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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Stealth Adapted Viruses in Chronic Fatigue Syndrome

Discussion in 'General ME/CFS News' started by pollycbr125, Sep 24, 2012.

  1. pollycbr125

    pollycbr125 Senior Member

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    http://world.einnews.com/247pr/305199

    W. John Martin, MD, PhD. Summary of Research on Stealth Adapted Viruses in Chronic Fatigue Syndrome (CFS) Patients and the Potential for Therapy of These Viruses via Activation of the ACE Pathway

    As widely anticipated, an NIH sponsored multicenter study failed to identify XMRV in CFS patients. It is fitting, therefore, that I restate the politically-sensitive, yet compelling evidence for stealth adapted viruses as the primary cause of CFS.

    As widely anticipated, an NIH sponsored multicenter study failed to identify XMRV in CFS patients. It is fitting, therefore, that I restate the politically-sensitive, yet compelling evidence for stealth adapted viruses as the primary cause of CFS.

    SOUTH PASADENA, CA, September 24, 2012 /24-7PressRelease/ -- I began using the polymerase chain reaction (PCR) on blood samples from CFS patients in the late 1980's and reported low-level positive results in approximately a third of the tested samples. A 1990 brain biopsy from a patient whose illness began as CFS, was also PCR positive. Yet microscopic examination of her brain tissue showed no inflammation; the accepted hallmark of an active virus infection. This disparity implied that the brain-infecting virus, which was presumably responsible for the positive PCR, was not capable of activating the cellular immune defense mechanism. Cellular immunity typically targets relatively few of the components coded for by the virus genome. It is possible, therefore, for a virus to lose or mutate small portions of its entire genome as a means of evading effective immune recognition. I termed this immune evasion mechanism "stealth adaptation."

    Renewed efforts at culturing cell damaging (cytopathic) viruses from CFS patients and from patients with more severe psychiatric and neurological illnesses, yielded consistent and unmistakable positive results. Cell damage was primarily seen as the formation of foamy vacuolated cells, which tended to fuse into small clusters. The cultures were shown to other CFS researchers, including Dr. Paul Cheney, who was being supported by the CFIDS Association of America. The Centers for Disease Control and Prevention (CDC) was also informed of the results. In 1991, an aliquot of a clearly positive culture derived from the cerebrospinal fluid (CSF) of a comatose patient with a history of bi-polar psychosis, was provided to the Los Angeles County Department of Health, which subsequently sent the culture to the California State Health Department.

    The early microscopic appearances of the cultures were somewhat suggestive of foamy viruses. These are retroviruses, which have incorporated an additional gene, which by itself, is responsible for the foamy cell appearance of infected cells. Actual sequence data obtained on two of the early isolates, however, indicated a more probable origin from cytomegalovirus (CMV), a type of herpes virus.

    Definitive DNA sequence data were obtained in 1995 on a virus, repeatedly cultured from the blood and CSF of a CFS patient. The data showed an unequivocal origin from African green monkey simian cytomegalovirus (SCMV). So too did the 1991 virus isolate provided to the County Department of Health. Some other cultured viruses appeared to be related to SCMV, while others were more likely derived from human herpes and human adenoviruses. Stealth adaptation was, therefore, viewed as a generic process, which could potentially occur with all viruses.

    The SCMV origin of several stealth adapted viruses clearly implicated probable contamination from African green monkeys, which were still routinely being used to produce live polio virus vaccines. In June 1995, I conveyed this important information to the Food and Drug Administration (FDA), CDC, Los Angeles County Health Department, the polio vaccine manufacturer and officials at the University of Southern California, where I was working as a tenured professor of pathology.

    In 2002, I proceeded with an approved study with the Blood Bank at the University of California, Irvine. Consistent with other surveys, approximately 10% of the donated blood samples tested positive by culture. This left the CDC with the dilemma of having to accept the results or fabricate deficiency with the testing methodology. Personal from the California Department of Health acting as inspectors for the Centers for Medicare and Medicaid (CMS) and, by their own admission, working in conjunction with CDC, deemed that testing for stealth adapted viruses had placed the Nation's health in "Immediate Jeopardy" and that all further clinical testing or even use of stored blood samples was prohibited. Detailed copies of all procedures were taken by the State Health Department along with my request that they please undertake their own testing.

    A disgruntled patient and vindictive CFS patient support group played into the hands of the CDC by making false and malicious assertions regarding stealth adapted viruses. Unfortunately, the assertions are easily viewed on the internet and have discouraged many from either supporting or learning from my research.

    With limited resources, the research focus moved to understanding an alternative cellular energy (ACE) pathway. This pathway provides a non-immunological healing mechanism, which is able to suppress and even reverse the cellular damage caused by stealth adapted and other viruses. The ACE pathway can be easily self-monitored using a fluorescence screening method and can be enhanced with various simple interventions, including lifestyle changes. Community based implementation and evaluation of methods of enhancing the ACE pathway in the prevention and suppression of illnesses caused by stealth adapted and other viruses should become major public health goals.

