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.
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XMRV in the Blood Supply? - WPI to begin testing

Discussion in 'XMRV Research and Replication Studies' started by _Kim_, Nov 15, 2009.

  1. _Kim_

    _Kim_ Guest

    November 15, 2009

    Hope for Chronic Fatigue sufferers; concern about the blood supply by Jack Johnson at Las Vegas City Life Blogs

  2. mikipe2


    Very cool, thanks for the post.

    This is the first solid next step I've heard about since the Science article. While it's not exactly gonna help with treatment for us, it's good to hear that this finding is being taken seriously.
  3. MEKoan

    MEKoan Senior Member

    I think this is true, Levi.

    I think many people are thinking that if they got "Chronic Fatigue Syndrome", they would pull up their socks and deal with being "tired". Hell, they're already chronically fatigued; what would change? How bad could it be, after all -- it's called "fatigue". They would power through, or drink extra coffee or get over it.

    I think it seems like a pretty manageable consequence. The semantic war against the reality of this condition has been a great success.
  4. Andrew

    Andrew Senior Member

    Los Angeles, USA
    FWIW, the book Osler's Web mentions that one of Daniel Peterson's nurses accidentally stuck herself with the needle after drawing blood from someone with CFS. The nurse soon came down with CFS symptoms.
  5. hvs

    hvs Senior Member

    Wow, this is a big development.

    Interesting that NIH, CDC, and FDA seem to be cooperating with the WPI on this.

    By the way, slightly OT, I just checked the HIV prevalence rate in the USA and it appears to be .6% of adults. If the NIH/Cleveland Clinic/WPI rate of XMRV infection of 4% holds out that means this thing is really widespread, relatively. And the rate of XAND is going to be very high, relatively.
  6. condra



    Things are getting interesting.
  7. greybeh

    greybeh Guest

    I would like to ask if anyone knows how they know it's not airborne?

    "Osler's Web" ALSO talked about speculation that some people got ill due to recycled air systems (the teachers and people connected with airlines). I have not heard anything, so far, to specifically de-bunk that speculation!

    I hope someone who knows a lot more than I do can help me put to rest these misgivings about what I read in Hillary Johnson's book.
  8. George

    George Guest

    Hillary Johnson has done a great job in speaking out for the CFS/ME community and keeping the pressure on the powers that be to stop screwing around and take CFS/ME seriously. Part of how she kept that pressure up was by reporting some of the theories that were going around at the time. Some of the theories she quotes were meant to scare folks into taking action.

    Now we are dealing with science. Retroviruses are normally spread via blood in the animal world. So far the three Retroviruses that have been identified (HIV/HTLV/XMRV) seem to be following the same pattern. They are spread by blood and sexual secretions.

    Unlike viruses, like the rhino virus which produces the common cold, and can be spread via air through nasal secretions (sneezing), saliva (sharing drinks, EBV), sweat from hands, etc.

    This retrovirus has likely been spreading from person to person, from family to family via blood and sex since at least the 1930's. The first notes about go back to 1934. The number of people exhibiting CFS/ME like illness has increased from a few hundred in the 30's and 40's to a few thousand in the 50's and 60's, to around a million at the beginning of the 80's to an estimated 17 million currently.

    If it were airborn it would act more like the H1N1 spreading world wide and infection over 20 million people in about 7 months. So air born as been disproved! (grins)
  9. Martlet

    Martlet Senior Member

    Near St Louis, MO
    George, I found your post interesting but still have serious doubts about sexual and/or transfusions as the only means of transmission, precisely because of some of the people I know with it, who have no transfusion history and who were virgins at marriage, remaining faithful over the years.
  10. George

    George Guest

    Hi ya;
    My mother had it. She died of lymphoma at the age of 47.

    I was perfectly healthy and kicking ass in the world right up to the age of 40 then BAM! A bad case of Mono/EBV and well here I am.

    I think we have a hard time thinking that we may carry this virus with us without it being active. And I don't like thinking about the people that I might have given it to.

    Dr. Peterson put forward the following theory.

    First- you get XMRV (they know for a fact via blood, in the womb and sexual secretion) other ways are being looked at.
    Second -you have a event (such as high stress, accident, or illness)
    Third- that event provides the opportunity for XMRV to become active.
    (high cortisol makes it wake up and do the happy dance, and White blood cells, T,B and NK give it a home in which to replicate)
    Fourth -The replication rate goes up because more immune T,B, and NK cells keep trying to fight the virus.
    Fifth - you now have XAND which can show up as Fibromyalgia, CFS/ME, Autism, atypical MS and probably a few more depending on your genetics.

