While she could endure the pain, it was the cognitive decline that most alarmed her.

“It felt like someone was pulling down the blinds on the window,” she says. “My energy, concentration, ability to process information, word retrieval and perception were all going.”

But after a year of visits, the psychiatrist looked at her and confirmed what, deep down, Saraiva always knew.

She wasn’t depressed. There was something else more insidious at play.

“I know my own body. I wasn’t sad over anything. And in fact, I work better under stress, that’s who I am,” she says.

Misdiagnosing illnesses like fibromyalgia, myalgic encephalomyelitis or chronic fatigue syndrome, and multiple chemical sensitivities as psychiatric problems and figments of the imagination is common practice among today’s doctors who lack a general understanding, says Dr. Riina Bray.

“We have to educate physicians so that they don’t blow patients off as looney,” says the medical director of the Environmental Health Clinic at Women’s College Hospital. “That’s probably the easiest way out, to blow them off as psychiatric issues.”

But there’s a huge difference between people who suffer from depression, and those who suffer from legitimate medical conditions, adds Alison Bested, a hematological pathologist and specialist at the same clinic.

People who are depressed, for instance, are so low emotionally they can find little inertia to get going and have lost all enjoyment of life, Bested says. Meanwhile, those who suffer from one or a combination of the three illnesses live for their good days, she says.

“On a good day, these people are off to the races.”

It would take years for Saraiva to get an official diagnosis and understand what was wrong with her. She suffers from chronic fatigue syndrome, characterized by pathological exhaustion that cannot be reversed by rest — she’s incapable of deep, restorative sleep. She also suffers from fibromyalgia, chronic pain throughout her body. Both can be traced back to a series of viral infections that left her bed-ridden, a common trigger. With these illnesses, brain fog is also common.

Saraiva was misjudging the stairs and would draw complete blanks at work where she multi-tasked as a senior clerical worker. Suddenly, simple tasks eluded her: She couldn’t remember how to put people on hold, and was reduced to writing cheat sheets on how to log on to the computer she’d been using for years.

For the 440,000 Ontarians who suffer from either one or a combination of these illnesses, getting an official diagnosis is often half the battle, said Jeanne Samonas, president of the Myalgic Encephalomyelitis Association of Ontario.

“It blows your mind that that number of people — the size of a city — are not getting diagnoses or treatments,” Samosas says.

That’s because there are few specialists in Canada with the training to diagnose and treat the three illnesses, which often strike as a package deal. The Environmental Health Clinic at Women’s College Hospital in Toronto is one of two clinics in Canada — the other being in Nova Scotia — where patients can seek help.

“It’s a huge problem,” Bested says. “There are only a handful of doctors trained on the pathology of these illnesses and there’s virtually no ongoing research which is deeply needed.”

Twenty years ago not a word was written about these illnesses in textbooks, she says. Fibromyalgia, for example, was added in the World Health Organization’s International Classification of Diseases in 1992.

“Physicians my age and older haven’t had the education or training to diagnose these illnesses,” Bested, 56, says. “I learned about this because people were coming to me with the illness.”

Saraiva only got her official diagnosis after doing her own online research, which led her to the Toronto environmental clinic. She was put on a 10-month waiting list.

“Doctors didn’t know what to do with me,” Saraiva says. “I had to become my own advocate.”

During the waiting period, Saraiva battled her employer’s insurance company for long-term disability payments: Company doctors ordered her to go back on anti-depressants and join a gym. She was given a pedometre and had to clock 800 steps a week. They also treated her illnesses as a psychiatric, lifestyle choice, despite appeals from her own psychiatrist and doctor who wrote on her behalf.

Similarly, she was denied three times for Canadian Pension Plan disability benefits and had to take the case to a tribunal which ruled in her favour.

“We’re dealing with powerful, wealthy insurance companies who have a bottom line,” Samosas says. “A lot of people have had horrendous cases in court with CPP and fight for years.

A lot of that stems from the fact that fibromyalgia, chronic fatigue syndrome and Multiple Chemical Sensitivities aren’t recognized as chronic illnesses, Bested notes, and consequently receive no funding for research. Nor do they figure well in resident training.

“At the government level, they’re invisible.”

Yet last month, Canada became the first country in the world to ban blood donations from people diagnosed with chronic fatigue syndrome in the wake of groundbreaking study published in the prestigious journal Science, advocates point out. U.S. researchers discovered a human retrovirus, XMRV, that could be linked to CFS. The move was a precautionary measure as it’s feared the virus, which closely resembles the AIDS virus, could be transmitted through blood transfusions. Australia followed suite a few weeks later.

