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XMRV Positive in the U.K.

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

  1. froufox

    froufox Senior Member

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    Hi Clive, yes it looks very likely that further antibody testing will give us more answers and this is definitely not the last word. I dont think there is an antibody test available that we can take at the moment tho. Presumably they are working on it but I dont know, maybe others here have more of an idea? Anyway hang in there I can definitely relate to how you feel!
  2. Sparklehorse

    Sparklehorse *****

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    Thankyou to froufox and Clive for your answers and sharing your feelings. Like you said this isn't then end of matters I'm sure. Good luck.
  3. XMRV IgG Antibody test is out in the next 4-6 months I think from VIPdx.

    As for the 67% of the WPI study in the initial first study having XMRV, that is very high indeed for patients who tell a doctor they are exhausted and have neuro symptoms with no other evidence. (If, for example one took 100 people in a room who 'think' or are 'told' (guessed at) they have MS (with no other test), and 67 of them tested positive on a blood test for MS - that would be a remarkable achievement). Especially, as once the test is refined and completed, the acccuracy will get higher. We are lead to believe the Antibody test for people with Neuro Immune disease leading to classic symptoms of ME CFIDS, runs up to the 80% rate when tested for XMRV.

    The average joe public with Chronic Fatigue (told they have CFS) would never score this high for XMRV (67%) on PCR/Culture . Conversely the patients at the WPI no doubt have all sorts of horrible symptoms of organic disease - which XMRV would cause and which the Canadian Criteria for CFS allows for. The Wessely UK XMRV study, discounted anyone with organic disease, and used an invalid detection method. Hence they got 0%, which would be statistically impossible.

    Seriously diseased people (rightly or wrongly) have been given the label 'CFS' - the same as people who are not organically ill, but psychiatrically ill, or just ill for other reasons. One can argue, (ironically) that people who test XMRV+ don't have CFS, but XMRV and have been misdiagnosed. I would agree.

    1) So we have people saying Oi, hands of CFS you are mentally ill and I am not (fair enough).
    2) So we have people saying Oi, hands of CFS you are not mentally ill and I am (fair enough as CFS Criteria allow for the mentally ill).
    3) And we have people saying Oi, I don't have CFS, I have neuro immune disease but got the wrong label. (fair enough).

    Allowing for this very real situation, you can see that no way in God's earth would 67% of the above test positive for XMRV.
    You'd need to select group 3 at least.

    67% tested positive for XMRV and it's so high because the WPI made sure, they were very sure these people had Neuro Immune disease beforehand, by using the Canadian Criteria for CFS, not some Criteria about being tired and having a headache and depression. (Which is now the average person's experience of 'CFS' thanks to very lax and poorly defined Criteria in use today).

    In the UK, especially, there are people who are stroking their faces, and saying 'No' in their heads - and claiming to have CFS. If CFS is unexplained tiredness caused by neurosis then they do have CFS. If CFS is a neuro immune disease, then they do not. If CFS is unexplained organic disease, then they do not.

    Would people who stroke their face or say 'no' to vanish symptoms away have a cancer causing immune supressing retrovirus causing significant inflammation and cardio respriatory symptoms etc etc? Nope. And if these people get tested for XMRV they won't have it. Many of these people are on this board if you read the sections of the forum. They are told they fit the criteria, so they have the same label as someone who has a tube up their genitals and cannot feel to pee due to nerve damage. Ludicrous, but that's the state of play.

    People with Chronic viral infections, deficiencies, sleep disorders, won't have XMRV either, and they'll also test negative - despite being told they have CFS. Only a small percentage of people on this forum will be XMRV+ by the very logic of having an 'unexplained' illness with no specific single Criteria, and no other way to test for it. CFS is an idiotic word and should never have been used. It's a free for all, anyone can join the party - unless using Canadian Criteria.

    Now we have (literally) countless reasons to have 'CFS' and people testing negative for XMRV which they needed to have to get help, and recognition from the medical profession.
    It's a huge mess, and entirely caused by Government health agencies being infested with psychological theories. Theories that are alive and well today.

    It causes friction to say the very least. One could argue quite rightly, this board is not about XMRV, but CFS and ME.

    Certainly if I was XMRV+ I'd be an extreme minority on here, and that's no bad thing as until someone 'officially' changes what CFS is, then XMRV is not CFS or ME.
    The good news is, when one does test positive, all the in-fighting and arguments end. People can allow people to have theories on mental processes and CBT, and whatever, as they are no longer in the group of people with the label and their life is no longer threatened by 'CFS' theories.

    I imagine the feeling of being pulled out of the group of 'CFS' is like coming to a long exhausting fight, for everyone.
  4. Knackered

    Knackered Guest

    I'm wondering now whether I should pay to get tested or whether I should wait until a better, more standardised test comes along.