    Now you are absolutely right that we only have about 1/3 of the above validated by science right now. There could be some minor or major changes as the studies progress. Right now they are doing a study on women and possible tumorgenesis with regards to XMRV my guess is they will check to see if it is active in vaginal secretions at this point.

    But casual contact would mean a much faster rate of epidemic and a much much larger number. So far the numbers don't hold out for that.

    But hey who knows you could be right.
  11. Katie

    Katie Guest

    Mother to child or father to child transmission is also a likely mode of transmission whether the retrovirus is causing symptoms or not. Dr Coffin also posited the possibility of XMRV piggybacking on more common viruses such as EBV.

    My personal theory of my own situation is that I was born with XMRV. When I reached the puberty and my body was under stress I was given a vaccination and shortly thereafter caught glandular fever (or glandular fever like virus, they were never sure) which I believe replicated my XMRV to the point where it overcame my immune system. I also have a history of bad reactions to vaccines which may have displayed XMRV flare ups which my immune system overcame. This is only based on what I've read so far and is not in the slightest an informed scientific opinion. I do feel it makes sense though.
  12. hvs

    hvs Senior Member

    One adjustment might be a model in which XMRV loves to stow away in herpes-family viruses. Both Coffin and Peterson seem open to this and it would explain why people like Peterson and Lerner have successfully treated people by going after them.
  13. I think I was born with it too.

    My mother had a blood transfusion before I was born, and they told her in the hospital she had something 'interesting' in her blood (antibodies) and could they take more blood. (As she was very sick, she declined the offer and thus never knew what this thing was). All these years later me and my mother both have ME- with me much more affected - possibly as she had a fully developed immune system before meeting XMRV - and I did not.

    Secondly I am interested in the vaccine link. BCG vaccination age 12/13 is when tonnes of new teens seem to develop ME, or soon after.
    We are also hearing of girls developing ME now after the new HPV vaccine. (All involve challenging the immune system).
    If it's defective - then the immune response will be deranged and possibly, neuro/immune disease ensues.

    Lastly (correct me if I'm wrong) in puberty in females - oestrogen hormone increases. Weren't we told XMRV has something to do with Oestrogen?

    If so - this explains the 'wave' of female teens who develop ME. It doesn't explain the males, but I'm guessing it doesn't have to. Interesting either way.
  14. Martlet

    Martlet Senior Member

    Near St Louis, MO
    The piggy-back theory also interests me personally. So many people have some form of herpes, especially the form that causes cold sores, and I suspect many of us have kissed far more people than we have gone to bed with. But could it also piggy-back on the virus that made so many of us think we had the worst flu of our lives? Or was that just a trigger for an existing infection?

    So many questions, so few answers - yet.
  15. hvs

    hvs Senior Member

    Or did we lucky few have xmrv integrated into EBV, etc., which adults have in them at a rate of 90%+. Then the stressor/infection happens; then xmrv gets into immune cells, etc.

    You're right that answers are imminent. There is about to be hundreds of millions spent on this retrovirus around the world.
  16. Martlet

    Martlet Senior Member

    Near St Louis, MO
    I wish I were a more patient person. :(
  17. bakercape

    bakercape Senior Member

    Cape Cod. Mass

    I'm having issues with the transmition issue with this virus. Personally I was 17 years old. My Brother was 12 and my Mom was 48. We all got CFS suddenly in a one month period. I tested positive on a mono spot test and also had chicken pox two weeks latter. I am also adopted so my brother and I could not have both gotten XMRV from my parents. So unless it is transmitted via saliva or piggybacks on EBV or another virus I don't see how we could have all gotten XMRV. Any Ideas? These facts make me less hopeful a retrovirus like XMRV is the answer for my family.
    Although many people in thaoe came down with it at once and they weren't all sharing boy fluids or needles so maybe XMRV can be transmitted in a different way than HIV. Either way I'm afraid to be tested. If positive I have a retrovirus with no treatment. If I'm negative I have no idea still why I am sick.
  18. bertiedog

    bertiedog Senior Member

    South East England, UK
    Blood Transfusion

    I wanted to say that I had a blood transfusion of 2 pints when I lost 4 pints of blood immediately after childbirth in 1975. I was never quite the same after this and acquired a very nasty case of mumps 10 weeks later even though I had it badly as a child. My doctor hadn't heard of this happening before.

    I developed ME/CFS in 1979 following a 2 week flu and never fully recovered with the main symptoms of vertigo and almost daily migraines. It has been suggested to me by me CFS doctor that I might have had a mild case of Sheehans Syndome which stops the HPA axis working properly but now this has come out about XMRV I wonder if I was also infected. I was definitely already mercury poisoned because in 1973 had a stillborn baby linked to Spina Bifida.

