Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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The UK NHS: XMRV testing and politics.

Discussion in 'XMRV Testing, Treatment and Transmission' started by bullybeef, Dec 17, 2009.

  1. bullybeef

    bullybeef Senior Member

    North West, England, UK
    Hi all,

    Being new to the forum and from the UK, the US seems a great distance away in regards to being tested for XMRV. So the majority here in the UK have to be very patient due to having a free National Health Service. At $650 (300) for the test, it will cost the government a fortune by the time they have processed all the suspected carriers, ME/CFS or otherwise.

    Although I know of a small number of people over here who have sent their blood to the US for testing, me and many others have to wait for the UK to accept XMRV is here and infecting us too. And because of this, news of XMRV and how potentially serious it could become is very sparse in the UK.

    All replication studies that have been announced in the UK are also low key and whether XMRV is infact here, nothing wont be known until spring at the very earliest. The other issue here is the definition of ME/CFS may cause problems.

    Being quite a suspicious person, it wouldnt surprise me that some researchers maybe as eager to discredit XMRV and its relationship with ME/CFS, just as much as some may want to prove it. But like for like definitions of ME/CFS are not going to match. The UK ME/CFS medical community seems to be very much run by the psychiatrists and their reputations and livelihoods could rest upon the prevalence of XMRV in ME/CFS. So it is going to be very political. And just to add more spice, we will have a general election next year, and the UK could have a new Prime Minister. I doubt any politician would enjoy telling the people of the UK a new human retrovirus is amongst us.

    So, although we do have an option to pay for tests now, many of us are awaiting the replication studies. Personally, if I could afford to be tested and be in a position to travel to London, I would do it. But our doctors would be at loss of how to treat us should we prove positive. Actually, that isnt that different to how things are now.

    Personally, I would prefer to be tested negative, simply for my families sake. Although my wife would prefer the alternative result (dont worry, I dont have life insurance, so she cant be after my money). Someone said on a forum recently, I wish I could go to sleep and wake up after XMRV has been proven the cause or effect of ME/CFS.

    Anyone know any good lullabies?
  2. Quilp

    Quilp Senior Member

    Hello bullybeef

    Many of us here in the UK feel much the same. The psychiatrists stand to lose a great deal if XMRV turns out to be the smoking gun, and i'm not just talking about their professional reputations.
    Our friends over the pond seem like our only hope.

    kind regards, Mark

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