February 2002      


 

masthead

 

 

 

 

  1. Articles On Your Health
      Narcophobia: Defining the
             Problem, The Solution
  2. Featured Article
     
    Gulf War Veterans’ Illnesses:
             Health of Coalition Forces
             Hearing January 24, 2002
  3. What's Online at CSSA
  4. News and Views
     
    Volunteers Needed for Master's
             research on
    M.E., CFS and PVFS
      
    Be Careful Out There . . .
          FDA Citizen Petition on Anthrax
             Vaccine
      
       FDA Seeks Comments on IBS Drug
      
       Echinacea Linked to Allergies
      
       Herbal Remedy Linked To Liver
             Disease - Kava Bans Multiply
  5. Resources
     
    Clinical Trials
  6. Specials
  7. The Fine Print
 



 

1.  Articles On Your Health

Narcophobia:
Defining the Problem, The Solution


by Barbara Acello, MS, RN
, Marcia Bedard, PhD, Charlotte Rickels, MFA, and Cheryl Ensom Dack, BA

Narcophobia is a fear that regulatory agencies, healthcare professionals, clients experiencing acute and chronic pain, and their families can share. Our goal was to determine whether clients with severe, chronic pain were adequately medicated and if not, the reasons why. This article, the first of a two-part series, discusses the problem so that hospice and home care nurses can be aware of how their attitudes affect patient care.  Are you narcophobic?


 

2.  Featured Article

joanGulf War Veterans’ Illnesses: Health of Coalition Forces Hearing January 24, 2002
 

Following is vitally important testimony to the newly formed Gulf War Illness Panel. As some of you are aware, this Veteran's issue is of utmost importance to me and has occupied much of my free time and energies for the past 7 to 8 years.

Since the Gulf War ended, hundreds of thousands of US and allied military (Vets) personnel and family members have become mysteriously ill, suffering from constellations of symptoms, often referred to as Gulf War Syndrome Illnesses, GWS, PGI and several other acronyms. Perhaps the most appropriate way to describe the scenario of GWS is Autoimmune, Neurological Diseases with Connective Tissue Disorders. The mortality rate is estimated now somewhere around 25 to 30 thousand individuals. Since first being reported by those becoming ill, our government's posture has been one of denial of its existence, inadequate medical diagnostics and treatments for those who are suffering, and apparent attempts to sweep it all under the rug. Serious scientific evidence has been presented, clearly showing the relationship of this widespread illness to experimental vaccine technology that was and continues to be administered to our military. The following testimony by Dr. Robert Garry, Professor at Tulane University's Department of Microbiology and Immunology, is an honest, straight-forward discussion of the research, the findings and the attempts at obfuscation by our government agencies. If you have never read, studied or become involved in any vitally important matters, this may be the time to do so What is being discussed here is only the tip of the proverbial iceberg relative to unadvised, unconsented and unapproved human guinea pig experimentation. Ethical and moral scientific and governmental responsibility and accountability is at an all time low and presents dangers to vast and unsuspecting populations.  This is important to every man, woman and child in all of creation.

Richard G. Shuster 01/31/02



"Gulf War Veterans' Illnesses: Health of Coalition Forces"
Hearing: January 24, 2002, 10 a.m., Room 2154, Rayburn HOB
STATEMENT FOR HEARING RECORD
The House Subcommittee on National Security, Veterans Affairs, and International Relations
Submitted by: Robert F. Garry, Ph.D., Professor
Department of Microbiology and Immunology
Tulane Medical School, Room 568 JBJ
New Orleans, Louisiana 70112
Date submitted: December 21, 2001

SUMMARY

This Statement concerns our research with anti-squalene antibodies, including the discovery of these antibodies in the blood of patients with Gulf War illness. Our published data and additional data which has been accepted for publication strongly suggests that Gulf War illness is closely associated with an abnormal immune response to squalene indicated by the presence of these antibodies. Our research also links specific lots of anthrax vaccine known to contain squalene to the production of anti-squalene antibodies. In addition, our research demonstrates that the blood test for detecting these antibodies, the anti-squalene antibody assay, may be an excellent tool to aid in the diagnosis of Gulf War illness.

