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!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Xmrv not very pleasant news

Discussion in 'XMRV Research and Replication Studies' started by Gerwyn, May 15, 2010.

  1. Rosemary

    Rosemary Senior Member

    Messages:
    193
    Likes:
    0
    HIV infection has been difficult to cure because of uncharacterized reservoirs of infected cells that are resistant to antiretroviral therapy.
    This study shows that some hematopoietic stem cells are latently infected and may therefore constitute such a reservoir.

    HIV-1 infects multipotent progenitor cells causing cell death and establishing latent cellular reservoirs

    http://www.nature.com/nm/journal/v16/n4/abs/nm.2109.html?lang=en#/
     
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    It sure is a sticky area and I sure hope that lymphoma or other cancers are not associated with most people in this disease. Dr. Peterson found a huge increase in lymphoma in the Incline Village patients but I wonder why that hasn't been duplicated elsewhere - surely one of our other physicians would have noticed these unusual lymphomas cropping up. I hope that it is something more specific to those patients he was studying.
     
  3. Gerwyn

    Gerwyn Guest

    XMRV is an onco virus.All Mulvs are pathogenic. A higher rate of various cancers should appear in family members along with a higher level of cytokine induced illnesses.There are a vast range of potential health issues ranging from the minor to more serious conditions
     
  4. katiemoomoo

    katiemoomoo

    Messages:
    24
    Likes:
    0
    ENGLAND UK
    I had leukemia 19 years ago when i was 7 months pregnant. and Never fully recovered. But always thought it was the treatment. i had a brief break from lots of symtoms after 6 years recovering, or so i thought. then a shingles virus and hormone change. and have been in a ME/CFS flare for nearly 6 years. i have often wondered if they are related.
     
  5. redo

    redo Senior Member

    Messages:
    830
    Likes:
    89
    The medication for NHL also works very well for CFS for months at a time.
    Dr.P. found that Non-Hodkins Lymphoma (NHL) was appearant in unexpecedly large numbers with his CFS patients.
    When he told dr. Mikovits about this, she said "that's a virus", and that's even before she made the XMRV discovery.

    It might very well be that XMRV can cause this in some of the CFS sufferers.

    But if they both are caused (or co-caused) by XMRV, it would not be unexpected that the medicine which works for NHL could also work for CFS sufferers.

    So what happens when they give NHL medication to people who don't have NHL, but have CFS?
    They get a whole lot better for months.

    I think that treatment study deserves a lot more attention. It's a small study, three people, but nevertheless, it works. MS patients have for long had the possibility to take a somewhat similar drug (the monoclonal antibody Natalizumab) and get a lot better... If I had the opportunity I would do it. No doubt.

    I am not saying that Mikovits is saying that NHL comes from XMRV. But I think it's plausible that they are connected. Retroviruses can cause things like that.
     
  6. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    Other physicians may well of noticed it if their patients stayed around long enough to be followed up years later. How many of us stop seeing our consultants when they can't help us any further?
     
  7. biophile

    biophile Places I'd rather be.

    Messages:
    1,399
    Likes:
    4,850
    I can think of 2 important complications arising from XMRV being confirmed as significant for ME/CFS.

    First, many of us are intolerant or sensitive to medications in general. Current antiretrovirals may be unacceptable for many patients. If XMRV turns out to be important in the perpetuation of symptoms as opposed to a passenger virus or something that caused damage long ago, our intolerance or sensitivity may pose a direct obstacle to treatment and therefore will be taken more seriously and given the research attention that it deserves.

    Second, if we are XMRV+ according to future standardized tests, do we wait for research to confirm the presence of XMRV in sexual fluid before informing previous sexual partners they may be infected?
     
  8. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    27
    The jury is still out for an XMRV/CFS connection in the scientific community.

    But if an XMRV/CFS connection is validated, and also an XMRV/cancer connection is established from future research, then where do you think that will ultimately lead in terms of public health issues and perceptions?

     
  9. Daffodil

    Daffodil Senior Member

    Messages:
    2,921
    Likes:
    895
    bluebonnet....if you have cancer somewhere in your body already, and you get stem cell treatments, it would ecourage the further growth of the cancer.

    sue
     
  10. acer2000

    acer2000 Senior Member

    Messages:
    602
    Likes:
    253
    This is a good question. A more fundamental question is - do we wait for a study confirming the testing methodology for the presence of XMRV, and also its association with disease? Right now there is but one study associating XMRV with CFS patients, and one lab that claims to be able to find it. We are all hoping this works out and for various reasons the other studies could have been inaccurate, but as it stands now nobody has confirmed any of this and published.
     
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,113
    Likes:
    957
    Concord, NH
    Count me in! I already fired 1 so called specialist, added another 2 years ago and then 2 more last fall with a Major Flare up! I only see 1 regularly though.

    I have only had this disease 7 years though.
     
  12. minimus

    minimus

    Messages:
    31
    Likes:
    3
    Anyone who has followed research about CFS or who has been sick long enough should be well aware that the immune system abnormalities found in CFS should raise the risk of cancer.

    Every year I go for my annual visit to Paul Cheney. One of the forms his office hands out every year is a list of medical tests that he wants his patients to have done on a fairly frequent basis (i.e. blood work every year, chest X-ray every two years, upper endoscopy every two years, colonoscopy every two years, pelvic ultrasound every two years). It doesn't take a genius to read between the lines about his rationale for recommending these tests with such frequency.

    I suspect he has seen cancer develop at an elevated frequency in his practice.

    He also used to talk quite a lot about all the immune system abnormalities known to occur in CFS, including the pronounced shift from TH1 to TH2 immunity, low NK-cell function, high oxidative stress, and inadequate P450 conjugation, that, regardless of underlying cause, theoretically raise the risk of cancer.

    He once joked to me that private insurance companies will both deny disability claims and life insurance coverage to anyone with a diagnosis of CFS. His point was that these insurers are being self-contradictory in their actions. But my takeaway is that I am more likely to die at an early age than a healthy person.

    Similarly, Leonard Jason wrote a paper a few years ago which noted people with CFS who die from cancer tend to be a lot younger than for the general population. Specifically, average age of death from cancer among CFS patients was only 48, compared to 72 for the entire US population. Although this doesn't prove that CFS causes cancer (since it doesn't measure incidence rates), it is cautionary.

    A cancer diagnosis would scare the hell out of me. My life may be fairly miserable, but it still seems better than the alternative. That said, I feel somewhat resigned to the fact that at some point my illness will progress to a life-threatening illness.
     

See more popular forum discussions.

Share This Page