    I'm sure now that If XMRV is the cause I'd be found to be positive, I have all the classic symptoms and the viral onset. It's al so exciting, this is all I've been able to think about since I heard of it yesterday. I never thought I'd be excited to find out the possibility of having a retrovirus.

    One thing that worried me though, if XMRV is the cause, can we have kids? How about sex?
  5. Knackered

    Knackered Guest

    I don't mean to offend anyone here so If you find this offensive I apologise.

    But anyway, I think another big problem is the UK benefits system, I'm sure there are some people in the UK who claim to have CFS who have nothing but a lack of desire to work.
    When I first caught a virus back in 2004 I was studying whilst working for an engineering company and earning good money for it, I had a girlfriend and a plan for my life. When I became ill I was treated by doctors and other people around me as though I was malingering. I'm sure no one feels like that now about me, but it's indicative. My mum told me there are a couple near where she lives who have CFS and she says they're out every day in their car and going on holidays. I don;t think they work so they must be claiming benefits. I'm not sure how they afford it either, I get 90 a week to live on, it's nothing.

    I can't wait to be able to get back to working. I'm so excited about these findings I can hardly control myself.
  6. Marco

    Marco Old blackguard

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    Personally I'm not offended by your comments but the proportion of benefit 'cheats' is often exagerated by those who would like to force everyone back to work or off benefits regardless of how well or ill they are. In fact those with ME/CFS tend to have a very hard time qualifying for and retaining benefits in the UK due to the ridiculously simplistic testing regime (can you bend down to tie your laces during this 30 minute interview). As for the second hand anecdote, you make a lot of assumptions. Any time I'm seen outside I probably appear relatively well but of course I wouldn't be out and about on the days I didn't - plus its hard to spot muscle pain, physical and mental fatigue, cognitive problems, IBS etc from a distance.
  7. Knackered

    Knackered Guest

    Yeah, I don't mean to make assumptions, but in the past I've had experience of people who say they have the illness I have and they clearly don't. It's upsetting and frustrating, I believe they've held us back, not just them but the doctors who diagnosed them. The points DysautonomiaXMRV made are correct and I was pleased he made them:

    What's had me thinking lately is, if it is XMRV and we all get tested and treated, what happens to those people who don't have XMRV? Will they actually be now comfirmed to have a mental illness? What if there's a biological cause for some of those people?

    My guess is they'll be one of two outcomes when the biological cause of CFS is found.
    1) People with XMRV will be treated and we'll either have 'real' CFS or it will be renamed, people who aren't shown to have a biological illness will go on as normal, not working and living as they did before.
    2) People with XMRV will be treated and we'll either have 'real' CFS or it will be renamed, people who aren't shown to have a biological illness will be made to go through psychological testing with CBT/GET.
  8. Martlet

    Martlet Senior Member

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    Joy - I am absolutely delighted for you (never thought I would say that to someone with a retrovirus) and for all the patients in the UK. I was so excited I shot off an email to one of my girls who is a scientist before writing my congratulatory post.:D
  9. bullybeef

    bullybeef Senior Member

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    I am exactly the same. I left worked in early 2006, tried again in Sept 2007, only to succumb to my condition after a few months. When I originally left work I was moving up the ladder, earning quite a decent salary for the job I did, and looking at management positions. That all fell apart and I was forced into voluntary bankruptcy. Everything I have done to improve my condition and health hasn't been taken lightly and, like others, was forced upon me. It even took me some time to just get used to taking my medication.

    When I am confident and healthy enough to commit to a job, I will look with vigour. I would probably contact my old employers, who did everything they could to help me.

    None of us choose this disease, it chooses us. Just like every other person who receives bad news from their doctor. We dont want to burden people with our suffering, we want our lives back, and the way we are left to fend for ourselves by the powers that be because they would be out of pocket is nothing short as a worldwide scandal.

    XMRV may prove to be an epidemic, but nothing worse than the epidemic that has entrenched our lives by the medical, insurance and welfare professions that should be there to help us.

    I understand why the severe sufferers choose to end everything, because thats how were made to feel: Alone, malingerers and a burden to society.
  10. joyscobby

    joyscobby Senior Member

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    I am all a muddle just got the hard copy of my results. Yes in black and white Positive Culture - Negative PCR. I have XMRV in my DNA. Woopee how warped has our treatment been.

    For thoose who tested negative do not loose heart I think thing are about to change, test will get better, more research will come out and so much needs to be done but the answers are there in good hard science. XMRV is not only in the US it is in Scotland and by that the UK and Europe.