“We can’t get funding because we’re not considered a chronic illness, and yet they won’t take our blood,” Saraiva says.

In a rare public display, sufferers organized a rally at Queen’s Park May 12 to mark International ME/CFS & FM Awareness Day and appeal for a treatment centre.

According to the results of a 2005 Canadian Community Health Survey prepared by Statistics Canada, of 23 chronic health conditions, chronic fatigue, chemical sensitivities and fibromyalgia topped the list for unmet health care needs.

“After diagnosis that’s where it all ends for a lot of people,” Samonas says.

Saraiva is still looking for someone to treat her. She misses the woman she used to be: The woman who others called “supermom,” who jogged three times a week and was the go-to person at work whenever there was a problem.

“It’s time,” she says. “It’s time that we’re recognized and we get treatment and funding.

Shinseki's 'State of VA' Address Includes Gulf War Illness

Written by Anthony Hardie, 91outcomes

(91outcomes.blogspot.com - October 14, 2009) - Today's "State of VA" address delivered by U.S. Department of Veterans Affairs (VA) Secretary Eric "Ric" Shinseki included key comments for Gulf War veterans.  

The speech, presented as testimony before Congress, was wide ranging, pledging transparency, openness, and doing right by veterans. 

It also included key comments related to Gulf War Illness, including implying that the claims process will improve for the 175,000 to 210,000 veterans suffering from Gulf War Illness.  Shinseki also gave a warning about what will happen to current service members if the lessons of the Vietnam War and the 1991 Gulf War are not learned:

"A transformed VA will be a high-performing 21st century department, a different organization from the one that exists today.  Beyond the next five years, we're looking for new ways of thinking and acting. 

"We are asking why, 40 years after Agent Orange was last used in Vietnam, this Secretary had to adjudicate claims for service-connected disabilities that have now been determined presumptive. 

"And why, 20 years after Desert Storm, we are still debating the debilitating effects of whatever causes Gulf War Illness.

"If we do not stay attuned to the health needs of our returning veterans, 20 or 40 years from now, some future Secretary could be adjudicating presumptive disabilities from our ongoing conflicts. 

"We must do better, and we will."

Shinseki's speech noted new presumptive conditions for Agent Orange, bringing the total to 15 according to a Stars and Stripes article. 

To date, VA has only named three conditions related to Gulf War illness as presumptive, including fibromyalgia (FMS), chronic fatigue syndrome (CFS/ME), and irritable bowel syndrome (IBS), all thought to be closely related to Gulf War Illness (GWI).  Veterans diagnosed with both FMS and CFS/ME are compensated as if the two were a single condition.  

Gulf War veterans can also be compensated for an undiagnosed multi-symptom illness described by signs and symptoms noted by a physician.  However, according to the most recent VA data, less than 4,000 Gulf War veterans have been successful in gaining service connection for undiagnosed illness.

For all veterans, including those with service in the 1991 Gulf War, Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease is a presumptive condition for any period of military service, as is Multiple Sclerosis (MS) if the disease manifests no later than seven years following military service. 

Despite studies showing elevated rates of brain and testicular cancer among Gulf war veterans and anecdotal reports of high rates of sleep apnea, chronic sinusitis, and respiratory and dermatological (skin) diseases and disorders, VA has not yet identified any of these as presumptive conditions for Gulf War veterans. 

The full text of Shinseki's speech and opening comments by House Veterans Affairs Committee Chair, Rep. Bob Filner (D-Calif.), are available from the U.S. House of Representatives Committee on Veterans Affairs.

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.

New Chronic Fatigue Drug in the FDA pipeline

Written by Anthony Hardie, 91outcomes

(91outcomes.blogspot.com) - A new drug for chronic fatigue syndrome -- a presumptive condition for veterans of the 1991 Gulf War -- is in the FDA pipeline and the FDA approval application is expected to be decided this fall according to recent news.

In clinical trials, Ampligen has been shown to improve cognition, exercise tolerance, neuropsychological health and overall function in people with ME/CFS; decrease activity of HHV-6 (a virus believed to be linked to ME/CFS); and decrease RNase L activity.
According to Ampligen's manufacturer, Hemispherx Biopharma Inc., more than 40,000 doses of Ampligen were given to about 500 patients in clinical trials at more than 20 U.S. clinics. One of those clinics, the Hunter-Hopkins Center, says 80% of its patients improved on Ampligen, and 50% improved significantly.

