Gulf War ME/CFS patients: URGENT NEED FOR XMRV & ERV TESTING

[parvofighter]

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
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." ​

Med Hypotheses. 2001 Jun;56(6):697-701.
The problem of Gulf War syndrome.
Ferrari R, Russell AS.​

Tip of the iceberg
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.​

"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.​

"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.​

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."​

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.​

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.​

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. ​

"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!)​

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.​

"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.​

"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."​

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.​

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?

 

[fresh_eyes]

Thanks parvo - more great work from you! So you probably know - but others might not - that Nancy Klimas is a GWS expert, right? One of her posts is at the VA Medical Center there in Miami. In her talk she said that special funding was available for this type of investigation.

So, yes, how to get media attention...Are you aware of any GWS advocacy groups? Vets' groups?

Michael Moore did something with GWS:

http://www.youtube.com/watch?v=YPMteWVaiV8

I'd really like to see us with a more organized PR machine so we can get advocacy like this out right away, don't you think? Seems like the CAA is just not going to do it...

 

[mikipe2]

Wow, awesome research and compilation!

Very interesting read, thank you!

 

[bullybeef]

Excellent, I've copied this to a friend whom is in the British RAF. It will be interesting to see what he makes of it.

I've read on here somewhere that Nancy Klimas is studying for the prevalence of XMRV in GWS. If this study proves true, would this be as controversial as the 4% of healthy carriers?

 

[SDD1244]

parvofighter,

Thank you for your post. All of these illnesses (autoimmune, neurodegenerative, neurobehavioral and these "syndromes") seem to have a common denominator: pathogens.

http://www.immed.org

 

[Frickly]

Parvo

My doctor specializes in the treatment of CFS, Fibro, GWI and HIV/Aids. This is because all these illness have very simular symptoms and respond to simular treatments. She beleives they are related and may come about from the same cause. I have read alot about GWI and many GWI patients beleive they have passed there illness onto there family. It is facinating once you start putting all the pieces together.

Thanks for posting this.

 

[Martlet]

Are you aware of any GWS advocacy groups? Vets' groups?

My husband is a 23-year Air Force veteran. He had retired just before the Gulf War (worked for a defense contractor by then) but keeps up with what's going on in the military world. There are groups of vets on this side of the Pond who are actively trying to get to the truth. A few examples.

http://www.gulfweb.org/

http://www.ngwrc.org/

http://www.gulfwarvets.com/

 

[fresh_eyes]

Great resources, Martlet - thank you. We should try to network with those groups to push for the XMRV testing Nancy K was talking about.

 

[bullybeef]

GULF WAR VETERANS NEED CONCENTRATED ATTENTION NOW - the full story

http://www.veteranstoday.com/modules.php?name=News&file=article&sid=9857

 

[parvofighter]

Holy cow, was that FAST!

GULF WAR VETERANS NEED CONCENTRATED ATTENTION NOW - the full story

http://www.veteranstoday.com/modules.php?name=News&file=article&sid=9857

Jeez, I just posted in the wee hours of the morning, and the GWV's have already picked my post up and added to it. It doesn't surprise me at all. I'm just a newbie to the GWV topic, but when I got thinking about how outraged I am about my own situation, it is NOTHING compared to how I would feel if I had risked my life for my country, and gotten this institutional/national neglect in return.

They have obviously been onto this topic for some time, and hopefully together our patient communities can accelerate the pace of change. This is a bombshell - and it should be.

@Samuel from the National Retrovirus Registry thread http://www.forums.aboutmecfs.org/showthread.php?t=1835
THANK YOU for steering me down this train of thought! FYI others, I raised some other questions on that thread re: Dr Klimas etc.

@fresh eyes. YES, we need a more organized PR machine. I'm thinking to start up a thread on Strategic Alliances for PR. I will always believe that specific advocacy for ME/CFS will be necessary. BUT in order to fast-track XMRV diagnostics/treatment/research, I truly believe that we NEED the combined clout of at least the following patient groups -and that we should be actively reaching out to them. What do you folks think?

• Prostate cancer - their XMRV is VERY similar, and are led often by well-heeled, influential men who have time and money to devote to advocacy
• Autism - it's a no-brainer. Skeptical? Do some websurfing on the autism research. I think I'm a convert.
• Atypical MS?
• And DEFINITELY Gulf War Syndrome
• Others?

 

[Frickly]

Alzheimer's

Don't forget Alzheimer's. There is much information about the simularities between autism and Alzheimer's. My CFS doctor and my son's DAN! doctor have both mentioned this connection and you can find many links to this on the web.

 

[fresh_eyes]

Neimann Pick Type C - "childhood alzheimer's". It's very rare, but still.

@ parvo - You're doing so much great research here. Your efforts are most appreciated. Perhaps a good place to start cranking up that PR machine would be by creating a networking group for all the related conditions on Facebook: "XMRV Action Network"? I'm happy to help if needed.

 

[Frickly]

I agree, CFS, Autism and GWI patients have all been ignored by the government for far too long. We all have an illness that, I and many others, beleive are related. If these three groups could band together for a common cause it would, personally, be a dream come true. What can we do? How can we make this happen?

