1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

New Update From Dr. Jamie: XMRV and antiretrovirals

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by shannah, Dec 30, 2010.

  1. CBS

    CBS Senior Member

    Messages:
    1,379
    Likes:
    313
    Western US
    Very little has been done in this area. The only article of note was by L. Jason and it is limited - "The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS." This is clearly a non-representative sample it but at present, ME/CFS is never listed as a cause or a contributing factor to death. An additional problem is the cohort issue. ME/CFS by what definition?

    That said, the following paragraph concerns the ages of death of those patients included in the Jason study:


    http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Causes of Death - CFS Patients.pdf

    Health Care Women Int. 2006 Aug;27(7):615-26.
    Causes of death among patients with chronic fatigue syndrome.

    Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S.
    DePaul University, Chicago, IL 60614, USA. Ljason@depaul.edu
    Abstract

    Chronic fatigue syndrome (CFS) is a debilitating illness affecting thousands of individuals. At the present time, there are few studies that have investigated causes of death for those with this syndrome. The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS. There were approximately three times more women than men on the list. The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The implications of these findings are discussed.
     
  2. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    267
    Long Beach, CA
    I think Dr Jamie makes an important point when she says "Quantitative measures will be necessary." Considering the relapsing/remitting nature of the disease, add to that a possible Herx-type reaction if the immune system begins functioning again, and possibly a slow response to the antiretrovirals, and I don't see how you can possibly have useful clinical trials until there's some accurate way of measuring viral load.

    I've been thinking exactly the same thing. Even if retrovirals work to arrest XMRV/MLVs, it's possible that it won't reverse damage already done to organs. For instance, if XMRV crosses the blood/brain barrier (as seems likely), there could be damage to the hypothalamus, leading to the out-of-whack HPA axis we see in ME/CFS. Even if the virus were eradicated, how long would it take the body to repair that...if it could at all?

    I think that if XMRV is damaging our immune systems, then getting it under control, thus allowing the immune system to fight off the myriad infections that ME/CFS patients have, would have to make us feel better. But I don't think it's going to be a magic bullet for those of us who have been sick for a long time. I think for many of us, recovery will be a long, slow road (and we may never completely recover). But I sure would like to get started along that road. Frankly, even if I don't get "well," just getting somewhat better sounds darned good to me.
     
  3. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,535
    Likes:
    2,093
    London
    If worried about the "relapsing/remitting" nature then use patients like me who have never has a remission. In MS they often tailor the type of patient in that way so they is a precedent.

    XMRV+
     
  4. undcvr

    undcvr Senior Member

    Messages:
    797
    Likes:
    133
    NYC
    I still think that it is going to turn out to be a retrovirus bcos they target immune cells alot. Some docs r looking into entero retrovirus as well. It is knw to cos gastrititis or IBS too. So there might be a connection there as well and since they are all retroviruses the same ARV might work on some of them. Personally for me, i think cfs is an immune system disorder which allows all these infections into us and depending on what is attacking u at that time or where u are, diff viruses can then set it. It explains the myraid of different symptoms that we have.
    If that is the case then XMRV is a cross species virus ( murine: from mouse) so it might not be it. It cud be too new. Of course that is not to say that it has been around all this while and just happened to be opportunistic. But it seems more likely to be a virus that human being have been exposed to for a long time that MOST OF THE POPULATION have already built resistance to, is infecting us. In that case I wud look at older viruses, and viruses that have been with us for a long time.
    It still has to be a retrovirus because retroviruses seem to have an affinity for our immune systems, *huge sigh here* and this is what is happening to us.

    Someone on PR posted that Joe Dirisi tested several cfser with the Virochip. XMRV wasnt that consistent, instead HERV was. (Human Entero retrovirus) another one that turned up quite abit was HGRV (Human Gamma retrovirus).

    What really really concerns me is that sooner or later everyone with cfs will evetually sucuumb to the virus attack and be diagnosed with either lymphoma or leukemia. It makes sense cos the virus hides out in the B cells and as I understand it in CD57 cells. And like many other viruses that hide out in their host cells (human papilloma - cervical cancer), (HHV8 - Kaposi) they eventually turn them cancerous.
     
  5. shannah

    shannah Senior Member

    Messages:
    848
    Likes:
    179
    Hi ix,

     
  6. Rooney

    Rooney

    Messages:
    75
    Likes:
    19
    SE USA
    I wonder when this new assay will be available at VIP DX?

    Waiting for the better test.
     
  7. Jemal

    Jemal Senior Member

    Messages:
    1,031
    Likes:
    60
  8. alex3619

    alex3619 Senior Member

    Messages:
    7,723
    Likes:
    12,641
    Logan, Queensland, Australia
    Hi CBS, I have confirmed that I was wrong, that it is stomach biopsies KDM is doing. I got this, indirectly, from a patient. Bye, Alex
     

See more popular forum discussions.

Share This Page