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Is Viral DNA in the blood the only way to diagnose CFS caused by EBV, HHVG, or HCMV?

Discussion in 'Latest ME/CFS Research' started by CFS-Sister, Feb 19, 2012.

  1. CFS-Sister

    CFS-Sister

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    The doctor/researcher heading up a study at a major medical center in northeast USA claims that viral dna is the only way to diagnose CFS. Viral DNA could include HHV6, EBV, and HCMV, for instance.

    This researcher is the first doctor I've ever known to be making that claim. My relative has been diagnosed w/ CFS three separate times, by a doctor in California who was sick with it himself, by Dr. David Bell outside of Buffalo, NY, and by Dr. A. Martin Lerner in Michigan. My relative wants to get in that study because maybe this new drug will kill off his CFS.

    I would so very much appreciate knowing of peer-reviewed studies who have researched and found OTHER ways to diagnose CFS, so I can look them up, print them out, and hand them to this doc.

    He claims that Dr. Lerner's research on this is not published in peer-reviewed journals, so is suspect.

    This relative has been flat on his back, sick and even homeless (sleeping behind friend's sofas) for most of the last 20 years.

    Thanks for any help
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    Welcome to the forum and thanks for being here for your brother.

    I think you may find have trouble finding peer reviewed articles on this as there is so little money for studies. Most articles are based on physicians' experiences. There are other ways being used by individual physicians to diagnose CFS, but I doubt if they have published peer reviewed studies.

    Can your relative qualify for the study and just try it? You may not be able to convince him with articles.

    You might try asking for other patients of Dr. Lerner to contact you and you could put your heads together.

    Best wishes,
    Sushi
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  4. L'engle

    L'engle moogle

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    I don't know much about this, CFS-sister. But thanks for posting on behalf of your relative. So many here do not have supportive family. It is encouraging to see relatives who are deeply concerned and empathetic toward their family members with this illness.

    Good Luck!
     
  5. Daffodil

    Daffodil Senior Member

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    dr. jose montoya at stanford has a study regarding the use of valcyte in CFS. he finds that high IgG antibody titres are sufficient and you do not necessarily need DNA evidence, since those viruses often stay in the nervous system and away from blood:


    http://www.cfids-cab.org/rc/Kogelnik.pdf


    http://www.vicd.info/
     
  6. ixchelkali

    ixchelkali Senior Member

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    No, it's not the only way to diagnose ME/CFS. There are specific criteria for diagnosing ME/CFS. The most recent, and in my opinion the best, is the International Consensus Criteria, published in the Journal of Internal Medicine. It's available online in pdf form here: http://www.wpinstitute.org/news/docs/me-international-consensus-criteria.pdf
    Another widely accepted one is the Canadian Consensus Criteria, which includes a diagnostic protecol. It's available here: http://www.cfids-cab.org/MESA/ccpccd.pdf.

    Your brother has seen a couple of leading experts in the world in the area of ME/CFS. They have extensive knowlege of the disease and would recognize it when they see it. I would trust them. There are also things other than viral DNA which have been proposed as potential biomarkers, such as immune profile, but they haven't been widely validated. Neither has viral DNA. Is it possible that this researcher is just saying that he is choosing to use viral DNA as criteria in his particular studies, as something that can be measured in the lab? That isn't the same thing as clinical criteria.

    Thank you for being interested enough to ask. Your brother is lucky to have a sibling who is concerned enough to look for answers.
     
  7. SOC

    SOC

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    Is it possible that the doctor was saying that for the purposes of this particular study CFS will be defined in this way? So a patient may have CFS, but they are only taking patients for this study who have viral dna in the blood. Defining the patient population by stricter standards than is used for clinical diagnosis is very common in research.

    If this
    just doesn't know a lot about ME/CFS, he's probably just picking a research criteria for patients that he understands. Is he an ME/CFS specialist?
     
  8. Levi

    Levi Senior Member

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    http://www.cdc.gov/ncidod/diseases/ebv.htm
     
  9. ixchelkali

    ixchelkali Senior Member

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    BTW, at least the last few of Dr Lerner's papers were published in the Journal of Virus Adaptation and Treatment, which is peer reviewed. You can find a list of Dr Lerner's publications on ME/CFS here: here
    Of course, just because they've been published in a peer reviewed journal doesn't mean they've been validated, but it's not like Dr Lerner is some kind of crank. Personally, I'd join one of his trials in a hot minute if I lived near there. He's been getting promising results and he has some interesting hypotheses about why it works. His work is well documented, butso far it hasn't been blinded or placebo-controlled.
     

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