    Federal health authorities have been willing to spend millions of dollars in pursuit of obviously flawed prior studies on the possible role of mouse retroviruses in CFS patients. They have been far less willing to publicly acknowledge research on the existence of stealth adapted viruses. This reluctance to do so is explained in part by the unequivocal origin of some of these viruses from the monkeys used to provide live polio virus vaccines. Therapy for stealth adapted viruses, based on activation of an alternative cellular energy (ACE) pathway, appears promising and warrants further evaluation
    Merry and taniaaust1 like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont know why dr martins theories have been ignored but they do. I think the disgruntled cfs patient was one of the main reasons dr martin lost research grants etc, also may have been a reason for the health authorities to then ignore his research as it wasnt politically popular at the time with the psychobabblers. another conspiracy theory that just could be right especially taking into account the monkey cmv that was found in polio vaccines etc. It appears these polio vaccines were made from african monkeys that contained this stealth cmv virus or so the storie goes.

    cheers!!!
  3. maryb

    maryb iherb code TAK122

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    The sad thing is heaps, is if he is correct, that ME patients themselves played into the hands of the polititians. I would think his research had an influence on Cheney's treatment protocol.
    Do you know what this therapy is?
    "Therapy for stealth adapted viruses, based on activation of an alternative cellular energy (ACE) pathway, appears promising and warrants further evaluation "
  4. Enid

    Enid Senior Member

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    Interesting polly, especially from brain biopsies and I see the much suspected herpes family there too. Not a scientist but hope this research continues. (always wanted to know what my brain MRI "high spots" were).
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont know i would assume antivirals like valcyte would work on monkey cmv.
    Heres a sight of Dr Martins, although it hasnt been updated in awhile http://ccid.org/svintro.htm
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Here is one link to some of dr martins treatment suggestions http://ccid.org/therapies/therapyrec.htm
    Therapeutic Goals in the Management of Stealth Virus Infected Patients
    1. Suppress stealth virus activation and replication, as monitored by periodic viral cultures.
    2. Support cellular metabolism, especially mitochondria functions, methylation reactions and detoxification pathways.
    3. Strengthen normal neural networks and emotional resources
    4. Search for, and remedy other disorders caused directly or indirectly by stealth virus infection

    Suggested Approaches to Therapeutic Goals in a Stealth Virus Infected Patient
    1. Establish baseline illness profilethrough history and clinical examination.
    2. Review and simplify existing medications and other support measures.
    3. Obtain laboratory data related to overall health, and to screen for specific illnesses.
    4. Have patient complete a questionnaireand provide a copy to CCID.
    5. Provide educational material to patient, including reference to www.ccid.org web site.