    I need to rest up now so may not say much for a little but to our more capable comrades do as much with this as you can. I put it out ther in full knowledge of the implications for myself. I have cleared it with my family and friends and they are behind me 100%.
  11. bullybeef

    bullybeef Senior Member

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    How far do you want this to go JS?
  12. joyscobby

    joyscobby Senior Member

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    It is out there now so anyplace it can.
  13. sproggle

    sproggle Jan

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    Have just been reading about XMRV testing on the VIP Dx site the following points helped me reach a decision about getting tested:


    Q: Does a negative result definitively mean that I am not infected?

    A: Although we strive to offer the most sensitive test available, XMRV is typically present at a very low-copy number and may be below the limit of detection at the time your sample was tested. Re-testing at a later date is a decision for you and your physician or health care professional to discuss and determine the best course of action.

    Q: Is it possible to have a positive result at one point in and a negative result at a later time?

    A: Although retroviruses are integrated into the cellular DNA of white blood cells and are considered life-long infections it is possible that your immune system may hold the virus to a level below the limit of detection from time to time. Presently, the life cycle of the virus is unknown so if you receive a positive result at any time it is unnecessary to do retesting until more is known about XMRV.

    Q: Are there any treatment options for XMRV infection?

    A: Although XMRV is a retrovirus it is substantially different from other known human retroviruses. There is much still to learn about this virus and its effect upon the human body. VIP Dx does not recommend anti retroviral therapy based upon these tests. We encourage you to consult with your physician or health care professional regarding treatment options which may help your body deal with infection.

    Q: How is XMRV transmitted?

    A: Although little is known about transmissibility it must be assumed the virus is transmitted though body fluids, like other retroviruses, until further information is available.

    Q: Is a serological test available at this time?

    A: A serological test is currently in development. Once our serological test is available we anticipate an increase in sensitivity, a further decrease in false negative results and possibly a decrease in our costs to run the test, which we will pass on to our customers. We will provide updates as appropriate.

    Think I will wait till the serological test is available - i live in the north east so a trip to London to be tested would be rather difficult and I only wanna do it once!! ;)
    Plus more acurate and cheaper sounds like a bargain! Hope it's available soon.

    http://www.vipdx.com/
  14. JAS

    JAS

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    New here and sorry if this has already been mentioned but I think that the Western Blot Test will also include testing for antibodies, it is not out yet but I did read somewhere (not sure where, have read so much lately!) that it may be out in February. I was due go to Biolab yesterday but decided to wait until the Western Blot Test comes out which should replicate the 97%+ test established by the WPI. The testing is very early days and it still experimental so please don't be too disheartened by a negative (I know that you know what I mean!), there is a long way to go yet.
  15. Knackered

    Knackered Guest

    Me too, good point, I have some small savings left over from when I worked and I haven't touched it. When the test gets better I will, thanks for your reply. :thumbsup:
  16. Sparklehorse

    Sparklehorse *****

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    It says here that "XMRV is typically present at a very low-copy number......." I worry that ME/CFS deniers might be able to say that as XMRV is present (if at all) in such low numbers then it's affects on the body are negligible and will dismiss it on this basis. So my question to the scientifically able on here, i.e not me, is does a virus have to be present in large numbers to cause illness or can a low amount be enough to cause something like our illness? Hope this makes sense. Sorry if I'm missing something obvious.

    Thanks
  17. bullybeef

    bullybeef Senior Member

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    I am no way medically minded, but my interpretation is:

    Because retroviruses copy and imitate your own DNA, they hide, so only show up by specific means, and in low numbers. It maybe isn’t a case that their numbers mean how much you are infected. It just means they very good at disguising themselves.

    I am sure someone will be able to explain this more technically then me.
  18. Sparklehorse

    Sparklehorse *****

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    Thanks, that sounds like it could be right. I'm learning this as I go along! If nothing else all of this stuff is fascinating and very interesting. It also gives me some understanding why XMRV might be so hard to pick up in blood tests. I'm looking forward to seeing how all of this develops.
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Also, note that Peterson said CFS is likely caused by not just XMRV, but other factors. Some possibility are defects in the genes, pre-existing immune system problems, other viruses, or dysautonomia. Already, there has to be something to "turn on" the virus, said Mikovitz: high cortisol (bringing in the stress factor), androgens or another virus or vaccine.

    Not everyone who has HTLV gets human leukemia, but that does not lessen the respect that HTLV causes it.

    I think another factor may be that XMRV may cause an immune system problem that basically gets stuck, a downward spiral from which the person just can't recover. So it may be active, causing all types of problems. Then it goes dormant, or immune system gets a handle on it. And the amount of virus becomes very small. It is no longer actively infecting new cells. But, the immune system problems it originally caused may still remain. And then there is the factor of it possibly hiding in the neurological system, which means it would be doing damage there, but be very hard to detect in the immune system.

    Isn't this exciting. If I were a scientist, I would be all over this. I love to discover.

    Tina
  20. Knackered

    Knackered Guest

    What does this mean in regard to treatment possibilities?

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