Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
Discuss the article on the Forums.

News of replication of WPI XMRV study...

Discussion in 'XMRV Research and Replication Studies' started by Wildaisy, Nov 26, 2009.

  1. Wildaisy

    Wildaisy Guest


  2. MEKoan

    MEKoan Senior Member


    Thanks MUCH!
  3. Katie

    Katie Guest

    Someone calm me down and say something sensible, please, I can't get excited yet.

    *dances a little*

    Is that light at the end of the tunnel I see?
  4. jenbooks

    jenbooks Guest

    I wonder who he spoke with...
    AZT is so toxic. The question is can you pulse some relatively nontoxic antiviral (XMRV has a low mutation rate) as a monotherapy--get it down, go off, go back on when it starts to replicate again? Or do you have to be on something toxic, with serious potential side effects of it's own, for good?
    Much research to be done.
    And where does chronic lyme intersect? How many of us have XMRV? And is it transmitted in ticks.
    I still have so many questions...
  5. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina
    !!!!!!!! :D

    I wonder if this is why HHS started the task force in the other thread!
  6. anne

    anne Guest

    Before I get excited (which I already am), is this person trustworthy?
  7. _Kim_

    _Kim_ Guest


    What a wonderful find! What a gift on this Thanksgiving day. I'm smiling.

    Dr. Luckett - thank you!

    There is such surety and promise in his message. It's not a matter of "if" HIV drugs will work, but which ones.
  8. jenbooks

    jenbooks Guest

    Thanks, Daisy, I'll look it over. Wish someone would test ticks. I'm not keen on spending money on a test for XMRV until I find out if its transmissible in ticks and that there is a therapy I might consider. To my mind a two-pronged therapy is probably the best because any virus *can* mutate. Ross on his Vistide thread is saying he's going to have to go off Vistide soon. That's scary as you face a possible relapse.

    I'm not saying the news isn't full of potential. I just personally have many questions in my own case.

    ETA: He looked at chicoric acid in echinacea. One of my medicaments is echinacea purpurea root--freeze dried--from Eclectic Institute.
    I'd just love it if we could resesarch less toxic ways to inhibit the virus. (That post of his is a few days ago).

    Happy Tday
  9. _Kim_

    _Kim_ Guest

    I would still put this in the category of rumor, but there's no reason to doubt Dr. Luckett's sincerity.

  10. _Kim_

    _Kim_ Guest

    I'm finding it interesting too. I like his hopeful prediction about anti-retroviral treatment:
  11. Esther12

    Esther12 Senior Member

    I'm still a bit terrified that the XMRV research will turn out to be nonsense, and serve to further discredit CFS research generally, leaving us totally in the hands of the quacks.

    Google search has become a compulsion in the last month. Any sort of confirmation would be great, even if it was only for a sub-section of sufferers that I may not be a part of. It would at least mean I could be confident things wouldn't get any worse.

    Leak some preliminary data!!
  12. _Kim_

    _Kim_ Guest

    Jen, he's thinking about ticks:
  13. jenbooks

    jenbooks Guest

    Kim, yeah but...

    WPI...and others, aren't. Nobody has tested ticks yet. I was going to push it but I went away, got stressed out, had too much work etc...I was going to try to get somebody to think about it, maybe Eva Sapi or better yet Ian Lipkin. Maybe I should. I'm just stressed out now.

    ETA: I wrote Dr. Lipkin. At least I'll find out whether he's considering it. He's the tops in the field, no holds barred.
  14. bakercape

    bakercape Senior Member

    Cape Cod. Mass
    Ticks need to be tested

    If XMRV came from mice it would be worth looking into if ticks transferred it from mice to humans. Maybe ticks are carrying XMRV like Lyme. My whole family was bitten by ticks a lot growing up on the cape as a young child. None of us have never tested positive for Lyme and I did not get CFS until I was older and living in Maine. My whole family got CFS following an EBV infection several years removed from our life on the Cape. Could EBV have activated a ltent XMRV virus given to us by ticks who had fed on Mice? Could this explain the people who have symptoms of Lyme but do not test positive for Lyme following tick bites. These are questions worth looking into.
  15. jenbooks

    jenbooks Guest

    Yes the question is can ticks be a competent vector for XMRV?
  16. Realistically speaking - are we talking 3 to 5 years before the masses would be allowed to try a new drug?

    We've waited ages on Ampligen and never gotten anywhere with that. :(

    Thank you.
  17. mezombie

    mezombie Senior Member

    East Coast city, USA
    It's my understanding that there are a number of retroviral drugs already on the market that might be effective against XMRV. So they could be prescribed "off-label". Unlike Ampligen, they have already been approved by the FDA (Food & Drug Administration). It is up to doctors to prescribe them off-label; the FDA does not control that.

    Don't be surprised if treatment turns out to be a mix of drugs. That's certainly the case for HIV/AIDS.

    Now to the situation in England... (sigh). What a mess. Hopefully, should causality between XMRV and ME/CFS pan out, even your not so nice NICE will come around.
  18. hvs

    hvs Senior Member

    I'd think that the fact that Peterson, Klimas, Lerner, et al can put CFS into remission for years using herpes-family antivirals hints that we would not have to be on an anti-retroviral every day the rest of our lives.
  19. Thanks, good point on the the fact these are existing drugs proposed for XMRV. :eek: I'm surprised some patients are apparently taking AZT already, that's either very brave of them or rather silly. (In the early days of HIV, many patients died of taking AZT so people with ME CFS need to be very careful).

    In the UK, NICE (National Institute of Clinical Excellence) cannot come around to our side of thinking as they're in the middle of tax-payer funded state driven psychobabble - due to prove ME CFS is insanity, in 2012.

    Legally they can get away with this quite happily, as they have openly stated that 'CFS/ME' is '''long term tiredness'.

    NICE block people in the UK dying of HIV/AIDS to get drugs (postcode/zipcode lottery), that many other European countries hand out for Cancers and other diseases, yet the UK rations Cancer drugs until NICE approve them for 'cost effectiveness'. I cannot imagine any American walking into the WPI in years to come with a doctors note for IV anti-retrovirals and the desk clerk says, sorry it's not cost effective. :rolleyes:

    Muscular Dystrophy drugs blocked

    MS drugs blocked
    Also here.

    Alzheimer's drugs blocked

    Arthritis drugs blocked

    Prostate cancer drugs blocked

    Cancer patients denied life saving drugs

    Bowel cancer drugs blocked

    Breast cancer drugs blocked, and only approved (with conditions) after EU ruling forcing it.

    If they can do that, they'll never move on XMRV induced immune supression, ever. Why would we get special treatment, when we get no treatment.

    Hence we're all coming to America somehow on a banana boat to import sarcasm to the state of Nevada. (Now where's that short sighted stalker I met in a Reno chat room when I need her...........) ;)
  20. ramakentesh

    ramakentesh Senior Member


See more popular forum discussions.

Share This Page