XMRV test in the UK?

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Dec 29, 2009.

  1. ladybugmandy

    ladybugmandy Member

    in his blog, this fellow claims to have been connected to someone who is arranging for blood to be sent from london to the US for XMRV testing.

  2. QuayMan

    QuayMan Member

    Don't know too much about it but he may be talking about:
  3. ladybugmandy

    ladybugmandy Member

    what is happening in the UK is incredible. just incredible. i really was stupid before..thought things like this only happened on the x-files. i used to pooh pooh conspiracy theorists...ugh.

    i am glad you got the chance to send your blood in even though it might be spoiled by the time they test. my blood reached a few hours late too because of snow delays but the lab people told me it would be ok. i hope they meant it.

    i heard demeirleir was testing people at redlabs in belgium....but maybe only his patients have access right now?

    i am ecstatic that xmrv is found...and that maybe i don't have to be in agony one day....and i certainly don't mean to look a gift horse in the mouth but

    i am worried about stigma now. we will be going to HIV clinics...it's just so bizarre. so surreal.

    so many emotions to deal with now. like waves crashing down on me.
  4. karenamum

    karenamum New Member

    in response to luminescentfeeling i so agree with you. I am looking to get my two daughters aged 12 and 14 years tested for xmrv. Am waiting for lab here in UK to get set up,as the 24 hour journey for blood to USA is too risky.They were diagnosed with cfs and have been ill for 4 years and fobbed off by so called professors of physcology at kings college hospital among many other doctors and told to be positive and to pace, to accept,etc!
    My youngest girl cant walk and neither of them can attend school and I,ve been going insane trying to find someone to test them for absolutely everything to find out what is really wrong with them.Their life is passing them by.
    That last visit, and after seeing probably 20 different doctors over the years to get some kind of diagnosis.
    I finally found a private clinic in Hertfordshire which actually took so much blood from them plus poo and urine that I felt sure that if there was something going on then these people were going to find it. Finally, last May(09)the diagnosis came back that both have lyme disease.I was relieved as well as shocked. How and when did they get this and why both of them?Anyway,they have been on non stop antibiotics including IV and jabs plus anti candida treatment every day ever since , and guess what? they are still ill, still not at school and still have no life,so now my life is revolving around trying to get this test done.I have to find out what the hell they,ve got inside them causing all this pain.
    [This Message was Edited on 01/10/2010]
    [This Message was Edited on 01/10/2010]
  5. ladybugmandy

    ladybugmandy Member

    a vaccine will be developed for XMRV probably in the next 2-5 years. still, i dont know how thrilled a guy would be if i tell him to get a vaccine before he kisses me!

    we have to PUSH for research into XMRV eradication as well as treatment. once a vaccine is developed, eradication studies, if there are any, will not get money. like polio...no one cares now about eliminating it from the body...they know people with it will die off and the vaccine will prevent new infections.

    i wonder if dr. sekalay will be able to eradicate HIV with the 'shock and kill' technique...it would certainly open up a huge avenue of possibilities for eradication of viruses. i think human trials for that start in a few years.

    in the meantime, with so many more women than men with CFS, the men (hetero) will sure be lucky if they want to find a partner with the illness!