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            At the VAMC Lebanon (starting in September 1991), I was seen in multiple clinics for compensation exams and evaluations.  In order to be seen for my problems, I had to fill out a VA Disability Compensation Claim.  If I did not claim a disability, I would be seen for a non-service connected illness and my medical insurance would be charged.  Many Persian Gulf veterans had bills sent to their insurance companies which resulted in loss of civilian insurance.  No Persian Gulf protocol existed at this time.

III.       Veteran’s Application for Compensation or Pension form

I saw the VA Compensation and Disability representative who assisted me in filling out the necessary form (VA Form 21-526). The form was very complex and instructions were non-existent. You cannot fill out the form yourself because you do not know what the VA actually wants.  (See attachment 1).

For example section 17 wants you to list the “NATURE OF SICKNESS, DISEASE OR INJURIES FOR WHICH THIS CLAIM IS MADE AND DATE EACH BEGAN”  This is all to be placed in a space that is about 7 ½ inches wide and only ½ inch tall.  It does not state that it  really wants diagnoses and NOT symptoms.  However, most veterans only know symptoms since their problems may not have been diagnosed as yet.

See section 19.  This requests information on the “NATURE OF SICKNESS…” again only two lines provided and about 1 inch of space.  It says attach medical records, but as the case is reviewed it seems that these records are NOT referred to.

See section 20.  The same problem as above.  List civilian physicians and hospitals.  No space is available.  I was told that no information should be attached except medical records.

IV.       Results of Initial Claim

I received a letter from the VA in Philadelphia dated May 15, 1992 (See attachment 2).  This letter was a denial of claims.  The problem was that the:

·        Explanations were inadequate and never told you what the problem was with your submittal.

·        Even though they had requested civilian physician input, it was not utilized.

·        The third to the last paragraph stated: “We have considered a 10 percent evaluation because you have more than one non-compensable disability.  Title 38 CFR 3.324 provides that whenever a veteran is suffering from two or more separate permanent service-connected disabilities of such character as clearly to interfere with normal employability, even though none of the disabilities may be of compensable degree, the VA is authorized to apply a 10 percent evaluation.  The evidence does not show employment impairment due to your service connected conditions”.  I didn’t show any employment impairment because the FORM only asked for employability information if you were 100% disabled, it has no provision for stating how you may have lost or reduced employment.

V.        Next Several Years

From 1992 through 1996 I was in a constant process of appealing VA denial letters and resubmitting ‘new’ information.    

1.      For over two and one-half years I was shuffled from one clinic to another each investigating a different body system.  No coordinated treatment or diagnostic effort was ever experienced.  I was so frustrated that I went to the VA patient advocate and asked to be sent to a VA Persian Gulf center for testing, evaluation and treatment.  I had heard about the Persian Gulf Registry at this time and asked to be included.  A physical examination was performed by VA Lebanon in October 1993. A summary letter was provided to me and it stated that “It is unclear if your health problems are related to your Persian Gulf service”.  There were no lab test results reported in the summary. 

2.      I went to the Persian Gulf Referral Center, VA Medical Center, Washington DC on October 27, 1993.  After two weeks I completed their evaluation process and received a Discharge Diagnosis of “Persian Gulf war Syndrome”.  (Washington VAMC, VA Form 10-1000 DISCHARGE SUMMARY, patient Dyckman, Julia, dated 01/31/94)(See attachment 3).

3.      I was evaluated by the Department of Defense CCEP (Comprehensive Clinical Evaluation Program) over a three year period.  This resulted in Medical and Physical Evaluation Boards by the US Navy.  I was awarded 90% disability with the number one condition being “Diffusely Increased Sympathetic Nerve Traffic”.  (Department of the Navy, Physical Evaluation Board letter 1850 PEB 10 dated 16 Aug 1996) (See attachment 4).

4.      During the CCEP I was evaluated by the National Institutes of Health(NIH) and found to have “autonomic nervous system dysfunction”.  This diagnosis supported the primary diagnosis by the Navy boards.

5.      Private physician’s care during this time frame involved: gall bladder removal; complete hysterectomy; removal of stomach polyps; UGI’s; extensive joint and muscle testing; brain MRI’s and sleep testing.

6.      VA ignored their own diagnosis of “Persian Gulf war Syndrome” and “undiagnosed illness”.  The VA also ignored the NIH and Navy diagnosis of autonomic nervous system dysfunction.  The VA gave me an overall disability rating of 80% which was comprised of : 60% for chronic fatigue(CFS); 30% for PTSD; 30% for irritable bowel; and 10% for plantar faciitis.

From 1996 to the present:

7.      I participated in major studies conducted on sick Gulf War veterans, for example: One by the University of Pennsylvania (which included a muscle biopsy that was found to be “abnormal”).