As with all drugs, there are potential side effects.

Possible side effects of Ampligen include:

• Mild flushing
• Tightness of the chest
• Rapid heartbeat
• Anxiety
• Shortness of breath
• Feeling hot
• Sweating
• Nausea
• Liver enzyme level changes
• Diarrhea
• Itching
• Low blood pressure
• Rash
• Arrhythmias
• Low white blood cell count
• Dizziness
• Confusion

Some patients have flu-like symptoms for a few hours after receiving a dose of the drug, and the company says these effects typically went away after several months of treatment.

Can Mifepristone Improve Gulf War Illness Symptoms? Trial at Mount Sinai Intends to Find Out

ProHealth article

“A positive outcome would provide a new therapeutic avenue for treating ill gulf War veterans, for whom there are currently few treatment options.”

Presentations at the Military Health Research Forum this week, convened to share information on treating Gulf War Illness (GWI), Aug 31-Sep 3 in Kansas City, MO, include a paper on this ongoing trial at Mount Sinai Medical School in New York:
A Randomized, Double-Blind, Placebo-Controlled, Crossover Trial of Mifepristone in Gulf War Veterans with Chronic Multisymptom Illness (CMI)

The trial is funded and managed by the DOD's Gulf War Illnesses Research Program and Congressionally Directed Medical Research Programs, respectively.

In summary, according to a related news release:

• A large percentage of Gulf War veterans - estimates range from 34% to 65% - continue to suffer from chronic multi-symptom illness, also known as GWI.

• Symptoms can include fatigue, joint pain, headache, rash and cognitive problems, which may reflect altered regulation of the hypothalamic-pituitary-adrenal (HPA) axis.

• The HPA axis is responsible for regulating many things in the body, from the immune system and energy usage, to controlling reactions to stress and trauma.

• Abnormal functioning of the HPA leads to negative effects on many systems in the body, including the immune system and the nervous system.

• Studies have shown that veterans of the 1991 Gulf War have an enhanced [exacerbated] neuroendocrine response to a specific type of hormone called glucocorticoids.

• The increased physical response is associated with chronic fatigue syndrome, fibromyalgia, and post-traumatic stress disorder, all of which can occur with chronic multisymptom illness.

• This study aims to determine if the prescription drug mifepristone, a glucocorticoid receptor antagonist could decrease the enhanced response and therefore improve the physical and mental health and cognitive functioning of Gulf War veterans. [Commonly known as 'the morning after pill,' mifepristone has been studied as therapy for a variety of ills, from uterine fibroids to major depression.]

• Researchers from the Mount Sinai School of Medicine in New York and the James J. Peters VA Medical Center in the Bronx are evaluating veterans of the 1991 Gulf War with chronic multisymptom illness but without any exclusionary psychiatric or medical conditions.

• All subjects will be treated for a six-week time period with the mifepristone compound and then, a month later, treated with an alternative compound (placebo) in a crossover design. [To see the ClinicalTrials.gov listing of the trial - NCT00691067 - click here.]

• Researchers will then evaluate physical health, cognitive functioning and mental health in subjects and determine if there is improvement in these areas in relation to mifepristone administration.

"A positive outcome would provide a new therapeutic avenue for treating ill Gulf War veterans, for whom there are currently few treatment options," says principal investigator Julia Golier, MD. "The trial will also provide an important proof of concept of whether this type of drug will improve physical health and cognitive outcomes in symptomatic Gulf War veterans, thus improving their overall health."

Gulf War Deployment,Toxins Associated with Motor Speed, Attention Declines

Written by Lourdes Salvador, American Chronicle

(American Chronicle - August 26, 2009) - Toomey and colleagues -- researchers at the Boston Veterans Administration Healthcare System -- confirmed that Gulf War deployment is associated with subtle declines of motor speed and sustained attention as influenced by exposure to toxicants during deployment.

Toomey found that exposure to sarin gas released during the Khamisiyah destruction is correlated with long-term reduced motor speed in veterans that has not resolved after 10 years. Self-reported exposure to these toxicants is also significantly associated with attention deficits.

