Monday, March 18, 2013

Closing the loop


ME/CFS is often thought to be virally induced - especially in rapid onset cases. The early literature looked for viral association with enteroviruses, followed in ensuing years by other viruses - HHV-6, EBV, CMV and Parvo 19. Most likely, all of them will eventually be associated with ME/CFS, and we can look forward to Dr. Ian Lipkin's study for clarification.

Most of potential viral involvements in ME/CFS are measured by viral titers in the blood. Various clinicians - Montoya, Lerner - have attempted to "read" these titers, especially in regards to EBV and HHV-6,  and to give them diagnostic meaning. Their results have been inconclusive.

In several cases clinicians have done actual tissue biopsies on heart, stomach and muscle, looking for viruses or fragments of virus in ME/CFS patients. Most intriguing is Dr. John Chia's enteroviral study done in 2007, found here. I have seen the frightening slides of Dr. A. Martin Lerner's biopsies of heart tissue showing EBV intrusion. He stopped doing these heart biopsies after two or three cases - as they were dangerous to the patient. More recently Dr. Kenny De Meirleir, Dr. Vincent Lombardi and Dr. Marc Fremont have been looking at stomach tissue for HERV-related viral activation in this Whittemore Peterson Institute sponsored study.

I have shown my daughter's viral titers results to various ME/CFS physicians. Most glance at the sheets of paper and shrug their shoulders, saying nothing. I have shown various physicians results on my daughter showing consistently high viral titers to Coxsackie B3 and Coxsackie B4. Mostly they are mute in their response. Dr. Derek Enlander is an exception. In reaction to viewing high Coxsackie B viral titers, he said, "These might be significant." Once in a while doctors say that there is nothing that can be done with Coxsackie B. This is not entirely true. On Cort Johnson's fine site we find Dr. John Chia saying, "There is no doubt in my mind that this is a treatable disease."

And help could be on the way - especially with a little more clarity.

Unlike HERV- stimulated viruses and the set-aside XMRV, Coxsackie B3 and B4 are associated with various serious human disease states - myocarditis and diabetes for starters. Coxsackie B viruses are not seen as benign, happy viruses. Maybe part of ME/CFS is a coxsackie B3 virally induced myocadritis. That would explain a lot. 

And yet the world of Coxsackie B viral titers is not consistent. Viral titers for Coxsackie B are measured in various ways. Here is an example.

In December 2012 this result came back from Focus lab (through Quest).

B1    under 1:8            
B2    under 1:8 
B3    under 1:8
B4    under 1:8
B5    under 1:8 
B6    under 1:8 
reference: under 1:8

Meanwhile, the same patient in September 2012, three months earlier, had this result from ARUP labs in a coxsackie B viral titer test by neutralization.

B1       under 1:10
B2       1:10
B3       1:640
B4       over 1:640
B5        1:640
B6         under 1:10
reference: under 1:20

In  two results from the same blood draw of October 2009, my daughter got these discrepant results.

October 2009, at Focus Diagnostics
b1 1:16
b2 under 1:8
b3 1:16
b4 1:16
b5 1:8
b6 1:8

October 2009, at ARUP labs
b1 under 1:10
b2 1:320
b3 1:80
b4  over 1:640
b5 1:10
b6 under 1:10

By chance I have been doing the ARUP testing on my daughter for about eight years. There has been a consistent pattern over this  period. Focus labs have reported low or normal Coxsackie B antibodies while ARUP has reported consistently high Coxsackie B antibody titers for B3 (often 1:320 and 1:640) and B4 (Mostly over 1:640)  - all from the same patient. 

In the last few years I have become aware that Dr. John Chia also uses this ARUP test, also hitting upon it by chance. Dr. Chia says the ARUP test is more sensitive to picking up antibodies in ME/CFS patients. The Enterovirus Foundation recommends this ARUP test. 

This is what they say about it:
"Micro-neutralization test - Persistently elevated antibody levels for one or more enteroviruses over years can suggest a chronic enteroviral infection. The Micro-neutralization test is a very sensitive, specific test and only 11 enteroviruses, coxsackie B 1-6 and echoviruses 6,7,9,11 and 30 can be tested by using this method. Titers of 1:320 and higher are good indications of current infection.

It is important to note that only one commercial laboratory in the United States is recommended for this test: ARUP in Salt Lake City. These tests can be ordered directly from ARUP or ordered through Labcorp. If ordered through Labcorp, write on the form to specifically state to send this test to ARUP.

