The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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XMRV Positive in the U.K.

Discussion in 'XMRV Testing, Treatment and Transmission' started by joyscobby, Jan 11, 2010.

  1. clive powney

    clive powney Senior Member

    Early expected results from the UK

    I am one of the UK patients that was tested the same day as Joyscobby. I am still awaiting my results, but I have been informed (from a reliable source) that early indications are that there is a 60% +ve result from the batch that was sent from the laboratory in London mid December. If this is the case then Mr Wessley will hopefully dig himself further into his hole .
    I hope to get mine tomorrow , although I did try in vane today



  2. kwietsol


    Thank you, Clive, and best of luck. For whatever result you are hoping for.
  3. sproggle

    sproggle Jan

    Teesside, England UK
    I have never visited this blog before but was compelled to from a link to this thread in a facebook group. I have been eagerly awaiting any news regarding uk patients testing positive and am very grateful for this honest posting.

    Thank you Joy!!
  4. Knackered

    Knackered Guest

    I'm not sure why but I feel really upset.

    I hope it turns out this is the cause of our illness, it could mean we could get better, not just me but when I read stories about people being stuck in the house for 20 years it really hurts me knowing that there are people out there who think we're putting it on. I REALLY HOPE THIS IS THE CAUSE!, if it is there's already medication and research out there. We could all be better within a few years or sooner! WOW!
  5. _Kim_

    _Kim_ Guest

    Hi clive powney, Hi sproggle

    I want to welcome both of you to the forums.

    I hope you'll stick around and see how the rest of the story unfolds. We're on the edge of our seats here !!!
  6. anne_likes_red

    anne_likes_red Senior Member

    Welcome Clive! :Retro smile: (I've seen your name on another forum - WPI perhaps?)

    Best to you as you wait for your results.

    The 60+ percent indicated sounds to me like the incidence in the UK is likely to be pretty similar to the USA.
  7. Hi. I think Joyscobby has gone for a virtual Gin & Tonic and I don't blame them!
    So I'll answer partly on their behalf....

    In summary this was a 'one off' or 'two off' set up, special situation style back in December 20009 for a very limited
    blood draw - organised by a private individual, on others behalfs.

    There was a small surcharge from the Lab for preparing/handling the blood before shipping on top of the $650.
    Everyone had the 'double' test. (PCR + Culture).
    I believe the majority (if not all) patients had the blood 'drawn' in the lab.( I didn't personally and I don't know if this has affected my result negatively).
    Lab prepared all patients samples, packed samples and sent off to airport in two batches.
    Blood got to USA 24hrs shipped delivery. (This is the max time apparently allowed by VIPdx).
    We needed a refering doctor on the blood form and weren't sent the results directly, but to a doctor first. They then send the results on.
    It was all very professional and patient confidentiality was kept at all times. E.g. you cannot phone up and get results, or even 'track' the parcel sent to USA.

    Whole set up was very kindly organised by a lady on this forum who is also a severe ME sufferer, so a single doctor didn't (to my knowledge) mastermind this little coup
    in the UK. All in all, it was a good samaritan exercise to help patients, by other patients who found a way in to the 'system'.

    This amused some of us, who had already contacted the USA and been told by phone there was no way that any blood could be sent from UK.
    To be fair, this person was only a spokesperson/secretary and not a doctor/scientist. Just goes to show what can be done with a bit of ingenuinity/ determination/contacts.

    Further good news is The Breakspear Hospital (day clinic) in the UK are taking blood to be frozen and then sent off, and I hear, soon, RedLabs in Belgium will offer the XMRV test directly
    without any need to send off to the USA for European patients. (RedLabs pioneered the LMW RN-aseL test back in 1999).
  8. flybro

    flybro Senior Member

    I just posted it on WPI discussion but thought I re-post here

    Mixed emotions even when we have'nt had the tests done.

    I heard the news and felt lifted and hopeful, and even hoped that I get the tests and test positive.

    Then I feel dreadfull guilt and pathetic for hoping to test positive for such an ugly retrovirus.