Ten years after the war, deployed veterans are still in poor health and perform significantly worse on cognitive tests than non-deployed veterans. Gulf War veterans complaints include:

• Poor cognition
• Slowed motor function
• Memory Loss
• Chronic Fatigue
• Skin Rash
• Hair Loss
• Headache
• Muscle pain
• Gastrointestinal Disorders
• Cardiovascular Changes
• Chemical Sensitivity

These health alterations point to potential long-term, permanent impairment from toxicant exposure.

The symptoms of Gulf War veterans are analogous to a group of multi-system illnesses increasingly seen in the general population, notably: multiple chemical sensitivity (MCS), chronic fatigue syndrome (CFS), and fibromyalgia (FM). These illnesses all share a common pattern of initiation and, thus, they may share a common etiology (cause) in long-term, permanent impairment from toxic exposure.

Reference

Toomey R, Alpern R, Vasterling JJ, Baker DG, Reda DJ, Lyons MJ, Henderson WG, Kang HK, Eisen SA, Murphy FM. Neuropsychological functioning of U.S. Gulf War veterans 10 years after the war. J Int Neuropsychol Soc. 2009 Jul 29:1-13. [Epub ahead of print]

Gulf War veterans' blood shows illness worsens with exercise

Written by Anthony Hardie, 91outcomes

(Boston, Mass. - June 29, 2009) Research findings presented today in Boston to the federal Research Advisory Committee on Gulf War Veterans' Illnesses noted similarities between Gulf War Illness and Chronic Fatigue Syndrome. Most significantly, the research findings showed that following an exercise challenge, Gulf War veterans had genetic and other measurable biological markers showing not only significant abnormalities related to pain, sensory perception, and the functioning of the immune and endocrine systems, but that these abnormalities dramatically worsen following exercise.

Dr. Nancy Klimas, a distinguished researcher in Chronic Fatigue Syndrome (CFS/ME), Gulf War Illness, and related health issues who is at the Miami, Fla. VA Medical Center, today presented her team's research findings in a public presentation entitled, Impaired immune function in Gulf War Illness.

Her most recent study involved issues surrounding the study of multi-symptom illness with a multi-system pathogenesis, which are the same for GWI and CFS. The study involved an exercise stressor model, with sampling before, at peak, and four hours after an exercise challenge using an exercise bike and a VO2 submax challenge. Blood and saliva samples were taken throughout from the matched ill Gulf War veterans, Chronic Fatigue patients, and health controls. A comprehensive set of genomic and other data was developed from the samples.

CD26+ lymphocytes were found to be elevated in both CFS and GWI, with the highest level in GWI. The findings also showed a reduced sDPPIV/CD26 in blood plasma, even more reduced than in CFS, which is reduced from the healthy population.

Preliminary findings in new, ongoing research further suggest that in ill Gulf War veterans, hundreds of genes are abnormal at baseline, during an exercise challenge, and at four hours following exercise, with the abnormalities worsening to nearly double at rest following exercise. It is notable that these findings correspond with the reported experiences of ill Gulf Ware veterans. Pain, sensory perception, and numerous immunological, endocrinological and other processes were abnormal following the exercise challenge.

While these finding are only preliminary, they suggest that there are significant abnormalities in Gulf War veterans' inflammation, fatigue, and other symptoms, that they are much more abnormal than the abnormalities found in CFS patients. They also show that unlike CFS patients, whose abnormalities drop back nearer to normal after resting following exercise, Gulf War veterans get steadily worse.

Dr. Klimas bases her conclusions on the research finding, concluding that CFS and GWI are similar, but GWI patients are sicker. Perhaps most significantly, and unlike CFS patients, GWI patients "fail to recover" following an exercise challenge, instead dramatically worsening.

Dr. Klimas agreed that it is unclear whether the findings show the disease itself or the results of GWI. However, she believes that ongoing research will show the way to GWI treatments.

According to the official biography for Dr. Klimas:

Dr. Klimas, a director of the laboratory, is board certified in internal medicine and diagnostic laboratory immunology. She is also the director of the Allergy and Immunology Clinic, and is a
licensed laboratory director in Florida. Dr. Klimas is Director of Research for the Clinical AIDS/HIV Research at the Miami Veterans Affairs Medical Center.

A leader in the field of Chronic Fatigue Syndrome (CFS) research, Dr. Klimas is the current President of the International Association for Chronic Fatigue Syndrome. Dr. Klimas is the principal investigator of the National Institute of Health's (NIH) Center for Multidisciplinary Studies of CFS Pathophysiology at the University of Miami. Dr. Klimas has been appointed to the inter-agency CFS Coordinating Committee, chaired by the Surgeon General of the United States. She is the founding editor of the Journal of Chronic Fatigue Syndrome. Recent publications include 123 peer reviewed papers, 3 books and 19 invited chapters.