 

[Frickly]

fresheyes

This is an excellent idea. I am a member of facebook but have no idea how to do this as I am technically challenged. I will help anyway I can if someone can get the ball rolling.

Neimann Pick Type C - "childhood alzheimer's". It's very rare, but still.

@ parvo - You're doing so much great research here. Your efforts are most appreciated. Perhaps a good place to start cranking up that PR machine would be by creating a networking group for all the related conditions on Facebook: "XMRV Action Network"? I'm happy to help if needed.

 

[Mark]

Jeez, I just posted in the wee hours of the morning, and the GWV's have already picked my post up and added to it. It doesn't surprise me at all. I'm just a newbie to the GWV topic, but when I got thinking about how outraged I am about my own situation, it is NOTHING compared to how I would feel if I had risked my life for my country, and gotten this institutional/national neglect in return.

Everyone should check out that veterans today link. I'd like to quote that and add style and colour, couldn't agree more with that and with parvofighter. I've been saying and meaning to contact UK vets' groups too, excellent to know they're on the case! GWS is one of the the closest descriptions of my overall symptomology I've read - and I wasn't there btw! - so the likelihood of a role for XMRV in both seems very high to me. Nobody I'd rather have on my side in a fight! I've heard it suggested GWI gets more recognition than us, but my images are of them fighting the same scepticism, the same doubt, the same aspersions, and a battle for recognition not unlike our own, and I've always felt strongly that Gulf War veterans had an extra layer of indignity in any scepticism handed out given the incredible sacrifices they make for us all. SW is on record that we'll probably never find the cause and we should focus on treatments - and we all know what that means! - so I reckoned they'd probably be ready for some answers!

Autism - it's a no-brainer. Skeptical? Do some websurfing on the autism research. I think I'm a convert.

• Atypical MS?
• Others?

Connections to Autism and MS almost without doubt. Large subsets of each population, at a minimum, have XMRV as root (epigenetic?) reactivation of the condition. Especially atypical variants rising eipdemically post-80s. Neumann pick looks likely, any other alzheimer's connections seem tenuous for now. But significant overlaps probable with IBS, MCS, Lyme?, ... IMO...

Yes we need a thread on the definitive list, and advocacy resources and links re contacting them. One generic thread and one for each resource; start a thread on each condition with a link to existing threads on the subject and a search for the relevant terms.

UK, US, international patients advocacy contacts in all the relevant groups. Who to talk to.

Suggest urgent testing of small cross-sections of all affected groups, rapidly using banked samples, a quick study using shared money from all conditions, and publicly releasing preliminary results early to gain early insight into likely priority areas.

We still need separate CFS advocacy, but reaching out is part of that as well.

 

[MEKoan]

We still need separate CFS advocacy, but reaching out is part of that as well.

I think we may find that some of these conditions are precisely the same as ME/CFS if we test XMRV +. Many of the distinctions are, at this time, quite arbitrary and more than a little political in some cases.

We live in interesting times...

which is a old Chinese curse!

 

[Lily]

Martin Pall's book.....

Explaining Unexplained Illnesses - doesn't he link about 7 or 8 illnesses - those you've listed, also also PTSD and I can't remember what else. Can't find my book at the moment.....

 

[parvofighter]

OK, you've got your thread on XMRV International Advocacy Strategy!

Hi guys, Thanks for your great responses! OK, I set up a new thread under XMRV media etc, called: XMRV International Advocacy Strategy: Help us start a Facebook page: http://www.forums.aboutmecfs.org/showthread.php?p=25833#post25833

I pulled together a "straw-man" of something that could be put up - with the intention that it be liberally critiqued/edited, etc!

Now I am duly pooped. Go get'em!

 

[ramakentesh]

Exposure to organo-phosphates, untested immunisations or more importantly medication such as pyridostigmine bromide causing prolonged cholinesterase inhibition probably account for some of the problems - it could also be that chronic stress is resulting in some sort of epigenetic mechanism.

Perhaps XMRV could have been introduced to these patients through untested immunisations ??.

 

[starryeyes]

That's very possible Ramakentesh.

From the GWI site:

Denise Nichols said: Some of the facts in the studies below are shouting results to us of an attack on their neurological and immune systems, and when you have those two systems involved you do in deed have a mess!

Yes you do and it would be nice if the medical communities would acknowledge that.

Denise Nichols said: The following was noted on the CFS Forum showing they are reading research efforts that gulf war veterans have endured and seeing the parrallels of our paths. They understand the added horror of having had this happen to us after having gone to war and having to wage an even more complicated battle to get help, recognition, appropriate medical care and treatment from the VA who fights against recognizing veterans needs and is extremely sluggish in regards to seeing a potentially new illness that needs physiological answers instead of psychological pandering.

You betchya! I've always felt this way ever since the first Gulf War. I got CEBV in 1985.

Denise Nichols said: We see the need to partner up at this critical time. and keep each other abreast of breaking developments.

This is easy to do on the Web. I've already Bookmarked your page.

Denise Nichols said: and a deep thanks to the civilians that suffer CFS for never giving up.

And a huge thanks to you for serving for our country.