U.S. Army researchers have verified our discovery of the antibodies and, in May of this year, submitted a patent application covering their anti-squalene antibody work. Our patent, U.S. Patent No. 6,214,566, "Method for Detecting Anti-Squalene Antibodies," which we believe covers the same technology, had already issued in April of this year. The Army researchers have made a disingenuous attempt to discredit our work, and they have not yet published any studies designed to confirm our discovery of a link between the antibodies and Gulf War illness, though they state that such studies may be feasible.

We believe that such confirmatory studies and additional studies should be undertaken without delay. We also believe that the anti-squalene antibody assay should immediately be made available under government sponsorship to all physicians interested in using it to investigate the condition of their Gulf War illness patients.

DATA AND OBSERVATIONS

Research data which we published in February 2000 strongly suggests that anti-squalene antibodies are closely associated with Gulf War illness. Specifically, we found in our study participants that 95% of the Gulf War veterans with Gulf War illness and 100% of the non- deployed veterans with Gulf War illness were positive for the presence of anti-squalene antibodies, while 0% of the healthy deployed veterans were positive. Additional research data which has now been accepted for publication shows, in a limited number of samples tested, that an increased prevalence of anti-squalene antibodies in Anthrax Vaccine Immunization Program (AVIP) personnel correlated with administration of lots of anthrax vaccine subsequently shown by the FDA to contain trace amounts of squalene. Our results strongly suggest that the production of anti-squalene antibodies is linked to symptoms of Gulf War illness and to the presence of squalene found in certain lots of anthrax vaccine.

Though the source of the squalene in the vaccine lots has not, to my knowledge, been identified, squalene is used as an adjuvant in animal vaccines. The use of squalene as an adjuvant in human vaccines has not been approved, and human exposure to squalene in vaccines has been shown by others to cause immunological symptoms similar to those found in Gulf War illness patients.

Gulf War illness is present both in Gulf War veterans who were deployed to the Persian Gulf War theater of operations and in personnel who were not deployed, including personnel who never left the United States. The absence of an association between the presence of Gulf War illness and deployment indicates that the causative agent or factor is not associated with the Persian Gulf. Consistent with this observation are the results of a recent epidemiological study finding that vaccinations that were given to both deployed and non-deployed personnel are associated with ill health.

U.S. Army researchers have confirmed our discovery that anti-squalene antibodies do exist and can reliably be detected, and the Army researchers published this work in November 2000. Army representatives filed a U.S. patent application covering anti-squalene antibody technology on May 18, 2001, and we believe that the technology for which the patent was filed is the same technology that was described in the November 2000 article.

A U.S. patent covering our anti-squalene antibody technology issued as of April 10, 2001. The patent is assigned to Tulane University and is licensed to a New Orleans biomedical company. We believe that the claims awarded in the Tulane patent cover the work that was published by the Army researchers. On May 23, 2001, Tulane's licensee wrote a letter to the Department of Defense offering to sublicense this patented technology to the Army so that the Army researchers could perform a study designed to confirm whether the antibodies are linked to Gulf War illness. An Army representative declined this offer on June 6, 2001.

The journal that published the November 2000 article by the Army researchers received the submitted article on April 18, 2000. The material submitted to the journal on that date demonstrated that the Army researchers had confirmed our discovery of anti-squalene antibodies. In June 2000, one of these same researchers, an Army colonel, published a letter to the editor of the journal which had published our original article in February 2000. In the June 2000 letter, the colonel stated that our published results constituted a "new, unproven assay that claims to detect a novel antibody." The colonel made this statement despite the fact that he had already confirmed our discovery and had already submitted his findings for publication. Further, when the colonel's article appeared in November 2000, it cited his own letter of June 2000 to call our original findings into question. The colonel's letter expressing an opinion which he himself had already proven to be baseless was thus used twice in efforts to discredit our work.

