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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Question on XMRV

Discussion in 'XMRV Testing, Treatment and Transmission' started by Kati, Nov 5, 2009.

  1. Alice Band

    Alice Band PWME - ME by Ramsay


    The interview with Dr Mikovits I heard said that XMRV had a cortisol receptor. People with CFS who are tested usually have low cortisol and we are all wondering at the implications of this.

    I didn't hear her say that there was a "wider stressor" implication.

    Could have been a different interview (there are so many). Can you remember which one mentioned wider stressors?
  2. dannybex

    dannybex Senior Member

    Hi Alice,

    Yes, many with CFS test with low cortisol, but often have high cortisol levels in the earlier stages...everyone's different of course. My cortisol levels were sky-high when last tested in 2003. I was quite surprised as I thought they'd be low, but if I can save up some $, I hope to get retested soon, and perhaps they'll be lower.

    And yes, I don't think Mikovits say anything about 'wider stressors'. That's just my comment that there are probably many other factors involved, which I gradually gathered from the people I know who have actually recovered, and those who consider themselves 70% recovered after being sick for years...as long as 17 in one case. That's only about 8 people, but I try to learn from them, and go from there.

    They all had different and mutliple issues (like those mentioned above) that had to be tested for and addressed, including lowering daily stress levels, taking 'active rests' multiple times a day until they had improved enough to handle 'regular' stress. And even then, some still stop and take breaks, or avoid stressful people/situations as much as possible.

    Also, others on this board have improved to some extent by doing the same. But it is difficult, as we all have different 'stressors', different bugs, different life situations...and most docs don't know what to test for or what tests to order. And worse, most of those tests aren't covered by insurance, certainly not medicaid.

    Can't just take a pill (or pills) and keep pushing ourselves...;)
  3. Mark

    Mark Acting CEO

    Sofa, UK
    I recall a recent contemptuous post ridiculing the concept of 'cortisol receptors' (and suggesting that the WPI are therefore idiots). Presumably technically an accurate point, but an ignorant one as well, since 'cortisol receptors' is obviously just a shorthand description used by those of us who are interested in the science but don't always have the technical background needed to discuss these matters rigorously.

    As I remember it, the WPI have reported that they can induce replication of XMRV by adding cortisol (or cytokines or hormones). If 'cortisol receptors' is indeed a daft term, then I'm sure the WPI didn't use it!

    Perhaps some of us are reading too much into this 'stress' association - I don't know whether it really does extend to some of the other 'stressors' that we've been thinking about. But the WPI researchers are clearly confident that these 3 factors that induce XMRV replication are consistent with known CFS symptoms (such as post-exercise fatigue). So given that there is a fairly well-known association between CFS symptoms and stress, I feel pretty confident that these triggers are crucial to triggering CFS symptoms in XMRV+ patients.
  4. Mark

    Mark Acting CEO

    Sofa, UK
    Dannybex: the approach you've described is exactly what I've done myself: one by one I've eliminated foods, chemicals, and activities that trigger worsening of symptoms, and each time I've identified and eliminated one of these, my general condition has improved another notch. So what you say makes perfect sense to me.

    However I think where we need to be careful is associating these 'environmental stressors' with cortisol. That might sound scientifically illiterate to some. Rather, these 'environmental stressors' are presumably inducing an immune response, and the perversion of our immune systems by XMRV means that some aspect of the immune response then causes XMRV to replicate.
  5. Advocate

    Advocate Senior Member

    I don't know. I'm just at the part of the book where the infected blood (they didn't yet know about HIV) was killing the T-lymphocytes. They had to keep replenishing the lymphocytes.

    This was a surprise to the French researcher, because HTLV had the opposite effect, causing lymphocytes to multiply out of control. At first she thought she might have made a mistake.
  6. I only recently started reading about XMRV so maybe my question is a silly one...but I am seeing my PCP again on Friday and going to ask she test me for Lyme, for EBV (I don;t recall that I was ever tested for either). Is XMRV something most clinics/hospitals would have the capability to test for, or is it drawn and sent to an outside lab? Has knowledge about it progressed far enough yet that I can ask she add that to my lab list?

    I know, I should ask HER, lol. Still, wondering if any of you have been tested, and how did you go about it?
  7. _Kim_

    _Kim_ Guest

    At present there are two labs that are offering the XMRV test. WPI has endorsed VIPdx labs. There is currently a six week waiting list to be tested and several of the forum's members have or will be tested soon. Cort set up some polls for us to post our results. They are in the XMRV section and are up top as "stickies".

    There is another lab offering XMRV testing called Cooperative Diagnostics. Dr. John Coffin, the virologist who wrote the accompanying editorial to the WPI Science article spoke at the CFSAC meeting on Oct 29th and recommended that patients not use this lab as it was unknown if the tests would be valid. We had a discussion about this lab a couple of weeks ago.

    Your doctor will not be able to add XMRV to her lab orders for you at this time. If you want to be tested now, she'll have to agree to sign-off on it and you'll have to call VIPdx to be put on the waiting list.

    Hope this answers your questions. They are not silly at all.
  8. PoetInSF

    PoetInSF Senior Member

    No that I don't trust VIPx, but I don't think commercial tests (certified by WPI) will count as a validation of WPI study. And I sure hope WPI won't use it as such. What we need is an independent and reproducible validation by a 3rd party.
  9. Mark

    Mark Acting CEO

    Sofa, UK
    True, those VIPx tests won't validate anything to the scientific community (and if you still have doubts whether the WPI will claim that they do, then read the full WPI study and realise that, while WPI may be a private lab and therefore not as trustworthy as a government lab, these people are very definitely not idiots). But if Levi tests positive, he will know what's what, even if the scientific world doesn't know it yet. At this stage, many of us are more interested in the truth than in what the authorities are prepared to rubber-stamp.

    We already have independent validation anyway, by the National Cancer Institute; they just haven't gone (very) public yet, presumably because scientists like to string these things out. (They probably don't consciously drag their feet, they've just been very well trained in the many reasons why they should keep their findings to themselves as long as possible, and I doubt they even notice how much all this dithering is in their financial interest). I guess what you mean is that we need some more independent validation.

    Levi's hopeful that "patients will come out of the woodwork and inform the science on this matter". Sadly, you're right on that, PoetInSF: it's a bit naive to think that patients' experiences will count as 'evidence'. They, and the WPI work, will only inform the science in the sense that they are the ones who discover the truth. The real work will come over the next few years, as a variety of well-paid scientists conduct expensive and lengthy studies to simultaneously prove and disprove the findings.

    But the patients will at least be able to inform themselves, and we will be able to know more about our conditions, sooner, than the doctors and scientists do. And surely we're all used to that...

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