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German study finds xmrv

Discussion in 'XMRV Research and Replication Studies' started by bel canto, May 18, 2010.

  1. Sasha

    Sasha Fine, thank you

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    Thanks, Bullybeef. I think that we need to bear in mind, though, that with XMRV, the most realistic worst case scenario if the XMRV/CFS link pans out, given current information, looks like scientists telling the media that XMRV has relatively low infectivity, no evidence yet about mortality but clearly not rapid (decades) effects on mortality, CFS is seriously disabling but only affects a small minority of XMRV+, antivirals looking good in vitro and trials imminent, etc. They'll also be telling them that we're identifiably sick, which will be great.

    I think that this is a not a bad worst case scenario to have, relatively speaking! Just my view, though. I understand the need to try to imagine the worst and to ask others to help think it through. I'm glad we've got this forum for that!

    Exciting times!:D
  2. alex3619

    alex3619 Senior Member

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    Hi Sasha,

    I am not an epidemiologist, but I would have to say that there could be serious and unnecessary alarm, and I am particularly worried about severely distressed patients who might think about self harm. This is particularly true of depressed patients with close family. So a little care is required.

    However the original question was a hypothetical, a "what if" scenario, not a declaration that this was the actual case.

    I think Wessely will get off without serious trouble, but with such a bad rep that ALL funding will dry up, government or private, IF all this pans out as you describe. The powers that be wont want a precedent for prosecuting doctors for actions that took place in an absence of the medical science being done, and I think Mark's comment that he can claim that nobody could know before 2006 is correct, with the further defence that WPI discovery wasn't published until Oct 2009, so up till this point it has only been months and not years - surely, they will defend, we couldn't have reacted much faster than that and still be responsible?

    This is only one scenario, there are many others of course.

    As to the bigger picture, here are a few pie-in-the-sky predictions that might even come true a year from now:

    1. Work will commence on a vaccine, we will be promised one but it will be delayed for a while citing "budget cutbacks".
    2. Antiviral and antiretroviral therapy will be used on large numbers of people but the large study they need to ram it through for global treatment wont exist because the study they just did was too small and not long-term enough so they want a larger and longer one one, but ooooh, those damned budget cutbacks!
    3. Blood and organ donation from ME and CFS patients (not just CCD CFS patients) will be banned nearly everywhere, indefinitely. Mass screening of blood donations for XMRV will commence.
    4. The media will run massive numbers of articles for a few months and then it will fade to a page deep inside the newspaper, as the latest global disaster makes front page. From time to time it will resurface, however, whenever they feel the need to boost circulation via a scare campaign.
    5. Governments worldwide will quietly realize the situation is serious, and debate endlessly about what to do about it, given their fiscal situation.

    ;-) Colour me a cynic.

    Bye
    Alex


  3. alex3619

    alex3619 Senior Member

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    Hi Sasha,

    I agree that the likely case is very different from the worst case. Given what has been happening in global financial markets, serious funding might be a little slow, and that is my main concern. Most major governments will want to slash budgets, not spend more money. Only the risk of a global panic will force their hands, and that probably requires a scenario worse than the one we expect, either that or some irrational sensationalistic reporting by the media sector.

    Bye
    Alex

  4. Gerwyn

    Gerwyn Guest

    This virus inserts into GpC islands.This means that it could be capable of regulating every gene in the human body. If we want funding that is the message.it makes HIV deadly though it is look like a pussycat and is already ten times higher in the population than the HIV virus!
  5. Otis

    Otis SeƱor Mumbler

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    Regarding #3 above, it's the other edge of the Oxford criteria sword would likely rule out donors with no physical illness.
  6. Esther12

    Esther12 Senior Member

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    I think some people are putting too much emphasis on the 4% figure.

    I just read that results for the control groups were:

    "XMRV sequences were detected in 3 of 75 samples (2.3%) in group 1, 1 of 31 samples (3.2%) in group 2"

    So the 3.2% figure was based on just one positive.

    This German study seems to show that XMRV is circulating out there, and if so, something's wrong with the negative CFS/XMRV studies, but the numbers looked at were pretty small.
  7. HopingSince88

    HopingSince88 Senior Member

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    I am not so sure about the comment "mortality ... clearly not rapid (decades)," - because we don't know yet what cancers may be caused by XMRV. I would think it is possible that some people do not get ME/CFS, but do get aggressive cancers-even at a young age. I have a cousin that had brain cancer in her 20's, another with an aggressive breast cancer in her 30's. I have had neighbors die of cancer who were only in their 20's and 30's too. So it is possible that their immune system was more seriously compromised by XMRV, or an XMRV-type of pathogen.

    If this turns out to be the case, then I think the world will sit up and take notice.

    I also think the governments that are 'in the know' will keep this all under wraps until a vaccine is available, in order to keep down any panic.
  8. bullybeef

    bullybeef Senior Member

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    Another big difference between this and HIV is it maybe more prominent in western society. Dr. C suspects this has been within humans for 50 years, unchecked, possibly infecting the blood supplies and individuals.

