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XMRV Link Gives False Hope for CFS

Discussion in 'XMRV Testing, Treatment and Transmission' started by Fejal, Sep 11, 2010.

  1. ukxmrv

    ukxmrv Senior Member

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    Thank you Daffodil for your kind words earlier on.

    The XMRV news has made a huge difference to me, not only having the + test but that fact that someone was working on something new.

    Those of us who have had the disease a long time were in a difficult position before the XMRV paper was published. We had been trying the many different protocols and treatments for a long time. In some cases they had made us worse and the constant struggle to keep going as we became sicker, old and poorer was terrible. There was nothing new to try.

    Although XMRV may not be an answer to everyone or it may just be part of the puzzle, I feel better that the WPI and other organisations are looking at ME/CFS patients.

    In the UK it's a huge difference that papers are reporting anything physical with this disease. Even the reports that it "could just" be a passenger virus on an immuno-compromised group is a big step forward in a country that does not recognise immune system problems in patients here.
     
  2. floydguy

    floydguy Senior Member

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    Personally I see absolutely no evidence that people are putting all their eggs in one basket. I am in touch with quite a few people and as far as I can tell not one has put all their hope in XMRV.

    Whether you believe in XMRV or not you should being doing everything you can to create a buzz around it. At the very least a lot of money will flow into XMRV and CFS that would not exist otherwise. This may reveal more clues about CFS even if XMRV doesn't pan out. Otherwise it could be another 20+ years of no progress.

    To slam XMRV is to prefer the status quo. Don't see how that helps anyone. Where's the hope in that??
     
  3. Fejal

    Fejal *****

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    I think that's already been accomplished (getting the word out about XMRV). We need to be objective and not exaggerate the importance of discoveries lest people be misled. Also, if the XMRV lead dries up (which it likely could) then there would be a waning of interest. I'm sure you've read the posts in the antiviral category from patients who have taken them, so far antiviral drugs have been useless. So rather it is better to also promote other theories in addition to XMRV.
     
  4. Dreambirdie

    Dreambirdie work in progress

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    I agree. I think XMRV is our ace in the hole at this point, as regards the buzzzzz factor especially.
    That's what I've been putting out there in all my advocacy work--the video, letters to media and government officials.

    For now we need to stick to the point that will bring us the most attention and research, and XMRV is IT.
     
  5. floydguy

    floydguy Senior Member

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    What other theories do you speak of? I am not familiar with others that are generating any interest. You seem to think this is going to be easy. Like there will be a discovery and everyone will wander down to the local CVS and take an existing pill and everybody will continue with their life. I don't think it's going to be that easy. Furthermore, AVs and ARVs have been helpful for some - not useless across the board. Don't hold your breath for miracle cures any time soon.
     
  6. mojoey

    mojoey Senior Member

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    The mixed responses so far on HAART don't at all suggest that a retrovirus isn't the lynchpin for at least a subset of cfs. This is a completely different virus than HIV, a gammaretrovirus that may only replicate during mitosis, is rarely in peripheral blood, and whose infectiousness may be primarily determined by its gag envelope protein. None of the three drugs being used so far are optimal for these characteristics. Until drugs that are suited for its characteristics are used and patient outcomes evaluated, it is equally premature to say a retrovirus is not causative as it is to say it is causative.
     
  7. ukxmrv

    ukxmrv Senior Member

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    Fejal, it feels are if you are looking at this without considering the lack of information that you have with actual XMRV+ people and their experiences. You seem to lack the knowledge of how long term some of us are and how many things we have tried. There is was a survey created and I hope to see the results one day.

    I've had my best luck so far with anti-viral drugs and immune modulators but it's no where near enough improvement or a cure. If XMRV doesn't work out for me that's exactly where I will continue looking and I hope new things come up in that area as it's been the best so far. Very few things have helped me and many have harmed.

    It may be the same for other XMRV+ or they may have other treatments that helped/didn't help. We don't have the survey results yet.

    XMRV+
     
  8. shannah

    shannah Senior Member

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    UKXMRV - Can I ask which immune modulators have been successful for you?
     
