Submission For The Record of Dr. Beatrice Golomb, Professor of Medicine Division of General Internal Medicine University of California, San Diego School of Medicine
I. It is a mistake to group together GWI with other chronic multisymptom conditions.
Multiple chronic symptoms can be seen in numerous conditions, from hypothyroidism to vitamin D deficiency to mitochondriopathy. For each of these, the constellation of symptoms might be viewed as not “distinct.” The same symptoms commonly reported at elevated rates in each such condition are also present at lower levels in people without these conditions (and also at elevated levels, in people with the others of these conditions), and no specific symptom is either required or pathognomonic.
In these cases, the conditions are potentially distinguishable because ultimately the mechanism involved was ascertained and tests became available. (Moreover, it is the case that some of these “chronic” conditions can cease to be chronic when the cause is identified and leads to a definitive treatment.) However, this has not always been the case, and indeed, it has not been the case for all that long historically.
The constellation of symptoms in GWI may be seen in many other conditions – such as the conditions cited, hypothyroidism to vitamin D deficiency to mitochondriopathy. For each of these (as for GWI), the constellation of symptoms might also be viewed as not “distinct.” The same symptoms commonly reported at elevated rates in each such condition are also present at lower levels in people without these conditions (and also at elevated levels, in people with the others of these conditions), and no specific symptom is either required or pathognomonic. In these cases, the conditions are potentially distinguishable because ultimately the mechanism involved was ascertained and tests are available; however, this has not always been the case, and indeed, it has not been the case for all that long historically.
There are specific environmentally induced versions of these conditions: radioactivity induced hypothyroidism; bariatric surgery induced vitamin D deficiency; medication-induced mitochondriopathy. If tests were not yet available, there would have remained strong utility in grouping persons with these elevated multisymptom health problems in the context of their common exposure setting, in order to facilitate research to enable these distinct conditions and their foundations to be ultimately elucidated and understood.
It is true that some treatments may provide some benefit, taking the edge of the impact of chronic multiple symptoms (and for that matter, many diagnosed conditions), irrespective of the mechanism that produced the chronic symptoms – coping mechanisms, gentle exercise, addressing the anxiety that may arise from health problems. But grouping GWI together with other chronic multisymptom conditions has potential to do a terrible disservice to those affected. It may retard or extinguish prospects for identifying mechanisms and providing treatments that are so urgently needed by these veterans. Many who served in the Persian Gulf are affected by disabling symptoms, and these problems arose as a consequence of service to their nation. It is possible that their conditions need not remain chronic, if the mechanism is identified and addressed. That should be the goal in GWI.
II. It is a mistake to group these with war-related multisymptom conditions
While unquestionably, health conditions have arisen in association with many prior conflicts, it should be recognized that a range of factors, differing in profile, will have contributed in different conflicts: malnutrition, dehydration and electrolyte imbalance (from diarrheal illness), trenchfoot, malaria, brucellosis, parasitic illness, etc have all affected health of military personnel in different deployments. Many of these (and many other conditions) can produce fatigue and CNS symptoms, and some can engender a broader set of symptoms, commonly in the short term, providing a reminder that common symptoms can arise in different conflicts from different causes with different optimal treatments. More relevant than the existence of symptoms that are features of many conditions, and that have therefore not surprisingly occurred also with prior wartime conditions, is that GWI embodies characteristics that distinguish it from other post-war conflicts. In any case, the existence of features common to many health conditions does not imply the health conditions are the same or are optimally managed in the same fashion.
Conditions that are prominent in veterans of recent conflicts are PTSD, TBI, and GWV: These can be conceptualized as resulting from psychic stress, mechanical brain injury, and environmental/chemical injury respectively. While some symptoms (and even some downstream pathways) may be in common, separate means for protection from these conditions, and separate study to understand mechanisms are in order – and separate or minimally, stratified treatment trials. Treatment with thyroid hormone – though a definitive treatment for hypothyroidism - may not show up as conferring significantly beneficial, if persons with hypothyroidism are combined with persons with numerous other causes of multisymtom illness, diluting the effect. Equally troubling, a treatment may be effective due to benefit in a subgroup, and demonstration of effectiveness, if the groups are conceptualized as one entity, may lead a treatment effective in one group to be inflicted on another group in which it is ineffective or harmful.
For these reasons, it remains desirable to retain conditions with distinct proximal causes, nonidentical mechanisms, and possibly very distinct optimal treatments as distinct, even if some mitigating treatments test as being helpful for several or all of them.
It may ultimately prove to be the case that common causes and mechanisms are involved in some instances of chronic multisymptom health problems in veterans of subsequent deployments, in nondeployed veterans, and in civilians. But it is preserving the group with a common corpus of exposures that provides the greatest chances of ultimately identifying the foundations of this condition, and helping not only Gulf War veterans, but others who have developed similar problems from related exposures.
III. GWV are disadvantaged in screening and referrals
Presently, veterans with GWI seen at the VA are the forgotten stepsisters among veterans with chronic problems. While there are mechanisms in place for screening and referral for TBI and PTSD, no such approaches are in place for GWI. Many VA physicians, nurses, and scientists are not even aware that GWI differs from PTSD, because no formal training occurs about GWI for those who join the VA. Physicians who have been at the VA for a long time received mandated training about GWI that implied they were not ill or it was basically all in their heads. (This was not a conclusion that could be drawn from evidence even at the time; and copious subsequent evidence has refuted this position.)
Physicians that have been at the VA for a shorter time have had no formal required training on GWI, so have no reason to be aware of a difference from PTSD. This is compounded by the fact that the VA has chosen to define and label as Gulf War veterans not only those deployed in 1990-1, but all deployed to the region from 1990 onward. This also precludes meaningful use of VA databases to track health problems and outcomes separately in Gulf War veterans.
GWV with chronic multisymptom problems are often not treated with compassion they deserve. Physicians unfamiliar with their issues, and with limited time, may have little patience for their multiple problems, not understanding that these arose from military exposures. One Gulf War veteran in a high paying job requiring excellent skills who developed new onset weakness with no known cause, read the RAC report and became familiar with evidence on Gulf War illness. He reasonably was concerned that his Gulf War experience might relate to his problems. He presumed that VA physicians would be knowledgable and went to the local VA. He was seen by a neurologist there who told him categorically that he did not believe in Gulf War illness. (The patient shared with me that he cried.) The neurologist told him he only believed in real diagnoses, and so labeled him with a different diagnosis, despite acknowledging that the test results were not consistent with that diagnosis. In frustration, that veteran actually chose to fly to another city to get primary care from a physician who had some knowledge about GWI.
IV. Outside referrals
In principle there are referral approaches for veterans with Gulf War illness that can allow them to undergo more comprehensive evaluation and management at a war related illness center. In practice, there are no meaningful (controlled or randomized) data to say if these centers provide benefit (though, at least patients may feel their problems are receiving attention). Additionally, many VA physicians are not aware that there is an option to refer to these centers, and this option may in practice be limited both by restricted capacity of these centers (there are just a few, not geographically distributed) and the requirement that the local VA cover any costs to fly the patient to the center, which the VA may decline due to fiscal considerations (providing selective access to those who are geographically close).