8.      I even traveled cross country for a private physician specializing in Persian Gulf illness (using up savings); had surgical removal of the uvula because of sleep apnea; had UGI and removal of 1 foot of colon due to chronic diverticulitis; seeing private physician for deterioration of joints and bones and chronic pain; still have rashes, fevers, heart palpitations, chronic infections, severe facial pain; diagnosed with fibromyalgia, lupus, diabetes and Baretts esophagitis (pre-cancerous).

9.      Treatment by VA medical personnel (including a “Persian Gulf Physician”) consisted of symptomatic treatment with little relief and total failure to stop progression of illness since there is NO GULF WAR SYNDROME.  If there is not disease per se, there can be no recommended treatment protocol.

10.  I volunteered for VA study programs on sick GW veterans, but because I have already been on long-term antibiotics and another study built around an aerobic exercise protocol is to far way for me to participate as driving a car is usually not possible because of my health.

11.  I have been turned down for treatment by three TRI-CARE primary care physicians because (again) there is NO GULF WAR SYNDROME (therefore there can be no treatment).

12.  Medicare provides another Catch-22 in that it will only pay for diagnosed illnesses and nothing for lab or x-rays or treatment of undiagnosed conditions.

13.  Private physicians cannot be paid for testing or treatment of Gulf war Syndrome because there is no ICD-9 (International Classification of Diseases) code.  No code, no disease, no diagnostic testing, no treatment, no money for the physician whom agrees something is wrong with his patient.

VI.       Governmental Action

1.  Through the years, investigations by numerous medical and political bodies have resulted in:

·        Recognition of nerve (including brain) damage by the University of Texas, et al.

·        Detection of squalene in blood samples (an adjuvant NOT approved by FDA and only used in experimental vaccines)  

·        Mycoplasma spp. infections

·        Multiple chemical exposures and exposure levels

·        Anti-nerve agent pills causing damage

·        “Stress” diagnosis

2.      Failure to establish an ICD-9 code for Gulf War Syndrome.

3.      Failure by the VA medical personnel to provide a positive atmosphere when dealing with sick GW veterans.  Again, “undiagnosed” means one does not have a real illness.  When a veteran files a claim he has to have subjective signs that are not normal; therefore, he/she cannot have an undiagnosed disease as healthy people do not manifest abnormal symptoms without an underlying body dysfunction.  GWS has an established set of symptoms and criteria.  Why has the VA not acted on its own established criteria and symptomatology for GWS.

VII.     Recommendations

1.      Modify the entrance procedures into the VA system for Persian Gulf illness.  The current procedures are based around submitting a claim, which denies most illnesses of the Persian Gulf war.  Documentation in the Persian Gulf area was difficult even when early symptoms presented.  Most in-theater documents were lost or misplaced.

2.      Modify the Veteran’s Application for Compensation or Pension form (VA Form 21-526) to provide adequate space to document the absolute minimum information needed to process the claims.  The VA needs to provide veterans with assistance to properly fill out the form.  Veterans also need access to current VA regulations.

3.      Change the two year limit of at least 10% disability.  This limit is unrealistic due to the specific nature of Persian Gulf illness.  Symptoms may be mild at first but then progress to different levels of illnesses.

4.      Strongly use the civilian medical documentation in considering service connected claims.  Very often civilian medical tests are positive and the VA tests are negative, casting doubt on the validity of the VA tests.

5.      Stop requiring veterans to continually prove they are ill.  Self reporting is ignored and a psychiatric diagnosis is often given.

6.      Allow a selection of physicians.  VAMC Lebanon has a 600 Persian Gulf war patient population yet physicians are being cut.  This additionally limits access to care and diagnosis.

7.      VA claims adjudication process is too lengthy.  Claims take years to process.  Adjudication officers are NOT consistent among VA regions.

8.      Individual adjudication officers have too much power.  They can and do ignore both military and civilian physician diagnoses and make their own diagnoses even though they are NOT physicians.

9.      Appeal process is way too long.  More adjudication officers would shorten the process.  Establish standards using medical and nursing input to provide consistent diagnoses.

10.  Establish an ICD-9 code for Gulf War Syndrome and a definition.  The MERCK Manual of Diagnosis and Therapy, Seventeenth Edition, has a chapter on “Syndromes of Uncertain Origin” with Gulf War Syndrome included.  However, Gulf War Syndrome is the only syndrome without an ICD-9 code.  The definition, even when the etiology is unknown, has to include possible exposures and symptoms.  Military Gulf War service cannot be one of the criteria to prove illness since civilians and families also have the syndrome.

VIII.    Conclusion

            The VA has received significant funding for the investigation and treatment of Gulf War Syndrome.  If they will not name this condition then it is difficult to accept the amount of funding they have received for a non-diagnosed illness.  This illness can be called anything (e.g. Gulf War Syndrome or Saddam’s Revenge or Schwarzkopf’s Folly or etc.).  The VA should be the leader in setting diagnosis and treatment which is what the veterans are asking for.  It has been nine years, which is too long.  Lives could have been saved or at least the quality of life could have been improved.

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