  9. ukxmrv

    ukxmrv Senior Member

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    The most luck I have had so far is with Valtrex and Imunovir. I'd like to try others and am considering where to go and who to see. I'm in the UK so little money and few choices.
     
  10. Cloud

    Cloud Guest

    I was diagnosed by Dr Peterson as having "Classic Severe ME/CFS". I value his opinion over all others in this arena. I have never recognized "fatigue" as a significant symptom because it's the understatement of the century. I would agree with Tan that how do you say to a guy with 17 years into this thing that they may have an "easier recovery", lol. Oh well, made me smile.

    Also, anti-virals have been by far my most effective treatment. Brought me back from the abyss.
     
  11. shannah

    shannah Senior Member

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    Have you tried Equilibrant. It's apparently an immune modulator and is available without a prescription by ordering from the internet.
     
  12. pine108kell

    pine108kell Senior Member

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    Regarding the first post of this thread: This type of analysis is the same kind of thing I have been reading about for the 8+ years I've been sick. As for the MP, if people are getting better on it, it sure is a very small minority. No one even knows what the MP is because it always changes and everyone who doesn't improve is told they are not doing it right and/or locked out of the intolerant forums. Its been around a while and I see no evidence that it works, except maybe a very small minority. (Frankly, I thiought the MP was dead by now).

    As for taking milk thistle and a few other herbs, we've all heard that too. I agree, XMRV very well may not be the primary problem, but we need to move on to new work. A few herbs, some antibiotics, maybe help some, but these have been tried by a great many of us and it doesn't usually lead to great stories. I'm not trying to start an argument. I've read posts like this for years and years now and this looks like the same thing.

    I wouldn't put all my eggs in the XMRV basket, but we need to find some other new baskets that maybe XMRV will reveal.
     
  13. alex3619

    alex3619 Senior Member

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    Hi Pine108kell, I am hoping that if XMRV doesn't work out it will not just lead to new baskets, but a basket making factory. Meanwhile, 90% of my attention in on XMRV and its siblings. Bye, Alex

     
  14. ukxmrv

    ukxmrv Senior Member

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    Thanks Shannah, great idea, I'll keep that in mind. Forgot to say that I was also taking Artusanate and that started well but ran out.

    If XMRV doesn't turn out to be the answer, I'll still keep looking and trying things. I'm grateful for anything that helps just a bit.
     
  15. Fejal

    Fejal *****

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    I was locked out after I told them I was benefiting from milk thistle and flax oil and proved with references that the MP makes patients very inflammed due to omega-3 fat deficiency, increasing their pain. What you say is very true.

    Time will tell if my hunches and research prove fruitful. Trying can't hurt.
     
  16. Chris

    Chris Senior Member

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    Hi, UKXMRV--I am interested in what you say about Artesunate--started well but ran out; do you mean you are out of the stuff, or that you ran into problems? I am interested because I am one of two of us who took it for a while, seemed to improve, and then had problems--gut problems, and maybe neurological--balance, that kind of stuff. So I have with regret stopped--and am still intrigued by what Cheney has said of it. So could you explain that "ran out" for me?
    Thanks, and best wishes, Chris
     
  17. aquariusgirl

    aquariusgirl Senior Member

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    wondering the same thing myself chris......
     
  18. ukxmrv

    ukxmrv Senior Member

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    Sorry for the little info , I'm feeling a little guilty about taking this thread off topic and away from the original question.

    No, I've just run out of the Artesunate and not been well enough/had enough money to buy some more.

    One of the lucky ones as no gut or neurological symptoms. I did have what could have been a hormonal reaction (change to monthly cycle) but that only occured at the start and then calmed down.

    Any other questions pls feel free to send me a personal message so this thread can continue.
     
  19. Fejal

    Fejal *****

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    Best to start a new thread when a new topic arises.
     
  20. Fejal

    Fejal *****

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    For all the viroogists here. Does XMRV copy number wax and wane or is it a constant low number? If constant, can you name any other pathological virus that causes disease at low copy numbers?
     

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