The Biggest Research Funder in the World on ME/CFS: The NIH on ME/CFS in 2012 Pt. I:

January 26, 2012

Posted by Cort Johnson

The NIH on ME/CFS Part I

We just did an overview of what a governmental British medical agency is funding on ME/CFS.  Now we turn to the biggest medical research funder in the world – the NIH. While NIH’s contribution to CFS research is paltry ($6 million/year) given their resources ($30 billion plus/yearly), their penchant for funding large, complex and expensive studies means they’re a very important player in ME/CFS research.  Even with their weak focus on ME/CFS they are still the biggest single ME/CFS research funder in the world; in other words what they think and do with ME/CFS matters -  a lot.

The Trans-NIH Working Group (ME/CFS Working Group) – The ME/CFS Working Group, the group responsible for guiding and funding CFS research at the NIH, has just released their first Program Announcement in three years. Program Announcements are important because they give us a snapshot of (a) what the NIH believes ME/CFS is and, more importantly, (b) what NIH states they will fund.

Now is a good time to look at what the NIH thinks ME/CFS is, what they say they are willing to fund, and what changes have occurred over the past four years.

The NIH on ME/CFS in 2012

CFS is Out  – ME/CFS is In –  In contrast to the CDC, which has asserted that myalgic encephalomyelitis and CFS are separate disorders, the NIH  now believes they are essentially the same disorder and states that chronic fatigue syndrome (CFS) is ‘sometimes referred to as myalgic encephalomyelitis (ME)’.  In a distinct change from past PA’s, the term ‘CFS’ is gone and has been replaced  by ‘ME/CFS’ throughout the document.

Not Just Any Type of Disorder….A ‘Regulatory Disorder’ - This Program Announcement (PA) indicates that the NIH believes chronic fatigue syndrome is not a one-hit disorder emanating from damage in one organ but a complex disorder caused by a collection of errors that occur across multiple systems.

These aren’t just any systems either; the NIH believes that ‘the many symptoms present’ in ME/CFS suggest that ‘subtle perturbations’ in the systems of the body responsible for homeostatic regulation are involved…. They believe ME/CFS is a disorder in which something…an infection, stressor or (?) has somehow discombobulated the body’s regulatory systems making it difficult to keep up proper blood pressure, blood flows, neuroendocrineimmune functioning, etc.  It’s also a disorder in which major systems of the body are not ‘talking well to’ (i.e. regulating) each other.

A Chronic Pain Disorder  As Well – ME/CFS is usually called a chronic fatigue disorder but the NIH believes it is also a ‘chronic pain disorder’ which shares important commonalities and perhaps a similar underlying cause with other disorders such as fibromyalgia, TMJ, interstitial cystitis, and irritable bowel syndrome. It’s not clear if this theory is correct; there are similarities and differences between these disorders, but if ME/CFS does fit in this group then it could benefit enormously from discoveries in these other fields.

An Aside: A Broad Pattern of Neglect Continues  – The NIH has held this belief for over ten years but unfortunately, except for the recent creation of an Inter-agency task force, has made so few efforts (joint conferences, joint studies) to support  inter-disease collaboration, that these fields have essentially developed separately. (Ironically, one of the major NIH initiatives of the past ten years – the Roadmap Initiative – was supposed to foster interdisciplinary research. That may have happened with respect to some other disorders, but not in these field)  That may be changing in small degrees but with the NIH being unwilling to significantly support any of these disorders, the inertia is tremendous.

Fibromyalgia, for instance, effects 4 times as many people as ME/CFS, has had several FDA approved drugs for it, is much less controversial than CFS, but has still seen its NIH funding drop 30% in the past 4 years. FM now receives only slightly more funding ($9 million) than ME/CFS ($6 million) and despite all the progress FM researchers have made, FM patients actually receive considerably less funding per person than people with ME/CFS.

This pattern of neglect shows up in all the disorders the NIH believes are linked with ME/CFS.  NIH funding for interstitial cystitis funding has dropped over 50% in the past five years, and although IC, a very painful and sometimes disabling disorder, affects between 3-8 million women, the NIH spends only between $1.50 and $4 per IC patient per year on research.  IBS is believed to cost the US economy about $30 billion/year in losses, but the NIH doesn’t even track its expenditures on it.

