The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Are viral titres important??

Discussion in 'Other Health News and Research' started by heapsreal, Dec 7, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    I have mentioned this in another post but thought it was worth a post of its own. From what i have read viral titres may not be that important but go hand in hand with symptoms as healthy people can have high viral titres to igm and igg and no symptoms or active infections. This link refers to cmv but would think it also refers to other herpes viruses. Whats interesting is that it mentions immunocompromised patients can have active infections going on but have lower igm and igg then expected. cfs/me are immunocompromised people. Maybe nk function testing with symptoms, possibly cd8 t-cells and viral testing is the best way to tell if you have an active infection.

    What does the test result mean?
    Care must be taken when interpreting the results of CMV testing. The doctor evaluates the results in conjunction with clinical findings, including signs and symptoms. It can sometimes be difficult to distinguish between a latent, active or reactivated CMV infection. This is due to several reasons, including:

    A healthy person who has been infected with CMV at one time will continue to harbor the virus. The CMV can reactivate intermittently, often sub-clinically, shedding small amounts of virus into body fluids but not causing symptoms.
    An immune-compromised person may not have a strong antibody response to the CMV infection their IgM and IgG levels may be lower than expected even though they have an active case of CMV.
    The virus may not be present in sufficient number in the particular fluid or tissue tested to able to be detected.

  2. Nielk


    Hi heapsreal,

    All I know is that my doctor: Dr. Derek Enlander in NY tests for the viral loads every three months on his patients. In his experience, the values go up directly in
    relation to the severity of the symptoms of the patient. This is a tool he uses 1- to examine whether the patient need to be put on anti-virals and which one to use and 2-
    the progress that the patient is making. In my experience, I can attest that this works. When I'm crashing the titres go up. When I'm feeling a little better, the titres go down.
    He has a lot of documentation and charts about this.
  3. Tony Mach

    Tony Mach Show me the evidence.

    Upper Palatinate, Bavaria
    Just one note:
    There is documented involvement of the immune system in ME/CFS, but I don't think ME/CFS would meet the medical definition of Immunodeficiency (what "immunocompromised" implies). If you were immunodeficient, this would be a serious threat to your health and your life expectancy would be seriously shortened a simple infection could kill you. People with ME/CFS don't die that fast, which is good and bad we can live long lifes, but doctors can ignore our problem

    The CFIDS used the term "immune dysfunction". Recent research from Norway suggest an Autoimmune mechanism. I favour "immune involvement, possibly autoimmune" at the moment.

    Usually, only the pathogen-tests your doctor orders "matter", as he/she will know only what action to take based on them. From what I have learned in my case, one should generally rule out HIV by doing a HIV-test (and it usually isn't HIV) most other tests are "interesting". One could test for CMV, or for Hepatitis B/C, or for EBV, or, or, or.

    One more thought: What I found (mildly) helpful was going to a university clinic, there to the department of infectious diseases, make an appointment, tell the doctor the symptoms that matter (make it precise, really think hard to know what to leave out and what not!) and let them choose the tests they deem necessary. You will not get a recognition for ME/CFS, but they can rule out other "common" diseases.

    On a broader scale, this is what I did (or will do):
    Check for "common" known infectious diseases at a specialist
    Check thyroid and/or adrenals at an endocrinologist
    Check for heart problems at cardiologist

    If you are lucky, they will find something "common" and known they can take action on but don't expect ME/CFS treatment from these specialists If your are really lucky, you find someone in your area who deals with ME/CFS.
    ahimsa likes this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    If natural killer cells dont work which is a commonly found immunological find then i would say we are immunocompromised as nk cells are required to kill infections and cancers. multiple infections can further compromise our immunity. You could say that nk cells are dysfunctional but also call it a defiency as they dont work and do their job properly. In japan they call in NK defiency syndrome. Im not sure about this but maybe the dysfunction they refer to in cfs is t-cells as they are commonly found above and or below range but nothing specific in cfs. Latest study from Bond Uni is also finding cd8 t-cells dont work either in cfs patients, so quite possibly we have two problems nk cells and cd t-cells, even though numbers of nk and cd8 cells are normal, there not working and doing their job, for some reason.

    We arent dieing of this disease quickly like other immune defiencies, but slowly as our body slowly becomes dysregulated.

  5. ArgyrosfeniX


    River Falls, WI - USA
    Having those two lines together made me laugh heapsreal. Thanks! :D
  6. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    There are several points I think worth mentioning.

    I think the question is misleading: are viral titres important? Yes and no.

    Viral titres show active viral infection. Antibody titres show the adaptive immune response is activated - it does not always have to be the specific virus that is activating it though.

    The other issue is tissue viral load. There is a clear disconnect in ME between viral load in tissue and blood. Blood levels can be normal when tissue levels are crazily high.

    I think ME qualifies as an immunosuppressive disease. Immunosuppression does not mean the entire immune system is down. Typically only a component of the immune system is down. Which component determines the extent and severity of the response. Classic cases that have been well studied do frequently lead to death. However many ME patients have died from it, just not so often as other immunosuppressive diseases. In our case we have a deficit of active NK cells. Its not typically fatal. It is typically disabling, and sometimes this leads to death.

    Nobody ever died of AIDS directly, or at least not to my knowledge, they die of complications of AIDS. Its the same for ME I suspect - secondary effects accumulate and if acute enough are fatal. This includes cancers which can proliferate more in ME due to low NK function I suspect: this needs more research. These debates are about technical definitions of terms, which vary with context. Our NK bright cells are down, their function is down, to me this directly implicates immunosuppression.

    It is looking like NK cell numbers are not the issue - many of us have normal numbers. Its about what is happening with those cells, their failure to activate and convert to bright cells.

  7. niall


    Thank you Heapsreal and Alex 3619 in helping me to further understand this perplexing and insidiously debilitating illness.

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