    Collective Recommendations of Several Clinicians Treating Stealth Virus Infected Patients
    Based on direct discussions with various clinicians and with some of their patients, and supported by a review of pre- and post therapy stealth virus cultures, CCID is developing a set of recommendations that may be of value to other clinicians. The recommendations have not been evaluated through double-blinded studies. Patient care is clearly the responsibility of the treating clinician and these recommendations may be inappropriate for some patients, including children. See www.ccid.org web site Initiate therapy using graduated escalation of dosages and number of medications, as deemed to be suitable and acceptable for each individual patient. Note the use of clarithromycin (Biaxin) is being suggested, not for its anti-bacterial actions, but for its apparent ability to suppress cytokine/chemokine production. This approach is based on recent work suggesting that at least some stealth viruses may be utilizing chemokines as growth factors (see web site for details). Quercetin is a flavinoid anti-oxidant but may also possess potent anti-reverse transcriptase activity. Its use is suggested by the possible role of this type of enzyme in stealth virus replication and assembly. Anti-herpesvirus medications (acylovir/Valtrex) and the more broadly acting ganciclovir, are based on the herpesvirus origins of several stealth adapted viruses. Ganciclovir therapy should be initiated in severely ill, (hospitalized), patients.
    A. Suppression of virus activation and replication
    (1) Clarithromycin 250 mg/day for 5 days, b.i.d. for 5 days; then 500 mg b.i.d. Discontinue therapy if significant bowel toxicity occurs.
    Quercetin (OTC medication) 500 mg t.i.d. with meals for 5 days, increase to 1,000 mg t.i.d.
    (2) If no significant response is reported (via telephone call) by day 10-14, progressively add medicines from list of DMARDS (disease modifying anti-rheumatic drugs). Refer to CCID for current recommendations.
    (3) If the patient is beginning to experience unusual fluctuations in severity of illness, with some signs of improvement, continuealong these lines for at least 4 weeks.
    (4) If no clinical changes by 3 weeks, try acylovir (or Valtrex) for a week
    (5) Repeat virus culture at 4 weeks, plus basic laboratory screening for possible toxicities. If no virus suppression seen, proceed in adults with ganciclovir (either oral up to 4,500 mg/day) or intraveneous (up to 5 mg/Kg/ b.i.d.). Supplement with enhanced anti-oxidant support and other measures. Monitor closely for toxicity, and repeat culture 1 week after full dose is achieved.
    (6) Confer with CCID regarding follow-up culture results and for suggestions regarding children.
    B. Support cellular metabolism
    (1) Establish balanced dietby addressing any dietary irregularities engaged in by the patient.
    (2) Over-the-Counter (OTC) supplements selected on the basis of prior experience of the patient, severity of symptoms, financial constraints, etc. Includes vitamins C, E and A; L-tyrosine; [choice of one or more of the following mitochondria supports: co-enzyme Q10, NADH; æ-lipoic acid, N-acetly-cysteine, or L-carnitine], omega-3 fatty acids in fish oil; folic acid; vitamin sublingual vitamin B12; [S-adenosylmethionine or betaine].
    (3) A typical suggestions for someone on a balanced diet would be vitamins 500 mg vitamin C, 500 i.u. vitamin E, and 5,000 i.u. vitamin A; 10 mg NADH a.m.; 500 mg L-tyrosine b.i.d. and 1,000 mg omega-3 fatty acids.
    Strengthen neural networks
    (1) Behavioral modifications to promote wellbeing and minimize stresses
    (2) Neurontin (100 mg/day for 5 days; 100 mg b.i.d. for 5 days, 100 mg t.i.d. until review at second visit). Progressively increase dose if mood and/or neurocognitive improvement noted or if pain diminishes
    (3) Other medications selected on basis of symptoms and can include anti-depressants, psychostimulants and/or anti-seizure medications.
    (4) More sophisticated profiling of the potential therapeutic benefits of various neural acting drugs can be conducted
    Search for and remedy other disorders
    (1) Thyroid therapy based on elevated TSH with or without low free T3 levels. Check for anti-microsomal antibodies.
    (2) DHEA therapy if signs of adrenal dysfunction
    (3) Probiotics if bowel dysfunction. Screen for altered bowel flora, yeasts.
    (4) Hypercoagulation. Note, fibrin deposition and low ESR may be noted as part of stealth virus testing. If confirmed by other testing consider low dose heparin or bromelain as suggested by other investigators.
    (5) Allergy, food intolerance and/or auto-immune components. Identify by history, auto-antibody and immune complex testing.
    Periodic Assessments
    (1) Questionnaire and reports by others to assess progress, and identify additional diseases
    (2) Laboratory testing to show efficacy and to exclude possible toxicity of the various medications
    (3 Stealth virus cultures at about 6 month intervals
    Note that clinical fluctuations in disease manifestations and in overall severity of symptoms are a common feature of the illnesses seen in many stealth virus infected patients. Flare ups can occur soon after initiating therapy and in subsequent months. It is, nevertheless, advisable to maintain the treatment protocol for at least 4-6 months before concluding a lack of long term benefit.

    There is other info in reguards to hid treatments on his main site.
    Enid likes this.
  7. maryb

    maryb iherb code TAK122

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    Thanks heaps, there's a lot there - interesting stuff, give us something more to think about.
    We have been shafted over the years haven't we?
  8. maryb

    maryb iherb code TAK122

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    Brilliant!! Now just have to find a doc who would work in this way:(

    Also notice "low ESR" now where have we heard that before?
    looked upon by most docs as a good sign - clear it means something else in ME.
    Good to see a lot of what is recommended in the therapy is already with us - acyclovir, coq10 etc.
  9. Enid

    Enid Senior Member

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    Thanks heaps - very useful information even for the DIYers we have to be here.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    His treatments arent anything new but he new this stuff 10 yrs ago so would have been cutting edge back then. Its a pitty his research didnt continue, we may have had more answers??
  11. maryb

    maryb iherb code TAK122

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    Yes I see this was recommended therapy several years ago, brain fog doh, I was thinking on the lines of new.
    Still hasn't filtered to the good ol UK though:(
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Reading over the treatments he recommends that i have copied and pasted, my own treatment is too different really. His antibiotic recommendations are interesting as they are used to help suppress cytokines, not for bacterial infections. He also mentions doxycycline which is a very common helpful antibiotic in cfs/me.
  13. maryb

    maryb iherb code TAK122

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    Yes I noticed that too -so another reason to consider why many people improve after a/biotics - possibly due to the cytokine suppression rather than infection killing.
    did you mean "not too different"?
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  15. taniaaust1

    taniaaust1 Senior Member

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    Ive also always thought the African green monkey simian cytomegalovirus (SCMV) is an area in which further studies should of been done.