Please take note that all these conditions predominantly affect women, are complex neuroendocrine disorders that cause a lot of distress and pose high economic burdens but do not usually cause death.

Small But Important (?) Changes in Diagnosis – With the emergence of the International Consensus Criteria (ICC), there has been more interest than ever in the definition question and the CFS Working Group has made some subtle but perhaps significant changes in the PA on diagnosis. The 2008 and other PAs strictly called for the use of the Fukuda definition, but the 2012 document does no such thing and instead simply states that ‘investigators should provide details of the case definition used’ in their study. That leaves the door open for the use of different definitions (and, implicitly, subgroups).

An Emphasis on ‘Systems Biology’  - One area that appears sure to get more funding is systems biology, since the 2012 PA, for the first time, devotes an entire paragraph to elucidating the rewards a computer driven systems biology approach may bring in identifying patterns and ‘networks’  present in subsets of people with CFS. This is, of course, good news for Gordon Broderick, who helped develop this approach with Suzanne Vernon at the CDC and is continuing onward with it at the CAA and was recently awarded a very large grant. The NIH believes this approach will allow researchers to finally find coherent subsets of patients.

Calling For Better Study Design – several researchers, including Dr. Montoya and Dr. Vernon, have called for more rigorous study designs and the CFS Working Group agrees. The 2008 PA made no mention of study design but the 2012 PA devotes an entire paragraph to the subject, stating that improper study design and underpowered studies have made it difficult to reproduce results. The group called for researchers to do careful stratification of patients and controls, to use specific time points to collect samples, to use longitudinal approaches, whole genome analyses, validated biomarkers and/or animal models.

This was a good move; with its mixed groups of patients, not particularly good definition and variable symptoms, ME/CFS is difficult enough to study – requiring researchers to do more rigorous studies should only help.

The NIH on the Biological Cause of ME/CFS – the Physiologic Causes Section

The NIH’s emphasis on systems interactions and regulation, regulation, regulation comes through loud and clear in the Physiologic Causes section. The first priority area mentioned is studying the role neuroendocrine and neuroimmune factors play. Next comes the study of neuro-cardiovascular regulation, followed by the effects of immune factors on dysregulated multiple feedback control systems, then the need to document the dysregulation in major physiologic control systems.

Interestingly enough, the next NIH priority is on why moderate alcohol consumption causes such fatigue and debilitation in ME/CFS – an intriguing but wholly unstudied subject which suggests this group is well versed in ME/CFS symptoms.

Holes – A wide variety of research can be fitted into these broad topics, but notice that, despite studies suggesting unique problems with exercise physiology and metabolism are present, there is no explicit mention of that subject. Despite the well documented gender imbalance existing in ME/CFS there are no calls for understanding why women are more likely to be affected than men.  This is particularly surprising since the disorders the NIH believes are allied with ME/CFS also tend to be dominated by women and ME/CFS has been ensconced in the Office of Research into Women’s Health for over ten years.  The NIH did fund several XMRV studies but except for one line in which infection is mentioned pathogens are not mentioned at all. Oxidative stress is mentioned but only in connection with ‘nutritional deficiencies’ (??).  The mitochondria aren’t mentioned at all.

An Institute Shows New Interest in ME/CFS While Others Falter

The CFS Working Group is made up of various institutes and, unlike the 2008 PA, the 2012 document spells out what kind of ME/CFS research several of the Institutes that make up the Working Group are interested in. Some of the Institutes are clearly never going to be major players in MECFS research.  The National Institute of Alcohol Abuse and Alcoholism, for instance, is probably not going to be funding much research on the effects of alcoholism and ME/CFS, nor is the National Institute of Aging (NIA) going to fund any research on fatigability in seniors with ME/CFS.

The notice from the National Institute of Diabetes and Digestive Diseases (NIDDK), however, suggests that this Institute, which is not now and to my knowledge has never funded ME/CFS research, is now interested in doing so. This is apparently due to a revolution in thinking that has occurred in the interstitial cystitis and pelvic pain research fields. The NIDDK now views these disorders as central nervous system disorders they believe fit very well with ME/CFS, fibromyalgia and other disorders and they have gone so far as to create a rather expensive multidisciplinary framework for (the MAPPK project) to study them.