The last paragraph of the November 2000 article published by the Army researchers reads as follows:

"With the development of the ELISA using PVDF membranes, as described in this paper, it may now be possible to undertake studies with serum from sick and healthy individuals to determine whether naturally-occurring antibodies to SQE [squalene] exist, and whether the appearance or amounts of such antibodies have any relationship to normal physiologic functions or whether they are associated with any illness."

With the serum samples available to the Army researchers, such studies would in our opinion be very straightforward and would take a short amount of time to complete. The Army has had its own version of the necessary test available for more than two years but has published no such studies.

Based on the Army's actions with respect to our work, we suspect that the Army has in fact conducted these studies and elected not to publish them. Our published research makes a compelling case that, first, anti-squalene antibodies exist, and second, that there is a link between the antibodies and Gulf War illness. Before the publication date of our research, some of our research data was discussed in a GAO report to the Honorable Jack Metcalf entitled Gulf War Illnesses: Questions about the Presence of Anti-Squalene Antibodies Can Be Resolved (GAO/NSIAD-99-5, March 1999). The GAO report specifically recommended that the DoD conduct its own research designed to replicate or dispute our results. The colonel's research group subsequently published a confirmatory study that looked only at our first finding and ignored the second. A confirmatory study of our second finding would be very easy for the Army to do in a short time, and we find it difficult to believe that the colonel's group has not already done such a study, since any good and inquisitive scientist with ready access to test samples would want to do it. Instead of following the GAO's recommendation, however, the colonel chose to publicly ignore our second finding and to make misleading public statements that denigrated our work. Later, when the Army and the colonel were offered the opportunity to license our technology and finish the confirmatory work, they declined the offer.

The presence of anti-squalene antibodies in ill people and the absence of the antibodies in healthy people is the first hard laboratory evidence that Gulf War illness is what some might refer to as a "real disease." It is also the first evidence that an abnormal immunological response is under way in Gulf War illness patients. The anti-squalene antibody assay thus represents the first laboratory test for Gulf War illness. As such we believe that it has great clinical value as a diagnostic aid, and it suggests that therapies designed to modulate the immune response to antigens should be investigated in patients with Gulf War illness.

Recent unpublished observations from the Veterans Administration indicate that there is a significant increase in the prevalence of the neuro-degenerative disease amyotrophic lateral sclerosis (ALS) in Gulf War veterans. The data that we published in February 2000 shows that some of the patients who were ill with Gulf War illness and who tested positive on the anti-squalene antibody assay exhibited neurological symptoms. These results suggest that a possible relationship between anti-squalene antibodies and ALS in Gulf War veterans may exist and should be investigated.

Further research with the anti-squalene antibody assay continues on a limited scale using private funds, but the test is not currently available to individual physicians for investigation into the conditions of their patients. More than two years have now elapsed since DoD researchers have had access to a version of this test. While the DoD has proceeded with an attempt to win its own patent on the test, in our opinion it has done nothing with the test to help any Gulf War illness patient. It is therefore our very strong recommendation that an agency of the U.S. government immediately commission a large study of anti-squalene antibodies and Gulf War era veterans and other personnel, including appropriate ALS patients. Such an investigation should be conducted in the context of, or coordinated with, a population-based study of Gulf War era veterans similar to the ongoing and successful Ranch Hand study of Agent Orange. It is our further very strong recommendation that an agency of the U.S. government immediately begin to provide the anti-squalene antibody assay to all physicians treating patients with Gulf War illness.

For reference information, click here.


 

3.  What's Online At CSSAbooks

Thoughts for the Day — take what you like and leave the rest.  If you have a favorite 'Thought' which you'd like to share with others, please send to Thoughts.

We'd like your Tips on Coping with your 'invisible' illness. They'll be published in a future e-newsletter and on CSSA's website. To submit your tips, click here.

Patient Resources, which is set up specifically for patients needs! There you'll find Information about Medications by Devin Starlanyl, info on a site run by doctors with FMS, a downloadable pamphlet from MCS Health & Environment, links to online support groups and a host of other valuable resources.