Indeed these more elevated ARUP test results helped Dr. Chia complete the puzzle of his rediscovery of the older association of enteroviruses with ME/CFS. The proof is in the pudding. Dr. Chia cured his son Andrew's ME/CFS (or put it in permanent remission).

It might be of interest if ME/CFS clinicians refocus interest in enteroviruses and test their patients for Coxsackie B and Echoviruses via neutralization at ARUP. The hope would be that Dr. Lipkin is also looking at this enteroviral association. If patients who formerly have low viral titers to Coxsackie and Echo viruses start coming back with higher titers through doing this ARUP test, interest in the association with enteroviruses in ME/CFS might be heightened - and lead to renewed interest in confirming what Dr. John Chia has found in tissue samples. It is a great mystery why no one has tried to confirm Dr. Chia's findings in 2007. There has to be a reason. What is it?

In 2007, Dr. John Chia and his son Andrew Chia,  found 82% of 165 patients postiive in stomach biopsies for VP1 - enteroviral capsid protein. VP1 testing for enteroviruses was done from blood from ME patients as far back as the late 1980's by Professor James Mowbray and Dr. John Richardson in the UK (until this VP1 test was "deeped sixed" by Wessely in 1989.)

For years I have heard that there is not a clear association of a virus with ME/CFS. Why does everyone look somewhere else when the potential for one viral association is sitting in clear view? 

To some this might look like an insignificant detail. Quite the contrary: a clear viral association (not necessarily cause) with ME/CFS would be a tremendously big deal - and potentially nail down one corner of this illness.

It is time to reignite interest in the association of enteroviruses in ME/CFS. Confirming this would be a  big step in the right direction - and perhaps encourage drug companies to wake up regarding enteroviral drug research. Nailing down an enteroviral associaton with ME/CFS would not take years of research. It could be done quickly. Dr. Chia has given us the start. Hepatitis drugs are coming down the pipeline - and they might work. Researchers, clinicians and patients need to do more to raise awareness of establishing enteroviral association with ME/CFS.

As patients we can help by switching out these tests and seeing what results are gotten.

Several more articles on enteroviruses can be found at InvestinME here and here

10 comments:

  1. ARUP says to use their own tubes, can a doctor send through Labcorp without those tubes? Very happy to see attention to Dr. Chia's work and the viruses found in tissue samples. citybug

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  2. I was another that testing from Quest Labs showed nothing and ARUP showed scary high titers of 2 strains of Cox B and an Echo.

    My symptom list certainly consistent with long term EV infection.

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  3. Thank you for your advocacy.

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  4. In the UK it is no longer possible to get a VPI test done......unless you are a vet and it is for an animal......unbelievable that they dont look to see which viruses are doing the rounds.

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  5. Thanks once again for a cogent and powerful essay.

    Remember, the first name for this disease was atypical polio. The polio vaccine only gets strains 1-3. There were always other strains, and the assumption was that "atypical polio" was either an unusual response to the common strains or (more likely) another, unexamined strain.

    But to enable governments and WHO to announce they had a vaccine that made polio threat of the past, there could not be strains besides the 3 included in the vaccine. Other strains became polio-family, became "enteroviruses", fell out of common medical parlance.

    The disease condition that had been known as atypical polio also got renamed. In the UK and British Commonwealth nations, the new name was (Benign) Myalgic Encephalomyelitis (M.E.); in the U.S. It was Epidemic Neuromyesthenia, which fell into disuse.

    It just makes sense that M.E., formerly atypical polio, might be caused by a polio-family virus - an enterovirus.

    Coxsackie (named for a town in NY that had an outbreak) is an enterovirus. As noted here, Coxsackie B in M.E. was extensively studied in the UK before the Wesselyite psychiatrists took over. But that research died on the vine through lack of funding, and enteroviruses were seemingly forgotten ... Until John Chia's pathbreaking work.

    In his recent interviews with Llewellyn King (on You-Tube in the ME/CFS Alert series), Dr. Chia completed the circle: he has evidence that not just the polio-family virus Coxsackie, BUT ALSO other strains of polio itself are implicated in this disease.

    Again, with the history of this disease, with the similarities between symptoms and those of post-polio syndrome, THIS MAKES SENSE.

    But there are neither FDA-approved nor FDA-pipeline drugs for enteroviruses - for Coxsackie and polio strains other than 1-3. Dr. Chia has turned to Chinese medicine for answers when western medicine abdicated.

