The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Further XMRV test results from the UK

Discussion in 'XMRV Testing, Treatment and Transmission' started by xanadu, Jan 19, 2010.

  1. xanadu


    Posted on WPI Facebook earlier today.

    Taken from

    After some confusion over the results it now seems confirmed that the results are as follows for the XMRV tests from UK patients sent to the WPI:
    1 positive PCR and Culture
    7 further positive Cultures
    7 negatives.

    There are 15 results as 1 person got the test done 'outside' of the organised group.​
  2. Knackered

    Knackered Guest

    The post in that thread that says people live on average 25 years less, is that true? If it is it'd put life expectancy at around 55 years.

    It's scared me, I don't wanna die middle aged.
  3. Esther12

    Esther12 Senior Member

    It sounds pretty similar to the general results that have been posted on this board.

    Hmmm.... wait and see. It looks like the 'geographic differences' theory, which always seemed odd to me, isn't panning out. It also seems that the PCR test is picking up less of a correlation between XMRV and CFS than was reported in the Science paper (now I've typed this I'm a bit unsure I've remembered that correctly - PCR was used for the initial 67% wasn't it?). It's probably a bit silly to give too much weight to such a small sample, but it's interesting to hear how things are developing. The majority positive for cultures, but only one positive PCR.

    I wouldn't worry about it. Predicting mortality rates for a disease as variable and poorly understood as CFS is going to be really difficult and vague - there are so many different factors. Don't go booking your 80th Birthday holiday just yet, but there's no need to start planning your funeral either.
  4. Martlet

    Martlet Senior Member

    Near St Louis, MO
    The friend who went down with it before me, around 1989, is about 70 years old now. She still has it but is still very much alive.
  5. Martlet

    Martlet Senior Member

    Near St Louis, MO
    Esther, I think WPI had a well-defined cohort whereas we have no objective information about people sending off for tests themselves. I think this might explain the discrepancy.
  6. Esther12

    Esther12 Senior Member

    That's true. Presumably this group could even include relatives? Interesting stuff.
  7. oerganix

    oerganix Senior Member

    Don't worry, be happy

    I'm 62 and only half dead. :tear:

    Had this since 1982, totally disabled since 1988.:sofa:
  8. Mark

    Mark Former CEO

    Sofa, UK
    Very interesting. The overall figure remains around 50% positive, which is consistent with the findings from the polls on this site. But only one positive PCR test out of 15. Since the tests here were WPI's own, what jumps out is that the profile on these UK results differs from previous WPI results only in that the PCR tests were much, much lower than the WPI has been finding with other patient groups.

    It looks as though the PCR test may not be working on UK samples. Feasibly due to some regional factor, such as a difference in the XMRV genome in the UK, or the genetics or viral load of the patient population - but the explanation I'm going for is that it's important how you collect, store and transfer the blood and the PCR tests can fail if this goes wrong. I read a very credible comment to that effect recently on this forum, so some theory like that would seem to make scientific sense.

    In any case, the idea of a 'regional difference' meaning there is no XMRV in the UK - which was always a quite ludicrous theory advanced strongly by the IC authors themselves with no evidence in favour and in the face of strong evidence against - is ruled out by these results. If the WPI are reporting significant levels of positives from UK patients, then the discrepancy is between the techniques used and not between the patient populations.

    Overall, taking all the evidence into account (including the discrepancies between the prostate cancer studies), the implication to me is that there are subtleties to PCR testing that aren't yet understood. There must be some aspect of the procedure which is done differently and makes a crucial difference to the effectiveness of the test. A rather more likely theory than the idea that this virus lives in the US and Japan but not in the UK!

    So Wessely's study hasn't dampened my mood or caused me to question the WPI findings. What does scare me about it, though, is the uncritical way it was reported and the insidious way they kept all their unscientific politically-motivated speculation and slurs for the press releases, and out of the paper itself. They were able to advance ridiculous conclusions that weren't in their paper, and get them reported universally in the UK, and this gambit was powerful enough to persuade the Spanish study to give up. So I'm not worried about the validity of the WPI work, but I'm more scared than ever by the capabilities of the establishment to manipulate scientific research.
  9. kat0465

    kat0465 Senior Member

    watch the documentary called"i remember me" there was an out break of this mess in the 50's and most of those women are still kickin, i keep hanging onto that as im also a fraidy Kat,i even have a hard time with test results.
    i would ratther not know, but thats not good either:(
    OOh And as im fast approaching middle age,Im hoping that with the XMRV news, it will give us alll some quality of life before were done here
  10. bullybeef

    bullybeef Senior Member

    North West, England, UK
  11. Min

    Min Guest

    Please does anyone know when this test will be more widely available? I'm in the south west and there's no way I could travel to London, I'm just too ill. Nor will my GP agree to my blood being taken privately at the surgery to be sent off somewhere for testong, cos I already asked about it for mitochondial trsting..
  12. natasa778

    natasa778 Senior Member

    Could this be down to difference between PCR techniques/assays used in the study as opposed to (scaled down?) ones used in these commercial tests?
  13. Smulan



    I dont know but patient selection for the study may have been in favor for active infection.
  14. dipic

    dipic Senior Member

    I would like to see a source for that claim (if one even exists). I've heard it repeated it numreous times but never with a reference provided.
  15. Here you go:

    Research on mortality of ME/CFIDS patients

    It is potentially scary stuff but remember these facts:

    - this certainly helps to show that it's a serious physical problem that requires treatment
    - things are looking more positive than ever for us with the weight of research increasingly pointing to a physical cause with more and more doctors joining in the search
    - I am not sure this study has been replicated or validated
    - it's only a probability - you could still live to be 90. Or you might choke on a pretzel tomorrow. Who knows?
  16. leelaplay

    leelaplay member

    Hey knackered - I share your concern.