    Does anyone know how long they suspected HIV to be within humans?
  9. RE: The question about having to wait years to prove what XMRV might do to people...........

    Well in my view, It's easy to show mortality to rate in ME/CFS and link these deaths to XMRV.

    Health agencies just need to look at the people with ME/CFS who died prematurely from heart failure, cancer, and infections and compare these to age matches controls who didn't have ME/CFS label.

    If people are dying in their 40's and 50's from significant rates of disease (all who had a label of ME/CFS in their teens and twenties) the answer is there that XMRV could wipe out more people than your girlfriend trying to master Super Mario Cart on the Wii.

    Only one study has been done to my knowledge by Jason et al in 1996. 25 years loss in life expectancy. That fits in perfectly with a retrovirus like HIV, or XMRV.

    Think of all the people with ME/CFS who have blatant symptoms of diastolic heart failure yet who have no diagnosis of heart failure (due to it being mitochondrialy based and thus ignored) and who still keel over with stroke and cardiac events far too young. This started happening to me when I was 23 and I just happen to be XMRV+ all these years later. There was I linked up to beeping machines totally clueless asking myself why am I the only ME patient in cardiac care unit? Probably as the others never got there in time, that's why. :(

    Heart failure ruins lives through loss of mobility, chest pain, loss of intimacy, people can't sleep laying flat without a bed-raiser, people are destroyed in hot weather and have exertional dyspnea (shortness of breath) and even water retention before their kidneys pack in. (Everything people with severe ME claim they have), who are now testing positive for XMRV. That's why these ME folk are on oxygen when the temperature hits 30c, or they would be if they were allowed oxygen in countries like the UK.

    Disablity in ME, it's hidden because it taboo for a doctor to see with their own eyes or listen with their ears what ME patients say, because by doing so would 'encourage' their neurosis. Eventually patients don't bother complaining, so like me the live like an old man and come the summer stick their head in the fridge and wonder why the cat keeps meowing for milk. Better to save face, than go begging too many times and made to look a fool.

    Hence in my medical records after being very ill it stated ''de-medicalise'' and not ''investigate heart problem''. Wessely school of psychiatry orders this in writing, so doctors copy it as it's called 'evidence based medicine'. I'm not a one off, this is institutional in the UK with socialised medical health care.

    Every month since XMRV discovery at the WPI, the injustice and the stupidity of the Psychiatric profession builds and builds into a foghorn blast of wrong doing, that when ME patients are accepted (and not hated as sub human citizens) the clowns of medicine will go down in history of having committed the most spectacular of crimes against innocent people, including children.

    Lets not give in, but believe in the people who believe in us and have our best interests firmly at heart, because they care. And they care, because on behalf they will press STOP on the cassette tape player of wrong-doing and PLAY on bio-medical research that was (and still is) prohibited for people with the label ME CFS. A situation of xenophobic disgust of patients with ME CFS and thus, medical apartheid.

    All at odds with the ethos of the hippocratic oath: First do no harm. Well enormous harm continues to the second I type and you read this. Thank the good lord the WPI turned up and pointed scientists (who were looking out the window) to the evidence in front of them that was there all along. At least through this smashed life we live, someone's coming with the hoover to clear the mess up - even if for many it's too late.

    People go on an exodous for religious reasons. If I get better I want to go on exodous for people who died and pay my respects to them. I want to walk with thousands of recovered patients in silence. Because in life, and from the medical profession - these poor folk who are no longer with us, got nothing but disrespect. We can only do this with bio-medical research and drugs.

    How ironic, that only then can we have the mobilty to pay our respects to the dead. That day will happen I am sure. Banners, solidarity, and respect. Only then can we show the world what has happened, and only then will the gravity of the situation be realised by the deceived public. On that day, maybe the leaders of the Psychiatric gestapo will be jailed, or indeed considered with rightful venom.

    A venom they injected into us for decades and laughed in our faces as we begged for mercy. XMRV is a snake and WPI will slice it in two eventually so we can be free and live without so much sustained fear and misery. Somwhere in there, is faith for better times ahead. Something unthinkable before October 2009.
  10. alex3619

    alex3619 Senior Member

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    Hi Gerwyn

    I completely agree with you. This is how I see it too although I have not researched the genetic side of it anywhere near as much as you have. I am very worried that XMRV might reach a critical mass and become pandemic. We simply don't know enough and have ignored it for way too long. We also know almost nothing about how it interacts with other pathogens or medical conditions. This lack of knowledge alone I find scary.

    On a good news front, though, Cort has commented that some drug companies are interested in starting clinicalical treatment trials - once that happens much of the debate will be over, we will either have a treatment or nothing. I am betting on treatment. We have of course heard this rumour before, but it is always nice to hear more confirmation.