    I think about my kids, and grandkids, and feel didsgusted at myself, for wishng myself and perhaps them to life of drug therapy.

    Then I go back to, well its better than this slow inexplicable drip by drip death.

    I can't work out whats the worse option, being tested positive for XMRV, or being stuck in the CFS dustbin diagnosis bin, with a whole bunch of sick people begging for help.

    I suppose at least if I know whats wrong with me ( even if it is an ugly retrovirus), I can perhaps go someway to protect my children from the diabolical treatment we inevitablly suffer at the hands of the MEDICAL ESTABLISHMENT.

    Incidentley, like Joy my 1st daughter was OK, although has had CFS type symptoms, especially during pregnancy and after her daughter was born.

    My youngest daughter is dyspraxic,

    I had blood plasma after a car crash, but that was after I had my girls,

    After the crash I went on to develope awful gynie problems, hysterectomy @ 27/28.

    Joy you have given a global comunity on many different sites across the internet bags of hope.

    You may well have saved lives tonite.

  9. joyscobby

    joyscobby Senior Member

    dysa.... thanks no GnT virtual champagne (it would be my real tiple if I could)

    Bit wiped and brain gone so know loads of questions I will try and answer them asp. I will go over take note and do it in a oner, some might be answered before I can get to it sorry folks zzzz time for me it is getting close to midnight and one hell of a day, week, month, etc.

    thanks for all the lovely words and support

    keep on posting I will read them as will others

    Use Key word if possible to help searches on this pick this up
  10. alice1

    alice1 Senior Member

    Hey Congratulations......:victory:
  11. sleepwalking


    Wild Wild West, US
    I think you are so brave and strong. I do hope they come up with a reliable treatment shortly.

    I took the test today and blood is being fed exed to VIP labs tonight thanks to the help of an infectious disease doctor I saw today.
  12. kit


    :thumbsup:: for sharing this news!
  13. parvofighter

    parvofighter Senior Member

    XMRV present in UK! Proof by same methods as Science researchers.

    XMRV has been found in the UK!!! And most importantly, established by the same robust methods as Science researchers.

    Joyscobby and Clive,

    Thank you both for your courage, resilience, and determination in both ensuring that you got a credible XMRV test, and then in sharing it with us. You and your intrepid team of patients stand as the pioneers in the UK for breaking the iron curtain of denial on ME/CFS and XMRV. I don't know who organized this, but kudos to your patient organizer for following that now-famous credo: "Yes, we CAN".


    And yes, I completely share your mixed bag of emotions, and extend a pond and a paw across the pond.

    1) Yes, a tragic elation that indeed, XMRV IS IN THE UK. And that this was established by the same science used in the groundbreaking Science journal - not through some backwater shenanigans in lab and patient cohort selection, as per the Imperial College "Failure to Detect" research. So XMRV may be alive and well in the UK, but the XMRV patients in the UK certainly aren't. What an awful price you are paying for the relief of knowing that you have a retrovirus. To those of you who can't understand why we would be relieved, or even jubilant that patients are testing positive for a retrovirus, consider if you had been profoundly ill for decades, and derided - rather than cared for - by doctors, family, friends. Now you can begin the road to healing in earnest. Translational researchers, pharmas, science-based alternative practitioners: start your engines.

    2) Grief that UK patients with XMRV have been derided, ridiculed, abused, and dismissed by medical quacks with a stranglehold on health policy in the UK. What we really need now is the kind of longitudinal samples that Peterson had in the US - so that we can get some sense of indeed how long XMRV may have been in the UK. Your blood bank and legal community may be your best recourse for this - unless some of your patients with honest-to-god Canadian/Fukuda criteria have banked samples somewhere. Can any of you XMRV-positive patients in the UK access banked samples of your own blood from the past? Other thoughts anyone? The sooner we can get robust XMRV evaluation on longitudinal samples in the UK, the better, no?