    Another area which wasnt ever followed up properly as far as I know is why nearly all of us have had HHV6 of the HHV-6A varietary rather then HHV-6B like the normal population tends to get (according to a past CFS study done on it). HHV-6A is now known to be connected with those who get MS and I feel like the connection of it in us was like hushed up.. and no further research was done to find out why most of us have had the HHV-6A variety which isnt common. This all seems to have been forgotten by most who have ME/CFS.

    By the wikipedia it is now accepted that HHV-6A and 6B are two distinct different kinds of the virus. "In 2012, HHV-6A and HHV-6B were classified as distinct species" http://en.wikipedia.org/wiki/Human_herpesvirus_6

    "
    The Epstein-Barr virus (EBV) paradox is also worth mentioning, as HHV-6 has been reported to transactivate EBV.[26] Individuals are at a 10-fold less risk of MS if they are seronegative for EBV. However, among individuals who are positive, those that acquire EBV infection later in life are at a 3-fold greater risk for MS. "

    I think it will take patient groups fundraising together to end up funding these kind of studies which have been needed to be done for so long now... its like studies are trying to seek out new answers when old findings are yet waiting to be properly followed up and ruled out. These things NEED ruling out properly
    wastwater likes this.
  16. Esther12

    Esther12 Senior Member

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    If he's got results which stand up through blinded testing, he should be able to get published, and then we can look more seriously at them.

    Releasing a press release promoting one particular theory about CFS, just because of the negative Lipkin study? Seems dodgy to me.
  17. maryb

    maryb iherb code TAK122

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    Tania - strange isn't it that whilst testing positive for past and current EBV and CMV infections, I tested negative several times for HHV6 antibodies. I agree though many MEers do test positive for this and is it Klimas thinks its an imporant virus in the illness - perhaps just not for me!!
  18. Aileen

    Aileen Senior Member

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    Esther, I don't know Dr. Martin or have any connection to his organization, but here is what I am getting out it when I look at it. My personal view, and it is only that, is that Dr. Martin has seen the Lipkin study which put XMRV to rest as an opportunity. I'll try to explain.

    XMRV, like his stealth virus idea, was something new. It needed to be PROPERLY validated. We all know how difficult it was to get that accomplished. We had a lot of crappy, useless "research" that supposedly dealt with this before it actually happened. The study that Dr. Lipkin oversaw that just came out was a blueprint of how to do it properly.

    In Dr. Martin's case and in many others the new discovery is just dropped -- forgotten, by all but a few. Perhaps he sees this as a chance to say hey look, this study that just got published is the way it is supposed to be done. Can we do this with my virus please? That is what I'd want if I were in his shoes. That is what I want as a patient.

    Here is a potential pathogen. Now let's put it to the test. We have just been shown how to do it. I'd like it either ruled in so we can run with it or, if it is another wrong turn like XMRV, rule it out properly so there are no lingering doubts and everyone can move forward. That is the way science is supposed to work. Did President Obama not say he wanted more done on this illness? ... hello Mr. President, patients have a request to make (or at lease I would have if I were an American! ;))
  19. w john martin

    w john martin

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    Dear Aileen and other Members,
    Federal support of XMRV studies was a politically safe undertaking; especially once it was realized that the initial publication on XMRV in CFS patients was scientifically flawed. Senior federal health officials have refrained from pursuing published studies on stealth adapted viruses because some of the viruses originated from African green monkey simian cytomegalovirus (SCMV). A more open discussion by federal officials on the use of SCMV infected monkeys for polio vaccine production is needed and could be elicited by repeated inquiries from patient support groups and from the media. Towards this goal, it might be helpful if this comment, along with my earlier statement (available at http://www.24-7pressrelease.com/press-release-service/305199 ) could be forwarded to other CFS patient support groups and/or media outlets.
    I am optimistic that this approach will expedite the evaluation of various methods of monitoring and enhancing the ACE pathway in both the prevention and suppression of viral illnesses. Kind regards, W. John Martin, MD, PhD.
    Valentijn likes this.
  20. Esther12

    Esther12 Senior Member

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    Thanks for responding WJM.

    Is there any evidence from blinded trials of an association between CFS and 'stealth adapted viruses'?

    I know that funding for CFS can be hard to get by, but if you had any credible evidence of involvement, a small scale blinded trial should be achievable, and if positive, would lead to further funding.

    There have been a lot of errors in the past with CFS, often leading to patients spending their time and money on testing and treatments which are not worthwhile. I really think that you should at least try to get some outside researchers involved in testing your ideas and treatments - otherwise you could be selling them to patients for years , without it leading to any good evidence as to whether they are effective or not.

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