    Dipic - I'm surprised you haven't seen the reference. The Jason 2006 study, I think was the first (but Im not that aware of the research anyone jump in if you know of more). And more recently theres the two Maes 2009. Here they are (sorry - not all the links transferred and am too tired to go them now):

    Causes of death among patients with chronic fatigue syndrome.
    Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S.
    DePaul University, Chicago, IL 60614, USA.
    Health Care Women Int. 2006 Aug;27(7):615-26.

    Chronic fatigue syndrome (CFS) is a debilitating illness affecting thousands of individuals. At the present time, there are few studies that have investigated causes of death for those with this syndrome. The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS. There were approximately three times more women than men on the list. The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The implications of these findings are discussed.
    PMID: 16844674 [PubMed - indexed for MEDLINE]

    Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you: disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS.
    by: Michael Maes, Frank Nm N. Twisk
    Neuro endocrinology letters, Vol. 30, No. 6. (30 December 2009)
    View FullText article Pubmed, Hubmed

    There is evidence that disorders in inflammatory and oxidative and nitrosative (IO&NS) pathways and a lowered antioxidant status are important pathophysiological mechanisms underpinning myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). Important precipitating and perpetuating factors for ME/CFS are (amongst others) bacterial and viral infections; bacterial translocation due to an increased gut permeability; and psychological stress. Recently, Jason et al (2006) reported that the mean age of patients with myalgic encephalomyelitis/chronic fatigue syndrome dying from heart failure, i.e. 58.7 years, is significantly lower than the age of those dying from heart failure in the general US population, i.e. 83.1 years. These findings implicate that ME/CFS is a risk factor to cardio-vascular disorder. This review demonstrates that disorders in various IO&NS pathways provide explanations for the earlier mortality due to cardiovascular disorders in ME/CFS. These pathways are: a) chronic low grade inflammation with extended production of nuclear factor kappa B and COX-2 and increased levels of tumour necrosis factor alpha; b) increased O&NS with increased peroxide levels, and phospholipid oxidation including oxidative damage to phosphatidylinositol; c) decreased levels of specific antioxidants, i.e. coenzyme Q10, zinc and dehydroepiandrosterone-sulphate; d) bacterial translocation as a result of leaky gut; e) decreased omega-3 polyunsatutared fatty acids (PUFAs), and increased omega-6 PUFA and saturated fatty acid levels; and f) the presence of viral and bacterial infections and psychological stressors. The mechanisms whereby each of these factors may contribute towards cardio-vascular disorder in ME/CFS are discussed. ME/CFS is a multisystemic metabolic-inflammatory disorder. The aberrations in IO&NS pathways may increase the risk for cardiovascular disorders.

    Neuro Endocrinol Lett. 2009;30(4):470-6.
    Coenzyme Q10 deficiency in myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is related to fatigue, autonomic and neurocognitive symptoms and is another risk factor explaining the early mortality in ME/CFS due to cardiovascular disorder.
    Maes M, Mihaylova I, Kubera M, Uytterhoeven M, Vrydags N, Bosmans E.
    Maes Clinics, Antwerp, Belgium.

    INTRODUCTION: Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a medical illness characterized by disorders in inflammatory and oxidative and nitrosative (IO&NS) pathways. METHODS: This paper examines the role of Coenzyme Q10 (CoQ10), a mitochondrial nutrient which acts as an essential cofactor for the production of ATP in mitochondria and which displays significant antioxidant activities. Plasma CoQ10 has been assayed in 58 patients with ME/CFS and in 22 normal controls; the relationships between CoQ10 and the severity of ME/CFS as measured by means of the FibroFatigue (FF) scale were measured. RESULTS: Plasma CoQ10 was significantly (p=0.00001) lower in ME/CFS patients than in normal controls. Up to 44.8% of patients with ME/CFS had values beneath the lowest plasma CoQ10 value detected in the normal controls, i.e. 490 mug/L. In ME/CFS, there were significant and inverse relationships between CoQ10 and the total score on the FF scale, fatigue and autonomic symptoms. Patients with very low CoQ10 (<390 mug/L) suffered significantly more from concentration and memory disturbances. DISCUSSION: The results show that lowered levels of CoQ10 play a role in the pathophysiology of ME/CFS and that symptoms, such as fatigue, and autonomic and neurocognitive symptoms may be caused by CoQ10 depletion. Our results suggest that patients with ME/CFS would benefit from CoQ10 supplementation in order to normalize the low CoQ10 syndrome and the IO&NS disorders. The findings that lower CoQ10 is an independent predictor of chronic heart failure (CHF) and mortality due to CHF may explain previous reports that the mean age of ME/CFS patients dying from CHF is 25 years younger than the age of those dying from CHF in the general population. Since statins significantly decrease plasma CoQ10, ME/CFS should be regarded as a relative contraindication for treatment with statins without CoQ10 supplementation.
    PMID: 20010505 [PubMed - in process]
  17. julius

    julius Watchoo lookin' at?

    The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population.

    So, considering that suicide is such a huge factor...alll you have to do is hang in there and you increase your lifespan by a lot.
    I don't think many of us will be packing in right now, not with such promising prospects staring us in the face.
  18. Kati

    Kati Patient in training

    Julius, "hang in there" says it all :eek:;):D

    United we stand. There is hope.
  19. flybro

    flybro Senior Member

    I spoke to a woman on WPI facebook who was in her 80's, she got it in her 30's I think she said.
  20. Knackered

    Knackered Guest

    This is what worries me, I was never really that worried but my heart's racing now, I'm glad I stopped smoking 5 years ago.

    Should I be taking CoQ10 supliments? I take a multi vitamin everyday and a cod liver oil capsule. What else should I be taking?

See more popular forum discussions.

Share This Page