Check out how strongly worded the NIDDK’s notice is:

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) – The NIDDK has a particular interest in supporting projects that examine the potential relationships between ME/CFS and urologic chronic pelvic pain syndromes, such as Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS) and Chronic Prostatitis/Chronic Pelvic Pain Syndrome (CP/CPPS).  Recent epidemiological data reveal ME/CFS, as well as other disorders that share pain as a common symptom, is often associated with chronic urologic pelvic pain syndromes.  This suggests ME/CFS and urologic pain disorders may have common underlying etiologies and may represent manifestations of systemic disease, rather than organ- or system-specific disease.  Studies addressing the potential associations between ME/CFS and IC/PBS and/or CP/CPPS through basic science approaches (to address underlying disease pathology)….are of relevance to the NIDDK mission.

The National Institute of Infectious and Allergic Disorders (NIAID) – a key Institute for ME/CFS – on the other hand, appears to be floundering a bit.  Even after the Rituximab trial and progress in natural killer cells research  there’s no indication that they have any focus at all in ME/CFS. Instead they simply stated which research they will not support (clinical trials).

To their credit the NIAID did fund several XMRV studies including the Hansen, Mikovits and Lipkin studies, and they are funding a Fletcher study and the Schuster viral study, but Dr. Huber and Dr. Klimas had to go to the National Institute of Arthritis and Muscoskeletal Disorders to get their HERV-K18 (endogenous retrovirus) and gene expression studies funded.

Conclusion

Large Words/ Little Commitment – While exception can be made to some parts of the 2012 PA, it provides a sufficient platform to support a variety of ME/CFS research.  Words, however, as we well know, are cheap, and without a commitment to increasing funding and support for ME/CFS at the NIH, the ME/CFS program will surely stay at the bottom of the barrel in funding.

Of the 229 diseases, conditions and research categories the NIH tracks funding for, ME/CFS is ranked 214th in funding at $6 million a year, with its budget eclipsing only such topics as Climate Change, Global Warming, Homicide interventions and hyperbaric oxygen. The NIH spends twice as much on psoriasis, 3x as much on ‘headaches’, 20x as much on multiple sclerosis and 40x as much on asthma as it does on ME/CFS.

The Budget Cut Myth – There is no denying that the NIH is in tough straits financially, but it’s also true that most disorders actually received small increases in funding for 2012 and ME/CFS did not.

Opportunity Missed? -  Scientific conferences are usually associated with major grant opportunities – in fact they are produced in order to prepare for them, but the Scientific Workshop on ME/CFS last year was the exception.  Instead we were told that the NIH would decide on an RFA at the completion of the Lipkin XMRV study in December. The Lipkin XMRV study is due to be completed in March, but with the Science paper being retracted, and  the NCI, NIAID and the Blood Working Group unanimously declaring XMRV was a contaminant, the federal government appears to have made up its mind on that topic – with no grant opportunity forthcoming.

Several years ago we were told that that there were be no special grant opportunities (RFAs) – that the NIH was cutting back drastically in this area – but they continue to pour out.  Since the beginning of this year, 14 RFAs have been released and over 100 were released over the last year.

The NIH can find money to support the work it wants to support. As of yet it has not decided to support CFS in a meaningful way and it’s unclear how – absent a discovery like XMRV – that’s going to change in the foreseeable future.  That said, the NIH is funding some very important studies –some of which are due to be completed soon.

Check out Part II of the NIH on ME/CFS 2012 for a roundup of  the studies the NIH is now funding. (To be released soon.)

 


19 comments

{ 19 comments… read them below or add one }

Karen Lambert January 26, 2012 at 3:47 pm

The medical establishment will have you believe that Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is some sort of mysterious illness, but it’s no mystery to me; CFS/ME leads to HIV-Negative AIDS, idiopathic CD lympocytopena (ICL), a clinical diagnosis that I possess.

How can the AIDS establishment continue with a stale “it’s caused by HIV” theory when there are ICL cases cited in medical journals dating back to 1992? While millions of ailing immunodeficient CFS/ME patients get belittled and neglected, perfectly healthy HIV+ people are allocated billions of dollars in taxpayer money. How can it make any sense to anyone?

