Many of us civilians with ME/CFS, and are rightfully outraged at our decades-long mistreatment/neglect by our medical systems. Now imagine you were fighting for your country in the Gulf War, were one of the unlucky 4% of the population with latent XMRV. Imagine you get some kind of an immune assault - whether it's the adjuvant in the anthrax vaccine; exposure to war-related toxins; or exposure to massive cortisol as a result of combat fatigue and/or post-traumatic stress syndrome.
You return to your country, develop Gulf War Syndrome/ME/CFS, only to be told that you are malingering.
A political/media bombshell: Gulf War Patients with ME/CFS You return to your country, develop Gulf War Syndrome/ME/CFS, only to be told that you are malingering.
Consider the political leverage for action when the media learns that our young military personnel are first risking their lives for their country, then losing their life to neuroimmune disorders such ME/CFS - and pervasive neglect. And NOT getting diagnosis or treatment for a retrovirus! This population needs to be tested for XMRV asap. And this might be another straw to break the CBT/GET psycholobby's back, that creates a tsunami of change for our community. This could be HUGE in building momentum for swift change.
"Following a war with widespread attention to and concern over the potential for numerous biological and chemical warfare exposures, some Gulf War veterans returned home and developed various illnesses. Although some of these illnesses are readily diagnosable,
the so-called Gulf War syndrome has remained a controversial and nebulous diagnosis.
It is characterized by multiple, subjective symptoms, and by a lack of objective pathology. (SOUND FAMILIAR?)
Given the nature of the illness, and its overlap with many other controversial chronic illnesses,
we suggest that the biopsychosocial model may provide a better solution to this diagnostic conundrum."
the so-called Gulf War syndrome has remained a controversial and nebulous diagnosis.
It is characterized by multiple, subjective symptoms, and by a lack of objective pathology. (SOUND FAMILIAR?)
Given the nature of the illness, and its overlap with many other controversial chronic illnesses,
we suggest that the biopsychosocial model may provide a better solution to this diagnostic conundrum."
Med Hypotheses. 2001 Jun;56(6):697-701.
The problem of Gulf War syndrome.
Ferrari R, Russell AS.
Tip of the icebergThe problem of Gulf War syndrome.
Ferrari R, Russell AS.
Now I need to mention that I'm totally new to Gulf War Illness research. But what I've read (all from PubMed so far @ http://www.ncbi.nlm.nih.gov/sites/entrez) has knocked my socks off (and I realize this might be bringing coal to Newcastle for some of you, so please bear with me!). Here's how I've made the leap from Gulf War Syndrome/Illness (GWS/GWI) to ME/CFS, to XMRV and endogenous retroviruses:
"We conducted a follow-up health survey to collect health information among population-based samples of 30,000 veterans (15,000 Gulf War veterans and 15,000 Gulf Era veterans) using a structured questionnaire...Gulf veterans reported significantly higher rates of unexplained multi-symptom illness, chronic fatigue syndrome-like illness, posttraumatic stress disorder, functional impairment, health care utilization, a majority of selected physical conditions and all mental disorders queried during the survey than did Gulf Era veteran controls. CONCLUSIONS: Fourteen years after deployment, 1991 Gulf War veterans continue to report a higher prevalence of many adverse health outcomes, compared with Gulf Era veterans.
J Occup Environ Med. 2009 Apr;51(4):401-10.
Health of US veterans of 1991 Gulf War: a follow-up survey in 10 years.
Kang HK, Li B, Mahan CM, Eisen SA, Engel CC.
Department of Veterans Affairs, Environmental Epidemiology Service, Washington DC 20420, USA.
Health of US veterans of 1991 Gulf War: a follow-up survey in 10 years.
Kang HK, Li B, Mahan CM, Eisen SA, Engel CC.
Department of Veterans Affairs, Environmental Epidemiology Service, Washington DC 20420, USA.
"Gulf War Illness (GWI) remains a serious health consequence for at least 11,000 veterans of the first Gulf War in the early 1990sWe exposed GWI patients and matched controls to an exercise challenge to explore differences in immune cell function measured by classic immune assays and gene expression profilingWe measured peripheral blood cell numbers, NK cytotoxicity, cytokines and expression levels of 20,000 genes immediately before, immediately after and 4 hours following a standard bicycle ergometer exercise challengeCONCLUSION: GWI patients demonstrated impaired immune function as demonstrated by decreased NK cytotoxicity and altered gene expression associated with NK cell function. Pro-inflammatory cytokines, T-cell ratios, and dysregulated mediators of the stress response (including salivary cortisol) were also altered in GWI cases compared to control subjects."
BMC Med Genomics. 2009 Mar 5;2:12.
Impaired immune function in Gulf War Illness.
Whistler T, Fletcher MA, Lonergan W, Zeng XR, Lin JM, Laperriere A, Vernon SD, Klimas NG.
Impaired immune function in Gulf War Illness.