We would like to acknowledge and express our thanks to the people or organizations who have so generously supported our efforts since 1997.
 

please donate

Your donation of any amount will help CSSA's Awareness Efforts.  Click here to make a donation through PayPal.

 

Support the efforts of CSSA by purchasing your everyday health, personal care and home care products and popular holiday gift items through our WatkinsOnline Store, where you'll find something for everyone!


 

4.  News and Views

Volunteers Needed to take part in Master's Degree research on M.E., CFS and PVFS.  The investigation is to determine how people suffering from these illnesses cope with psychological issues that arise from having these illnesses, not to pinpoint psychological causes.


Be Careful Out There
. . .

Please take a moment to submit a comment to the FDA in support of the FDA citizen petition concerning the Anthrax Vaccine.  This petition is a valid and legal instrument that has been filed with FDA.  It seeks specific action by the FDA commissioner concerning this controversial vaccine.

FDA Seeks Comments on IBS Drug  Lotronex Was Withdrawn From the Market In 2000, but Some Want It Back.  In response to repeated requests from people with irritable bowel syndrome (IBS), the FDA is now re-examining the status of the controversial drug Lotronex.  [See Editor's comments sent to the FDA here.]

Echinacea Linked to Allergies — Those With Other Allergies Should Be Especially Careful.  Echinacea was recently found to be one of the top 10 most popular herbs and supplements. But a new study shows that this herb shouldn't be taken lightly as it can cause life-threatening allergic reactions.

Herbal Remedy Linked To Liver Disease - Kava Bans Multiply.  A popular herbal relaxant available off the shelf in Canada was banned in France yesterday as reports tied it to severe liver damage. Kava, a South Pacific pepper, is the eighth most popular herbal medicine in Canada.


 

5.  Resources

Clinical Trials

At Acurian you'll find a comprehensive listing of clinical trials actively enrolling participants, detailed drug information, from development through approval to release, and exclusive news and commentaries from leading medical and research resources.  This site requires registration.

At ClinicalTrials.gov you'll find a listing of clinical trials currently recruiting for GWS (4), FMS (5), PPS (2), Autism (7),  ADHD (15), and other illnesses.


 

6. Specials


Last month we announced two contests, the "Essay" Sweepstakes and the "Puzzle" Contest.  Check at CSSA's website for details.

Neither contest received enough entries to make them real contests, so we're extending the deadline on both.

If you'd like to write an essay but are concerned about 'exposing' yourself, here's reassuring news.  Entries will be shown by number, not name, in the interests of fairness AND anonymity.  If you're a winner, you can choose to be identified by your actual name or 'anonymous'.  If you choose 'anonymous', we'll  only need your name and address (which will remain private) in order to send your prize.

C'mon, folks, take a shot at the contests for a $35.00 Watkins gift certificate or a copy of Dr. William Crook's Tired - So Tired and the "yeast connection", with runner-up prizes of Dr. Mark Pellegrino's The Fibromyalgia Chef!


 

7.  The Fine Print

Health Information Disclaimer

CSSA provides resources for informational purposes. Health information should always be carefully reviewed with your health care provider. CSSA will not be held responsible for misuse of information or any adverse effects of recommendations stated in these resources.

Some resource sites that represent commercial ventures are included because they are also of informational value. CSSA does not recommend the use of any particular company or product.

The views or opinions stated in the resources collected here do not necessarily reflect those of the CSSA or its owner.  CSSA assumes no responsibility for any discrepancies or errors contained in these resources.


Other Legal Stuff

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Support the efforts of CSSA by purchasing your everyday health, personal care and home care products and popular holiday gift items through our WatkinsOnline Store, where you'll find something for everyone! Make your donations count and enjoy the process! If you order by telephone, please use CSSA's ID #328108.

 


 

Copyright 2001 The Chronic Syndrome Support Assn., Inc. All rights reserved.
All trademarks are the property of their respective owners.