In the U.S. last year, the NIH spent $3.1 Billion researching perfectly healthy HIV+ people. Sick, ailing immunodeficienct (some of us dying) CFS patients received a meager $6 Million. How can it make sense to you? Source: http://report.nih.gov/rcdc/categories/

It’s so easy to see that the medical establishment simply has these paradigms (CFS, HIV) inverted. AIDS patients are simply more CFS patients, who also happen to harbor a seemingly harmless virus, HIV. AIDS patients are just the tip of the CFS iceberg, and it’s already well-documented that HIV is not the cause of CFS/ME.

How else do you explain that there is no CFS/ME epidemic in the HIV+ population? CFS/ME does not discriminate. The answer is that there is; any otherwise perfectly healthy HIV+ person that is: 1) symptomatic, 2) is better on ARV’s, or 3) is severely immunosuppressed (AIDS)…

…is a CFS patient.

Putting causal pathogens aside for a minute…simply rename CFS, ME, and AIDS all to be “low natural killer cell disease” and only diagnosis patients with “low natural killer cells” with it. Everyone would very clearly see that:

CFS + ME + AIDS = low NK cell disease = one catastrophic epidemic*

* not caused by HIV

My government sold-out global public health for the sake of profit –> industry, oil, and Orwellian greed.

Now that the mystery has been solved, could we please stop wasting time and re-allocate all the HIV funding into CFS/AIDS research?

I demand a revolution!

7 Step Plan to resolving our World’s catastrophic public health disaster:

1. Demand research funding parity for CFS with AIDS.
2. Suggest that CFS & AIDS be researched together by scientists rather than as separate entities.
3. Urge the CDC to move their AIDS division under the CFS umbrella so they research all the infections that AIDS and CFS have in common.
4. Urge that AIDS organizations (like AmfAR) include CFS under their umbrellas so that CFS advocates don’t have to reinvent the wheel.
5. Demand that the White House, Fauci and the Director of NIH make a public statement that (just from what we know today) in terms of the immune dysfunction and human suffering, CFS is just as serious a public health problem as AIDS.
6. Request that an annual international joint CFS & AIDS conference be held by the World Health Organization.
7. Suggest that next December 1st be declared the first “World CFS/AIDS Day.”

I stopped fighting for myself a long, long time ago.

I fight for humanity.

To learn more about HIV-Negative AIDS, and to see the *new* face of AIDS:

http://www.cfsstraighttalk.blogspot.com

Could I be you?

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Rose Knapp January 26, 2012 at 11:22 pm

Makes good news.

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Tony Mach January 27, 2012 at 1:52 am

“To their credit the NIAID did fund several XMRV studies studies including the Hansen, Mikovits and Lipkin studies”.

Maybe that is the reason they don’t want to have much to do with ME/CFS?

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Dai January 27, 2012 at 4:40 am

@Tony Mach

Not sure the relevance of that. even if (like many) you believe XMRV has turned out to be the “wrong horse” that is no rationale for stopping funding research into other possible causes?

Testing hypotheses is the nature of scientific research surely – every no is one step closer to the eventual yes as it were.

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Cort January 31, 2012 at 4:58 pm

Ouch Tony! Yes, XMRV didn’t work out but with over 200 studies published since the Science paper – it sure grabbed the attention of the research community. Unfortunately the feds lack of interest in ME/CFS significantly predates the XMRV saga – during the early 2,000′s when the NIH budget doubled they actually slashed spending for CFS! The problems regarding CFS and the NIH are deeply ingrained. Its very unfortunate XMRV didn’t work out -as that was our quick ticket to good funding and legitimacy….

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thomas Hennessy, jr January 27, 2012 at 4:19 pm