    3) Determination to help patients around the world get proper medical diagnoses and treatment for the various subtypes of ME/CFS. This is a scandal of epic proportions - that patients with a retrovirus - known to perpetuate the viral manifestations so well known with ME/CFS (much less cancers) - have been shuffled off to quacks, with a sadistic approach to "treatment" through CBT/GET, and a fiendish determination to prevent ME/CFS patients from accessing biologically-based medical care. To the politicians and medical policy-makers in the audience. It's time to step up the the plate, learn to differentiate garbage from Science, and accelerate patient access to diagnostics, clinical trials, and XMRV safe, effective treatments as they become available.

    It's patients like you who make change, and I extend my deepest appreciation for your fortitude and bravery for breaking the inevitable news that yes, indeed, XMRV IS PRESENT IN THE UK!

    So the sentiments right back at you:
    And :hug::Sign Good Job::hug::Sign Good one::hug::Sign Good Job: across the miles.
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    Well, I am looking forward to the test (when it is approved by insurance). I am taking supplements and lifestyle with the assumption that I have XMRV. No medicine approved for treatment, so even if I tested positive, I would do nothing different.

    I hope I am positive. It would mean the confusion is over. No more searching.

    There are so many abnormalities in this illness that trying to treat them all: endocrine, neurological, immune system, etc. is expensive and a heavy burden to keep up with it all. So if I have XMRV, then I will know what to focus on, what to put priority on. And since I assume I have it, then I am already benefiting from the discovery.

    But, I am concerned that only 60% of the folks in your group showed positive. Again, maybe it is the infancy of the assay methods. Or maybe it is that XMRV is hard to find, even in people who have it. I know it can go dormant. But I wonder if there is a time when XMRV is undetectable, even by the many different tests WPI is using. Remember, they strictly defined their cohort. If they broadened it to include many more who have CFS, then they might not have found XMRV. But it may not be because these people don't have XMRV, it may be that the virus is undetectable in some stages.

  15. sleepwalking


    Wild Wild West, US
    Bravo ParvoFighter! I hope that will be picked up in a google search!
  16. Countrygirl

    Countrygirl Senior Member

    M.E./C.F.S. in U.K. positive for XMRV

    Thank you for your excellent post, parvo. :victory: :tear:
  17. froufox

    froufox Senior Member

    Good luck Joy at least this gives you some answers now as to why you have been ill for so long and gives hope for a treatment in the future, I wish you all the best whatever happens.

    I just wanted to share my results too - I tested negative to both pcr & culture. I'm not sure what to think and have mixed feelings about it like others but I am surprised as I thought it was more likely that I would test positive... I am a pretty typical MEer with the usual neuro/endocrine/immune dysfunction and have been ill for many years following an initial viral onset. Though obviously as the testing is still in its early stages nothing is conclusive at this stage. Anyway hopefully as the testing gets more accurate and an antibody test is developed we'll have more answers before too long.

    All the best to everyone.
  18. Sparklehorse


    Hi froufox, thanks for being brave enough to let us know your own results. Can I ask if you were one of the recent UK residents who sent their blood off for testing or are you in America? Where were your tests done? Personally I don't think that the fact you got a negative result doesn't mean that you don't have ME or aren't a typical patient. This whole XMRV issue is very perplexing. There's a long way to go yet before any hard answers can be arrived at. Good luck to you, whatever.
  19. froufox

    froufox Senior Member

    Hi Sparklehorse thanx for your post. Yes I was one of the people who had the test done in the UK in December. The blood was collected at Biolab and the test done at VIPdx. I agree it is very perplexing and still very early days so we cant really conclude much at this point. I guess it is possible that some of us just have different issues with the same ME manifestation but I'm defintely not ruling out having XMRV.

  20. clive powney

    clive powney Senior Member

    I am part of the UK initial group and have tested negative for both tests. Mixed emotions again as others have felt here too.
    On the note of the initial positive results only being 67% at WPI and then further analysis gave a 98% result, has anyone got any views on this as both the UK and USA results are seeming to pan out at around the 60%+ mark. Is there a further antibody test that picked up the additional 30%?

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