    Look forward to getting tested but as I live in the UK don't know when that will be. However I now feel quite well having dealt with high DNA/RNA probably viral on my mitochondria and have cleared a lot of the heavy metals I was poisoned with through supporting methylation. I need only a tiny amount of thyroid medication but still need a good dose of daily steroids but hoping that I might be able to cut these down too.

  19. _Kim_

    _Kim_ Guest

    Hi bakercape,

    WPI might be interested in your family. I understand your fear of being tested, but would you consider filling out the questionnaire? There is a section called "Other complicating factors". Maybe you could copy what you wrote above in that section.

  20. Vaccines

    Question: Where are all the people outside of the developed Western world with ME CFS and neuro/immune disease in general? The CDC tell us ME CFS affects people of all ages,races, etc. Fair enough, it does. However ALL, and I mean ALL the people so far I have seen in interviews have pale skin.

    That could be that it's propaganda by the government to maintain the white myth of middle class fortunate backgrounds - or it could likely be genetic factors. (Highest percentage of folk with Sickle Cell Anaemia are African and Afro-Caribbean Carribean).

    We all share the same history (regardless of race/colour) as being from developed countries with vaccinatin programes. We have all been injected as children in North America/Europe/Asia etc. I doubt many people on this forum live in a shanty town, or the Himalayas where one would have no hospital/clinic at all. (This makes them immune to ME CFS in my belief, because they escape the transmission, the vector that triggers it).

    Are there swathes of Taliban in Afghanistan with Parkinson's, ME CFS, Autism, Gulf War Syndrome? I think not - they never had a sniff of vaccines we had back in the 60, 70, 80, 90's. Even if they could have had, - they would not have been from the same manufacturer or vastly powerful drugs companies - that just happen to employ Simon Wessely and Bill Reeves.

    It could be a mixture of vaccines (or vaccine contamination) and genetic factors that causes this illness. (After all, the highest incidence of MS - Multiple Sclerosis patients in the world, are all pale skinned and with red hair - from Scotland.

    Scottish people would have all been vaccinated as a child, unlike Africans walking 5 miles for water every morning and living off a 'goat' for 1 month.
    Are they vaccinated, if so - with the same companies/batches? I think not.

    When Dr John Coffin the XMRV virologist stated openly scientists have been using XRMV like viruses in laboratories for years (man made) - it doesn't take a genius to work out these can contaminate vaccines by accident, by design (animal tissue is used in vaccines), or on purpose as a biological weapon.

    Listening to his talk at the CFSAC, he was alluding to (but not to the cause), it's not impossible hybrid 'wild mice' are running around with XMRV that infect humans/animals. That's not my theory, he said it himself as a possibility.

    It then takes 1 second to ask the question, if infective mice only exist in labs (as he stated as non-lab mic are immune) - it is possible wild mice with this synthetically engineered infection really are running around spreading it to man - then who put the mice in the fields. Rogue scientist/terrorist/government experiment? Simon Wessely is a military Psychiatrist. Why is a military psychiatrist running a programme on CFS ME - by saying it doesn't exist, especially when CFS ME has never been classified as a mental health disorder?

    Do psychiatrists run programmes and prevent research on Lupus, MS?
    No. Yet strangely, for CFS ME - they do.

    Who knows. The vaccine links seems a lot more plausible than mice in fields, and explainable why teenagers get sick soon after having vaccinations at school and are told they have ME CFS. E.g. Rubella, BCG, HPV. And also students/adults who have 'jabs' to go travelling over sees also can come down with ME CFS. I got sick 3 years after, but for years before I got CFS ME - I got very sick every time I had a viral infection and spent up to a month off school. Every time.

    The year before I got ME CFS (age fifteen), I had 5 URTI's requiring anti-biotics. That's not normal, there's a reason. Immune suppression. XMRV?
    Who knows.

    Vaccines are implicated in the terrible tragedy of Lynn Gilderdale.
    An extract from a news article on her reads...........

    'Then in November 1991, when she was 14, she had a TB vaccination and immediately felt unwell. Lynn struggled in to school the next day but was sent home and never returned.'

    You can read the story here that was written before her passing.

    Vaccines were also implicated in the heart breaking tale of Sophia Mirza.

    'At 19 she went travelling and working in Africa, before which she had to have multiple vaccinations. Whilst in Africa she had two doses of malaria.'

    Read more on her story here: Sophia Wilson 01.htm

    I always maintained to my mother, the day we find out WHY we are ill - it will be a terrible moment of horror as we realise the seriousness of it - yet at the same time, it will be very simplistic and basic.

    No 'mystery'..... The 'mystery' was disinformation created by the government by using such names as 'controversial'. Being immune suppressed and terribly sick is not 'controversial'.

    It's reality.

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