Please see my Interview with Cort from about 5 years ago, just after the HHV6 conference in Baltimore, MD. I do believe that Cort means well and works hard.
But, i gave Him, Marc Iverson and Rich Carson, the LO-down, 5 15, and 20 years ago….
I said that Louis Pasteur said more than 100 years ago, “The antigen is NOTHING!!!!! the terrain is everything!”….
I studied medical HISTORY, because i was a neophyte in medicine, but a pretty damn good salesman. I was making about $20 grand a month in 1987, though i often felt REALLY sick! Sadly and Stupidly, i did NOT read the Bible, which says that even God rested on the 7th day. I had made a BAD mistake and put some of my small inheritcance ($3500) and $7,000 of my PARENTS’s money into a “SURE THING” land deal in Austin, Texas in 1984, and it went WAY south in 1985, when the Texas water commission declared that the water table could NOT produce enough water for the planned residential community, where we owned our land!….NOT good! they canceled the project and the highway that was supposed to go RIGHT past our hand picked exit property…and our surefire deal went south BIG time! and my poor parents had to pay $2500 a year in Interest payments for the past 24 years while i worked myself almost to death….after a ski trip to Lake Tahoe in the winter of 1986, where i contracted some type of flu, but i could NEVER take a day off, because i was paying for college tuition for younger brothers and sisters, and expensive rent in SF, Ca. and trying to pay back my parents…and this nasty flu got worse and worse, until i collapsed on October 23, 1987, after drinking too many margaritas and raw oysters on a fellow car salesman’s new credit card. (He owed me about $1,00o…to make a short story longer, i have NEVER worked a full day ever again! But i researched the hell out of this shit and I was on CNN’s Larry King Live Twice and PBS’s MacNeil/Lehrer News Hour did a 22 minute piece based on my personal story. I said that a properly working brain is like a fine Swiss watch, with 100 interlocking gears. I claimed that SOME type of TOXIC insult, be it a virus, bacteria, prion, car accident, chemical poison, bioweapon, EXCESS OF STRESS-be it physical or mental, Strikes HARD working, ETHICAL and compassionate, WORKAHOLICS….USUALLY, but NOT ALWAYS at a TOUGH time in their lives…and BOOM! They collapse into a “CIND” (Chronic Immunological and Neurological Disease). I said that the smartest doctors I had read about, called this shit “Myalgic Encephalomyelitis”. aka Dr. Melvin Ramsey’s Disease. Dr. Byron Hyde’s M.E. TOME (some 752 pages of medical papers and commentary…well worth the $95 U.S. price) from the Nightingale Association in Canada gave me the idea to start “May 12th International M.E./FMS/GWS/MCSS/Chronic Lyme Disease Awareness day in 1992 with about a dozen other activists who had written to me after my two visits to CNN’s LKL. This year, May 12th, 2012, will be our 20th anniversary, and my LAST year as an M.E. and “CIND” activist!. you can read some more on my Facebook page at “Thomas Hennessy, jr. Boca Raton, Florida”, or at our website at http://www.rescindinc.org. If you are a HEALTHY webmaster who can help us keep the site going, please contact me through either of those two sites, or at rescindinc@gmail.com. Thanks to ALL who have helped along the way! xo TMH

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Cort January 31, 2012 at 4:55 pm

Nobody has every brought it like Tom brings it :)

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Kathy D. January 27, 2012 at 6:36 pm

The government would be worried about a transmissible virus being spread through the population, including by blood transfusions. They’re worried about epidemics.
If the viral cause is dismissed, and I think the government can’t do that fast enough, then what are they going to research and spend money on?
A disease that isn’t communicable — in their view — but which just makes its sufferers miserable, live with pain, total exhaustion, headaches, stomach problems, disabilities and so on — isn’t enough of a motivation for them to do a lot of research on causes and possible treatments, and spend millions of dollars to boot.
If anyone at the NIH had this disease or lived with a child who had it, might be moving more quickly. But unless they’re highly motivated, whether by scientists, doctors, even medical journals, or by an enraged patient and family community, inertia is the best policy for them.
I will say that it took not only deaths but a vibrant, active and strong movement of people with HIV and AIDS and their community and supporters to push hard for research and treatment for people with HIV and AIDS.
It’s all about pressure, political, medical, social, online and off-line.
Maybe we can’t say “Silence = Death,” as the HIV/AIDS community did, but we can say “Silence = Loss of Livelihoods, Income, Activity, Mobility, Abilities, Friends, etc.” (fill in the blanks.)

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Cort January 31, 2012 at 4:54 pm

My god what a cynical view Kathy D, and my guess is most likely a correct one. One advocate was told that the problem was that more people weren’t dying; if they were we’d be getting more money. XMRV got the NIH going because it was sexy, they have lots of researchers waiting to study the next retrovirus and it might have been in the blood supply. Now we’re back to a ‘complex, multi-systemic disorder that the govt is not interested in spending any money on despite the fact that it often effects people in the prime of their lives and has enormous economic consequences.