Whistler T, Fletcher MA, Lonergan W, Zeng XR, Lin JM, Laperriere A, Vernon SD, Klimas NG.
"We examined 100 symptomatic Gulf War veterans (patients) and 100 controls for immunologic assays. The veterans and controls were compared for the percentage of T cells (CD3); B cells (CD19); helper:suppressor (CD4:CD8) ratio; natural killer (NK) cell activity; mitogenic response to phytohemagglutin (PHA) and pokeweed mitogen (PWM); level of immune complexes; myelin basic protein (MBP) and striated and smooth muscle autoantibodies; and antibodies against Epstein-Barr virus, cytomegalovirus, herpes simplex virus type 1 (HSV-1), HSV-2, human herpes Type 6 (HHV-6), and Varicella zoster virus (VZV)...The NK cell (NK) activity was significantly decreased in the patients (24.8 +/- 16.5 lytic units) versus the controls (37.3 +/- 26.4 lytic units)...Autoantibody titers directed against MBP and striated or smooth muscle were significantly greater in patients versus controls. Finally, the patients had significantly greater titers of antibodies to the viruses compared with the controls (p < 0.001). These immune alterations were detected 2-8 years after participation in the Gulf War.... We conclude that Gulf War syndrome is a multifaceted illness with immune function alterations that may be induced by various factors and are probably associated with chronic fatigue syndrome."
Environ Health Perspect.
2004 Jun;112(8):840-6.
Cellular and humoral immune abnormalities in Gulf War veterans.
Vojdani A, Thrasher JD.
2004 Jun;112(8):840-6.
Cellular and humoral immune abnormalities in Gulf War veterans.
Vojdani A, Thrasher JD.
Connection between Gulf War participation and neuroimmune disease. Gulf War participants were possibly exposed to unusual immune assaults. For example, many (all?) received the Anthrax vaccine. Remember the research on autism suggesting a link between vaccines and neuro-immune disease? I used to think it was baloney, but I am starting to come around... Look at this:
"A number of those afflicted may show neurological deficits including various cognitive dysfunctions and motor neuron disease, the latter expression virtually indistinguishable from classical amyotrophic lateral sclerosis (ALS) except for the age of onset...
Possible causes of GWS include several of the adjuvants in the anthrax vaccine and others.
The most likely culprit appears to be aluminum hydroxide."
Possible causes of GWS include several of the adjuvants in the anthrax vaccine and others.
The most likely culprit appears to be aluminum hydroxide."
J Inorg Biochem. 2009 Nov;103(11):1555-62. Epub 2009 Aug 20.
Aluminum hydroxide injections lead to motor deficits and motor neuron degeneration.
Shaw CA, Petrik MS.
Aluminum hydroxide injections lead to motor deficits and motor neuron degeneration.
Shaw CA, Petrik MS.
Genetic vulnerability to multiple chemical sensitivity (MCS) Might this in turn compromise the immune system enough to allow activation of XMRV and/or other ERV's in Gulf War Syndrome? This paper looked at genetic polymorphisms and vulnerability to MCS. Does anyone know whether these findings match those of Kerr's genetic analysis of ME/CFS subgroups?
"Impaired metabolism of toxic chemicals is a postulated mechanism underlying multiple chemical sensitivity (MCS). Because genetic variation alters the rate of chemical metabolism, this study was designed to determine if MCS cases differed from controls for genetic polymorphisms in drug-metabolizing enzymes."
Int J Epidemiol. 2004 Oct;33(5):971-8. Epub 2004 Jul 15.
Case-control study of genotypes in multiple chemical sensitivity: CYP2D6, NAT1, NAT2, PON1, PON2 and MTHFR.
McKeown-Eyssen G, Baines C, Cole DE, Riley N, Tyndale RF, Marshall L, Jazmaji V.
Case-control study of genotypes in multiple chemical sensitivity: CYP2D6, NAT1, NAT2, PON1, PON2 and MTHFR.
McKeown-Eyssen G, Baines C, Cole DE, Riley N, Tyndale RF, Marshall L, Jazmaji V.
And now for the pice de rsistance...
Perspective of the psycholobby: Gulf War Veterans with ME/CFS are malingerers.
"Explanatory models for the increased prevalence of ill health in Gulf veterans compared to those not deployed to the Gulf War 1990-1991 remain elusive. This article addresses whether multi-symptom reporting in Gulf veterans are types of medically unexplained symptoms and whether the alleged Gulf War Syndrome is best understood as a medically unexplained syndrome...The overwhelming evidence was that symptoms in Gulf veterans were either in keeping with currently defined psychiatric disorders such as depression and anxiety or were medically unexplained. (IN OTHER WORDS THEY'RE MAKING IT UP)... We concluded that ill health in Gulf veterans and the alleged Gulf War Syndrome is best understood within the medically unexplained symptoms and syndromes constructs. The cause of increased reporting in Gulf veterans are still not clear and requires further inquiry into the interaction between sociological factors and symptomatic distress. (IN OTHER WORDS, GIVE US MORE MONEY)
Philos Trans R Soc Lond B Biol Sci. 2006 Apr 29;361(1468):543-51.