NJ Center would be dedicated to Gulf War Illness, other diseases

Editor's Note: The bill discussed in the article below, New Jersey State Assembly's AR202, has an identical bill in the New Jersey State Senate, SR133. New Jersey and other Gulf War veterans may find this of particular interest due to the proposed Center's focus on Gulf War Illness. New Jersey residents can find their state legislator using the Legislature's online service.

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

Bill to Fund Neuroendocrine Immune Disorder Center of Excellence in New Jersey OK’d by Assembly, Now Before NJ House

by Rebecca Artman of PANDORA*
June 27, 2009

Research center would be dedicated to ME/CFS, fibromyalgia, Gulf War Illness, Lyme disease, MCS, and other environmental illnesses.

Sat., Jun 27, 2009, via the Co-Cure Listserv: Fantastic news! The New Jersey Assembly has unanimously passed Assembly Resolution 202 to fund a Center of Excellence in New Jersey for Chronic Neuroendocrine Immune Disorders - which include CFS, FM, and related illnesses. [See the full text, attached below, and] link to www.njleg.state.nj.us/bills/BillView.asp for full information on this resolution. The Assembly voted unanimously for this legislation.

The bill is now going to the New Jersey House as Senate Resolution 133. Link to www.njleg.state.nj.us/bills/BillView.asp for the full details.

So if you know anyone in New Jersey, now is the time to encourage them to contact their state senators to fund a New Jersey Center of Excellence.

The Nevada Center of Excellence - spearheaded by Annette Whittemore, was the first such Center of Excellence to be established. Placing another Center of Excellence in New Jersey will allow for networking opportunities and also be a resource for patients on the East Coast of the U.S.

PANDORA Founder Marla Silverman, Board Member Dr. Ken Friedman, PhD, and others have been working tirelessly on this project, and PANDORA will close its offices to all other business for the next six weeks to focus on this project.

Below is the wording of the Resolution.

- Rebecca Artman, Public Policy & Community Advisor, PANDORA, Inc.
___
* PANDORA - the non-profit Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy – is based in Coral Gables, Florida.
____________________________________________

ASSEMBLY RESOLUTION No. 202
STATE OF NEW JERSEY 213th LEGISLATURE
INTRODUCED MAY 21, 2009

Sponsored by:
Assemblyman UPENDRA J. CHIVUKULA, District 17 (Middlesex and Somerset)
Assemblyman HERB CONAWAY, JR. District 7 (Burlington and Camden)
Assemblywoman CONNIE WAGNER District 38 (Bergen)

SYNOPSIS
Urges Governor and memorializes Congress to encourage establishment of research center in New Jersey dedicated to chronic neuroendocrine immune disorders.

CURRENT VERSION OF TEXT as introduced.
An Assembly Resolution urging the Governor and memorializing Congress to encourage the establishment of a research center in New Jersey dedicated to chronic neuroendocrine immune disorders.

Whereas, Neuroendocrine immune disorders (NEIDs) currently include Chronic Fatigue Syndrome/Myalgic Encephalopathy, Fibromyalgia, Gulf War illness, Lyme disease, Multiple Chemical Sensitivity Syndrome, and other environmental illnesses;

And Whereas, Chronic Fatigue Syndrome/Myalgic Encephalopathy, Fibromyalgia, Gulf War illness, Lyme disease, and Multiple Chemical Sensitivity Syndrome have been characterized as being as disabling as Chronic Obstructive Pulmonary disease, End-stage Renal failure, and Rheumatoid Arthritis; and as life-impairing as Multiple Sclerosis, AIDS, and cancer chemotherapy treatments;

And Whereas, The mechanisms of transmission of NEIDs include parasite-borne infections;

And Whereas, The similarity of symptoms of NEIDs imply a common pathophysiology of these illnesses; therefore, discoveries and advances made in the etiology and treatment of any one of these illnesses will be applicable and beneficial to the other NEIDs because of their common pathophysiology;

And Whereas, An estimated 20 million American adults and children suffer
with NEIDs;

And Whereas, The time from illness onset to diagnosis of NEIDs is approximately three to seven years, except for Lyme disease which may take decades to diagnose;

And Whereas, There is mounting evidence of similarities of presentation and origins of NEIDs with Autism, Alzheimer's disease, Multiple Sclerosis, Lupus, Parkinson's and other autoimmune diseases;