There are disorders that effect many, many (many) fewer people which get much more funding. Has anyone accused the govt lately of taking the long view? Not that I can remember…

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Matt January 28, 2012 at 7:24 am

“CFS is Out – ME/CFS is In – In contrast to the CDC, which has asserted that myalgic encephalomyelitis and CFS are separate disorders, the NIH now believes they are essentially the same disorder and states that chronic fatigue syndrome (CFS) is ‘sometimes referred to as myalgic encephalomyelitis (ME)’. In a distinct change from past PA’s, the term ‘CFS’ is gone and has been replaced by ‘ME/CFS’ throughout the document”.

Now to complicate matters, is GWI(Gulf War Illness) a separate disorder or is it same as ME/CFS?
According to DoD and VA approximately 250k of the 600k whom served in Gulf War 1 have some form of ME/CFS.

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Cort January 31, 2012 at 4:49 pm

That’s a great question. It appears to be the same but Nancy Klimas at Nova Southeastern is finding very different gene expression results….. markedly different neuroendocrineimmune networks that are activated in the two disorders. My guess is that several different roads can lead to ‘Rome’; can lead to the state we know as ME/CFS, GWS, etc.

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thomas Hennessy, jr January 28, 2012 at 9:36 am

YAWN! someone said this more than 21 years ago! please check my interview with Cort on the Phoenix Rising site. Sincerely, Thomas M. Hennessy, jr. President, Rescind, inc! our website is http://www.rescindinc.org. there is MORE Truth there than in ALL the NIH, CDC and HHS websites combined!

“CFS” does NOT exist!. Myalgic Encephalomyelitis is ONE of many “CIND” Chronic Immunological and Neurological Diseases!

“LYME” disease is a lie.. it is PLUM island BIOWEAPONS disease complex! please read Michael Carroll’s EXCELLENT book “Lab 257- the TRUE story of the so-called “lyme disease” epidemic! it will open a SMART person’s eyes!

Have a nice day!
xoxooxox
TMH
http://www.rescindinc.org
rescindinc@gmail.com
or “Thomas Hennessy, jr. Boca Raton, Florida” on FACEBOOK…then go to the “NOTES” section!

Toodles, Boys and Girls! xo TMH

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Cort January 31, 2012 at 4:47 pm

Yes, Tom was way ahead of everybody and I hope he is right because that means more funding for each of these underfunded disorders :)

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Matt January 31, 2012 at 12:39 pm

Very interesting article because after Desert Storm 1 Solon Magazine wrote an article connecting Gulf War Syndrome/Gulf War Illness was related to research on AIDS due to the nature of the vaccines Gulf War Veterans received before deployment.

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cfsboston January 31, 2012 at 2:23 pm

From what I can see, the cover-up is occurring in USA, UK, and Australia, allied NATO Forces. Only troops from these countries returned from fighting in The Gulf (1990-1991) with Gulf War Syndrome (GWS). No other allied troops returned home with GWS, like France or Arabs.

The first case of HIV-Negative AIDS (ICL) presented itself in 1992, one year after the War. I have always found this suspicious.

Initially there was tons of Press and general attention of ICL cases….why wouldn’t there be? But then all scientific discussion was muted at the 1992 Amsterdam International AIDS Convention. It’s hard to even find ICL journal citations now. It took me eons to discover them in the medical literature, because I had to read back so far. I have always found this suspicious.

Like myself, my case should be in a medical journal, but the Corporate journals seem to not publish them or perhaps physicians are simply dissuaded from even writing them. It’s like we don’t exist. We just die, and no one even cares to formally acknowledge it. I have always found this suspicious.

It seems that over 1/3 of the military guys (not as many military women back then) returned home with GWS, and infected their wives, girlfriends, and sexual partners. If you are not a veteran then you cannot be diagnosed with GWS. What developed in the women got labeled “CFS.” CFS is undoubtedly an infectious disease. The children of CFS/ME families have unprecedented cases of Asthma, ADD, Autism, and general pediatric illness.

I think it’s simply compounded from there.

