International ME/CFS and FM Awareness Day Is On May 12, 2018
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how do they prove that xmrv is causal for CFIDs or Prostate Cancer

Discussion in 'XMRV Testing, Treatment and Transmission' started by Navid, Apr 6, 2010.

  1. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA

    I think "impatient, sick mother of young kid" is an excellent credential for finding a cure for a disease like this. You have a lot of credibility with me!!!
  2. Adam


    Sheffield UK
    Can I have some of your pie Lisag - please?
  3. hvs

    hvs Senior Member

    I do indeed think that clinical experience is definitely part of "proving" a bug causes a disease. There can be lots of lovely papers out there but practically speaking docs need to see good results in their offices.
  4. rebecca1995

    rebecca1995 Apple, anyone?

    Northeastern US
    Forget all the scientific stuff, folks! XMRV will be proven as the cause of CFS when a celebrity appears on the cover of People Magazine proclaming, "I'm XMRV-positive." :D:tear:
  5. MaryAnn


    True enough also sounds like Dr. Judy is connecting autism to XMRV and there are celebs' children with it, e.g Jennie McCarthy
  6. PoetInSF

    PoetInSF Senior Member

    The link is not working for me, but maybe someone should send it to Peterson or Lerner. They are not testing, but actually treating CFS patients with antivirals without showing that the virus causes CFS.

    The unethicality of testing without compelling cause probably depends on the side effect. Is it unethical to test Asprin without showing a reasonable cause/effect? Probably not. AZT? Probably yes. Anything that lists death as a possible side effect probably would not qualify as being ethical, and some antivirals do have that.
  7. bullybeef

    bullybeef Senior Member

    North West, England, UK
    An excellent thread and topic, and really interesting reading how they go about proving cause and effect.

    I think the way I view it is: If I eventually test XMRV+, then I will have XMRV (or maybe XAND), and the use of the acronym ME will drift away, and disappear in the annals of history, just like GRID (AIDS) did. XMRV won't just be the cause, it will be part and parcel (if obviously proven to be so), and it will have always been there, mistakenly called something else.

    I was quite surprised to learn that AIDS was discovered before HIV. So people had AIDS, and no one knew why. But AIDS wasn't it's name then; it was called GRID (Gay Related Immune Disease, as probably most of you know, and even more disparaging then CFS). So when they discovered HIV caused GRID, its name was changed overnight. Like how XMRV wont cause ME, or CFS, but maybe XAND, or some other acronym they will pluck out of the air.

    So when people are sick, and they are unaware of the cause, it seems to receive a part time name. The problem with ME is, it has been in recorded history for over 100 years!! And to make matters worse it was renamed CFS, just to confuse everyone.

    Proving XMRV causes disease will take time simply watching what it does in experiments. But it is obviously a smoking gun, and called it what you want. Whether it's ME, CFS, XMRV, or XAND, I will still feel lousy tomorrow, and the day after.

    But we have to call it something. When people who see me using my cane for the first time, I just say my legs are shot. It's easier, and I don't do small talk these days. But after I'm tested, and the news is what will all expect it to be, well, just try to shut me up then. When I have finished telling people about XMRV, their ears will be ringing!!
  8. Robin

    Robin Guest

    Here's the link:

    They're not testing drugs in patients.

    Ethics in drug trials hinge on plausibility. If it's confirmed that XMRV is found in CFS patients, drug researchers may have enough scientific basis to start drug trials in human patients. They may need an animal model too but I'm not sure. (The plausibility must be applied to treatment -- it would be unethical to do a trial for a treatment that has a low possibility of success. For example, a trial on homeopathy in cancer would not be ethical.) So, what they're doing by testing the drugs in vitro is establishing plausibility on the treatment side. It does without saying that Ila Singh, as a pathologist, must suspect plausibility of XMRV causing will be established in future studies for her to proceed with treatment testing.

    A lot of drugs that have potentially severe, carcinogenic and fatal side effects are FDA approved; on that basis alone it's obviously not enough to declare a drug trial unethical. Incidence would come into play, ie if ALL or MOST of the patients died or blew out their kidneys that would be unethical. AZT is already on the market so it has met minimum standards for safety. Finally, there is informed patient consent.

    ETA: Peterson and Lerner do test evidence of elevated herpesviruses antibody before they treat.

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