And Whereas, Having a research center in this State is essential to:

• Promoting research into the etiology of, and therapeutic interventions for, NEIDs;

• Establishing treatment protocols and providing patient care for all individuals in the State of New Jersey afflicted with NEIDs;

• Serving as a repository for NEIDs research data, patient data and research publications;

• Serving as a resource for NEIDs researchers by sponsoring scientific meetings and encouraging discourse among researchers; serving as a tertiary resource for both physicians and patients in their efforts to manage NEIDs;

• And advancing both NEIDs research and patient care by disseminating the most recent advances in NEIDs research, diagnostics and treatment protocols; now, therefore,

Be It Resolved by the General Assembly of the State of New Jersey:

1. This House urges the Governor to encourage the establishment of a research center in this State dedicated to chronic neuroendocrine immune disorder;

2. This House respectfully memorializes Congress to encourage the establishment of a research center in this State dedicated to chronic neuroendocrine immune disorders.

3. Duly authenticated copies of this resolution, signed by the Speaker of the General Assembly and attested by the Clerk thereof, shall be transmitted to:

a. Governor Corzine and the Commissioner of Health and Senior Services; and

b. The Majority and Minority Leaders of the United States Senate, the Speaker and Minority Leader of the United States House of Representatives, and to every member of the United States Congress from this State.

STATEMENT
This resolution urges the Governor and respectfully memorializes Congress to encourage the establishment of a research center in New Jersey dedicated to understanding and treating chronic neuroendocrine immune illnesses (NEIDs) such as Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME), Fibromyalgia, Gulf War illness, Lyme disease and Multiple Chemical Sensitivity Syndrome.

It is estimated by the Centers for Disease Control and Prevention (CDC) that CFS/ME affects between one and four million Americans and that 85% of individuals suffering with this debilitating and disabling illness have not been properly diagnosed.

The economic impact and loss of worker productivity in the United States due to CFS/ME, alone, is estimated to be over $9 billion per year. Census data, and the incidence rate of CFS in the United States, projects that an estimated 28,000 to 30,000 citizens of New Jersey will suffer from CFS/ME.

The symptoms of CFS/ME include flu-like symptoms (sore throat, fever, chills, tender neck and armpit lymph nodes, unrefreshing or non-restorative sleep, headaches, and post-exertional malaise lasting more than 24 hours), as well as body-wide muscle and joint pain, cognitive impairment, and short term memory loss.

The CDC reports that Fibromyalgia (FM) affects five million women, men, and children in the United States. FM is a condition characterized by body-wide muscle pain, tender points, sleep disturbance, cognitive impairment ("fibro-fog" or "brain fog"), overwhelming fatigue, swelling, joint pain, non-restorative sleep and migraine headaches.

According to the Research Advisory Committee on Gulf War Veterans' Illnesses, Gulf War illness (GWI) is estimated to affect between 175,000 to 200,000 U.S. veterans, some of whom have been suffering for over 17 years. GWI is characterized by multiple, diverse symptoms that include a combination of memory and concentration problems, chronic headache, unexplained fatigue, widespread pain, chronic digestive problems, respiratory symptoms, and skin rashes.

The CDC has announced that Lyme disease is the fastest-spreading infectious disease in the United States, and that New Jersey ranks third in the nation for reported cases of Lyme disease. Yet, Lyme disease is seriously underreported in the United States. Current literature suggests that co-infections associated with Lyme disease play a major role in precipitating chronic illness with symptoms that include flu-like symptoms, extreme fatigue, skin rashes, unexplained weight gain or loss, other endocrine disorders, urinary problems, sexual and reproductive dysfunction, gastrointestinal dysfunction, heart problems, joint pain or swelling, muscle twitching and muscle pain, peripheral neuropathy, vision and/or hearing problems, disorientation, psychiatric disorders, cognitive dysfunction, disturbed sleep, and poor balance.

Multiple Chemical Sensitivity Syndrome and other environmental illnesses are estimated to affect 10% of the American population. These illnesses have a variable, and overlapping presentation with other NEIDs, and have symptoms that include any combination of extreme fatigue/lethargy, muscle/joint pain, sleep disturbances, headaches/migraine headaches, sensitivity to light and noise, dizziness/vertigo, poor memory/poor concentration, nausea/digestive problems, sore throat, constant coughing, wheezing, skin rashes or burning/stinging eyes. -30-