Multi-symptom illnesses, unexplained illness and Gulf War Syndrome.
Ismail K,[(SEE CO-AUTHORSHIP WITH WESSELEY)/COLOR] Lewis G.
Multi-symptom illnesses, unexplained illness and Gulf War Syndrome.
Ismail K,[(SEE CO-AUTHORSHIP WITH WESSELEY)/COLOR] Lewis G.
"A large overlap exists between the diagnosis of chronic fatigue syndrome (CFS) and the unexplained symptoms reported by many Gulf War veterans (GV). Previous investigations have reported reduced aerobic capacity in civilians with CFS. The present investigation examined metabolic responses to maximal exercise in GVs with CFS compared with healthy GVs...
Compared with healthy controls, GVs who report multiple medically unexplained symptoms and meet criteria for CFS do not show a decreased exercise capacity. Thus, it does not appear that the pathology of the GVs with CFS includes a deficiency with mobilizing the cardiopulmonary system for strenuous physical effort." (HOW ABOUT A TEST/RETEST V02 Max AS PER PACIFIC FATIGUE LABS!)
Compared with healthy controls, GVs who report multiple medically unexplained symptoms and meet criteria for CFS do not show a decreased exercise capacity. Thus, it does not appear that the pathology of the GVs with CFS includes a deficiency with mobilizing the cardiopulmonary system for strenuous physical effort." (HOW ABOUT A TEST/RETEST V02 Max AS PER PACIFIC FATIGUE LABS!)
Mil Med.
2003 Sep;168(9):750-5.
Aerobic capacity of Gulf War veterans with chronic fatigue syndrome.
Nagelkirk PR, Cook DB, Peckerman A, Kesil W, Sakowski T, Natelson BH, LaManca JJ.
Aerobic capacity of Gulf War veterans with chronic fatigue syndrome.
Nagelkirk PR, Cook DB, Peckerman A, Kesil W, Sakowski T, Natelson BH, LaManca JJ.
"Following the 1991 Gulf War, a number of soldiers who fought there began to complain of various symptoms and disorders, the collection of which came to be known as Gulf War syndrome (GWS)... This article considers the way in which GWS sufferers understand their illness to be physical in nature and the way in which they negotiate and resist psychological theories of their illness. ...The paper argues that despite the increasing presence of psychiatry in military discourse, GWS reveals the way that people are able to transform, negotiate and even negate its power and assumptions.
Cult Med Psychiatry. 2008 Jun;32(2):219-37.
Gulf war syndrome: a reaction to psychiatry's invasion of the military?
Kilshaw S.
Gulf war syndrome: a reaction to psychiatry's invasion of the military?
Kilshaw S.
"The aim was to determine the prevalence of chronic fatigue syndrome (CFS), chronic fatigue and fibromyalgia in UK military personnel after the Gulf War 1990-1991... Screening for known medical and psychiatric conditions was conducted to exclude medical explanations for disability and symptomatic distress. Standardised criteria for CFS, chronic fatigue and fibromyalgia were used. (I.E. PROBABLY NOT CANADIAN/FUKUDA!)...Disabled Gulf veterans were more likely than similarly disabled Bosnia and Era veterans (adjusted odds ratio 7.8, 95% confidence interval 2.5-24.5) to meet the criteria for CFS...
CONCLUSIONS: Symptoms in keeping with CFS account for a significant part of the symptomatic distress in Gulf veterans."
CONCLUSIONS: Symptoms in keeping with CFS account for a significant part of the symptomatic distress in Gulf veterans."
Psychol Med. 2008 Jul;38(7):953-61. Epub 2007 Sep 25.
Chronic fatigue syndrome and related disorders in UK veterans of the Gulf War 1990-1991: results from a two-phase cohort study.
Ismail K, Kent K, Sherwood R, Hull L, Seed P, David AS, Wessely S.
Chronic fatigue syndrome and related disorders in UK veterans of the Gulf War 1990-1991: results from a two-phase cohort study.
Ismail K, Kent K, Sherwood R, Hull L, Seed P, David AS, Wessely S.
I am keenly interested in what (if any) prevalence of active XMRV will be found for Gulf War Syndrome ME/CFS. In the civilian population, exposed to everyday stresses, it is plausible that 4% of healthy controls might have asymptomatic XMRV. Now take a population of military personnel, expose their immune systems to massive stress, toxins, vaccine adjuvants... does the incidence of ME/CFS go right up to 4%? What proportion of those 4% "normals" convert to active XMRV/XAND? And might there be endogenous retroviruses at play - that got activated in the unique environment of the Gulf War?
Bottom line, the sooner the incidence of XMRV, opportunistic infections, and/or endogenous retroviruses can be evaluated in well-defined ME/CFS Gulf War cohorts (i.e. Canadian/Fukuda criteria), the better. I wonder if the media might pick this story up. Ideas?