CFS and ME (one a syndrome, the other a disease) are mindfully named different things in US, UK and Aussie. Although they are the same exact illness probably with the same exact cause. NATO government simply named the two illneses different things so we don’t roll-up into the same category (i.e., by ICD-coding) on a world-wide level, which would garner more attention then require their public response. Coincidence…I think not.
cfsstraighttalk.blogspot.com

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Matt January 31, 2012 at 4:06 pm

Somebody is hiding something and it may take some ‘water-boarding’ to get them to talk :-)

thomas Hennessy, jr January 31, 2012 at 6:19 pm

I agree with Cort, CFS Boston and Matt. more than 285,000, MOSTLY Male VETERANS from the UK, USA< and Canada are VERY sick with an illness that former CDC Virus hunter, Dr. William Reeves, My ARCH competitor for 20 friggin years was called to Congress for a TOP secret, NO CAMERAS, NO PRESS, NO Public, grilling, and he was asked DIRECTLY by a TOP U.S. Senator on the Military Appropriations committee in about 1995 or 1996, if "CFS" and "GWS" were related…and an insider at a top different Senator's office who has been close to me for 20 plus years heard Reeves answer.
My source said, that Reeves PAUSED and looked around the room and MOSTLY behind him, to see if he could spot anyone that might get the word back to moi….and then he slowly turned back around and said in a VERY PAINED tone of voice (My source told me that he looked like he would RATHER be waterboarded than give the answer he was about to give…)..but he said, "Well, Mr. Senator, there was a Mr. Hennessy and His group that have been saying this for 5 or 6 years, and we NOW believe that they were correct. We believe that "CFS" and "GWS" are not just similar, but they are virtually identical!"….and when the source called me that night on my private, NON public, telephone line with the news….the source was almost giddy, like FINALLY he could tell his constituents that MONEY for research would soon be coming from either the Pentagon or NIH or CDC or ALL of the above….and to be honest, i thought he was pulling my leg….But less than two weeks later, there was a piece on "CFS and possible Links to GWS". and Dr. Reeves was being grilled right as he came out of the hearing the week before…and he was asked the same exact question by the CBS Evening News Medical reporter, and he repeated EXACTLY what my source had just called me about a week earlier. Reeves simply said, "We think that they are not just similar, but virtually identical!"….TRUE STORY…every word! and 16 years later, where is the funding??? where are the Fair insurance settlements. As Cort, so wisely opined a few responses above, there is in the Pentagon's EXACT WORDS…."There is NO, ONE, NEW and UNIQUE cause of "CFS and "GWS"…..so, Insurance companies and the HHS, and CDC and NIH just weasal out of paying for research and fair settlements and we die SLOW agonizing deaths! xoxo TMH

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cfsboston January 31, 2012 at 7:20 pm

Hey Tom,
I always smile when I read your posts. In one of my more attention-grabbing letter blitzes I took TIME cover http://www.time.com/time/magazine/0,9263,7601040315,00.html and pulled out a “letter to editor,” putting it just to the right of the soldier.

The L.T.E. read: “Thanks so much for your report only four years ago, after I returned from Africa and a stint in the Peace Corps, I had trouble convincing physicians my ongoing digestive tract problems (later diagnosed as IBS) seemed linked to periodic hives and aching muscles and joints. The docs were stumped.”

I printed my letter on the backside: “I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and HIV-NEGATIVE AIDS, idiopathic CD lymphocytopenia. With these two clinical diagnoses, I believe that makes me living proof that the AIDS-like CFS/ME is transmissible, …” my whole letter fits nicely on one-sided paper.

I then snail-mailed it to EVERY U.S. local, state, and national politician (mayors, governors, Senators, Reps, White House) and to all their secondary offices. I wish I could remember what year that was…I spent $1,000′s on stamps back then. What can I say? My letter got attention, and 100′s of politicians personally responded to me (all of whom cc’d my MA state reps as a ‘political courtesy.’)

I know I pi$sed off a lot of people, from the consequences (which weren’t too pretty). (Side note: let’s just say that I have always related with your comment about if you die of unnatural causes it was NOT by accident). I still smile about it anyhow…because I know I am saying something right to be pis$ing off so many people. ;) It may never be seen, or even measurable, but I believe I have had substantial political influence on getting attention to all these maladies.

They’ll learn to love me…or not…as the case probably is. This will likely be my last year. Please keep up the fight! Take care. I recently put a photo on my site…from back when I was healthy! It seems like a lifetime ago. http://www.cfssstraighttalk.blogspot.com

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Cort February 2, 2012 at 4:24 am

We could use more activity like that CFSBoston. For whatever reason that type of passion for advocacy is very rare. Good luck with your health.

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