    I hope your daughter can try the new treatment, and I hope it helps us.

    But it shows HOW MUCH has been lost by deliberately forgetting the true history of this disease and replacing it with a narrative that begins with the male-imagined disorder of women from 150 years ago, neurasthenia.

    For the record, I tested positive for Coxsackie B in 2008, as well as the persistent herpesvirus infections I had known about for years. Maybe Ampligen helps with Coxsackie, too -or maybe cleaning up those other infections frees up the immune system to go after it. I wonder if it is related to the diagnosed symptoms of post-polio that have come and gone and come back again in my long history with this fascinating disease - never short of surprises.

    And I wonder ... How much of this story do I want to tell FDA?

    Mary Schweitzer

    But Chia

    So there is a straight line from the identification of a cluster outbreak of atypical polio in L.A. In 1934, and

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  6. I wholeheartedly agree that much has been lost by deliberately forgetting the TRUE history.

    Such as neurologist George Beard developed the "neurasthenia" term for his OWN condition, which he took to be serious and very real, even though he thought it was the result of nervous exhaustion.

    Or that Dr Cheney and Dr Peterson ruled out coxsackie virus, and last I heard, Dr Peterson still considers "pure CFS" to be an illness that exists quite independently of it.

    Dr Peterson is the physician who called the CDC, started the process that resulted in the creation of the "CFS" syndrome, so it seemed reasonable to me that before people consider CFS to be resolved, they might at least remember to ask him about it.

    Of course, I have to take into consideration that not a single CFS researcher has ever followed up on the Tahoe/Truckee incident, so they are quite capable of "forgetting" history themselves when it is convenient to do so.

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  7. About five years ago (if I remember correctly, which I usually do not in respect of dates) Dr. Susan Levine ran experiments to determine the reliability of various labs. The bottom line was that lab reliability and accuracy ranged from appalling to not very good. If Chris or others want to look further at lab reliability it might be worth inquiring about her work.

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  8. I would love to see more research into any of the viruses that have been implicated in ME.

    The UK NHS used to run the VP1 test but myself and many other pre-CFS patients were negative. The MEA collected responses from their members and most I believe were negative using that test.

    That doesn't mean the virus isn't implicated, could have been the test. We just don't know.

    I'm past the point of chasing old, known and discarded virus ideas. It's too distressing to keep looking at the same thing, decade after decade with no movement forward. If a researcher wants to present the case for a one virus explanation it needs to fit the presentation and our existing knowledge of an entrovirus doesn't support that.

    In the 80's we couldn't treat entroviruses and from talking to Chia patients we still can't.

    If there is a virus it's most likely an unknown one.

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  9. During the incident described below, when everyone "staggered in" to see those physicians, a virus was going through the area.
    What Cheney and Peterson were looking at was the result of that viral aftermath.

    This phenomenon was called "CFS"

    I had believed that when "CFS researchers" got tired of bashing their heads against the walls, chasing every virus known to man, out of sheer desperation, they might come back and look around to see if there was anything more going on.

    They won't do it. They absolutely refuse.

    There is your choice folks, "Virus or nothing", because they are going to make damn certain that a viral illness is ALL "CFS" is... even if they have to kill you, doing it.

    Osler's Web: Inside the Labyrinth of The Chronic Fatigue Syndrome Epidemic
    by Hillary Johnson
    Crown Publishers, Inc.

    In 1985 in Incline Village on Lake Tahoe, Nevada, two physicians began noticing an unusually devastating illness with an array of symptoms never seen before.
    Puzzlement at the first few cases turned into alarm when more and more patients staggered in with the same debilitating symptoms. Called variously the Lake Tahoe Disease, Chronic Epstein-Barr virus syndrome, Yuppie Flu, and finally Chronic Fatigue Syndrome, this new illness was also being noticed in Brigham and Women's Hospital in Boston, in various hospitals in Los Angeles and San Francisco, and in small towns in upstate New York as well as at other points around the United States., The majority of early cases reported in the press afflicted middle-class middle-aged women. Unable to find any one cause for this bewildering array of symptoms, the medical establishment attempted to convince these women that it was all in their heads.

    http://www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/051770353X

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  10. Another great example of the difference between "What people say" and "What people do"

    They "said" they wanted to know about CFS.
    Their actions indicate the exact opposite.

    The Kafka Pandemic

    http://thekafkapandemic.blogspot.com/2013/03/three-damaging-myths-about-severity.html

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