    Bye
    Alex

  11. alex3619

    alex3619 Senior Member

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    Hi Otis,

    Point taken, I haven't been thinking about that, but the silver lining is this might cause the blood banks and medical establishment to finally turn against the Oxford criteria.

    Bye
    Alex

  12. alex3619

    alex3619 Senior Member

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    Hi DysautonomiaXMRV,

    I liked the medical apartheid line. I wonder what political and media advocates could do with it?

    Bye
    Alex

  13. Adam

    Adam *****

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    Mantra

    To all those doctors, professors, so-called scientific researchers, politicians etc. out there, who would like to bury XMRV, us guys here have a very important message to give you...


    NO YOU CAN'T


    :cool::cool::cool::cool:

    say it again

    NO YOU CAN'T

    :victory::victory::victory:

  14. awol

    awol *****

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    Yes We Can!

    oh...I mean oups! ;)
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Remember, often causality happens at the same time treatment is discovered. Komaroff pointed this off in his last speech. I have heard this before.

    The idea is that high rates in disease with low rates in healthy is a key part of it. Then, you can see how the agent acts in blood and hypothesize that the actions in the body are causing symptoms. But, to prove causality, often it takes a treatment that hinders or eliminates the agent, and a corresponding lessening of symptoms.

    Tina
  16. dancingstarheart

    dancingstarheart

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    Tina, that is a really good point. I was afraid that researchers were jumping the gun by looking for a treatment for xmrv without understanding of pathogenesis. Now, I am not concerned. They are taking the quickest route to proving a disease and finding treatment at same time. :D
  17. Ecoclimber

    Ecoclimber Senior Member

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    Unfortunately, there is a lot of corporate money out there to snuff this out, sabotage it or side line it especially in the UK.

    MRC Secret documents:
    It was on 17th May 1995 that Wessely, Sharpe and Wesselys colleague, behaviour therapist Trudie Chalder, all spoke at a Business Symposium in London attended by UnumProvidents Dr John LoCascio: information presented included informing attendees that ME/CFS has been called the malingerers excuse. Extracts from UnumProvidents Chronic Fatigue Syndrome Management Plan are pertinent: Diagnosis: Neurosis with a new banner. UNUM stands to lose millions if we do not move quickly to address this increasing problem. Attending physicians (must) work with Unum rehabilitation services in an effort to return the patient / claimant back to maximum functionality with or without symptoms.

    Executive summary for policymakers at UnumProvident and the DWP:

    1. Stop recognizing ME.

    2. Stop paying disability benefits for ME.

    3. ME patients in the UK will then stop believing themselves ill.

    4. UK ME patient charities (including AfME) will shut up and go away.

    5. 24.3% of UK ME patients will become illiterate or functionally illiterate.

    6. The UK media will lose interest.

    " What lies behind all this talk of viruses and immunity ?... In consequence, talk of viruses and the immune system is now deeply embedded in popular consciousness ... Viruses are an attribution free from blame ... there's no blame, no shame and no stigma ... and here is the virus research doctor himself to protect us from that shame... And what is it he delivers? Respect!" "viral attribution [reflects] somatization par excellence".

    "Many patients referred to a specialized hospital with chronic fatigue syndrome have embarked on a struggle. This may take the form of trying to find an acceptable diagnosis, or indeed, any diagnosis. One of the principal functions of therapy at this stage is to allow the patient to call a halt without loss of face. ..... [M.E. patients are in] a vicious circle of increasing avoidance, inactivity and fatigue....... "

    "Most CFS patients fulfil diagnostic criteria for psychiatric disorder. Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. .... Do any of these symptoms possess diagnostic significance? The answer is basically negative... The description given by a leading gastro-enterologist at the Mayo clinic remains accurate. 'the average doctor will see they are neurotic and he will often be disgusted with them.' "

    From statements discovered in secret documents and from Weasley over the years
    http://www.meactionuk.org.uk/
    :Retro mad:
  18. alex3619

    alex3619 Senior Member

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    Hi Ecoclimber,

    I agree that insurance companies (with one or two exceptions) will try to fight this. That is business as usual for them.

    Business as usual for Big Pharma is to find a cure or treatment for any new pathogen. While insurance companies stand to lose money, Big Pharma stands to make billions. NOBODY will stand between them and that kind of profit, and they wont even be able to slow them down much.

    Put it another way: either XMRV is causal or pathogenic or it isn't. Once there is enough data, every pharmacological company with candidate drugs is going to push this very very HARD. Big business causes so many problems around the world, but they are also a major factor in making things happen. For once I am happy they will probably be on our side (for a profit of course).

    What insurance companies should be worried about is this: class action lawsuit.

    Bye
    Alex
  19. natasa778

    natasa778 Senior Member

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    just thought I'd mention that Kathy Sudlow, who poo-pooed WPI research all over BMJ and wrote to science, is a collague and collaborator of Michael Sharpe ...

    and so is her collague, J Stone, who also wrote to Science http://www.dcn.ed.ac.uk/pages/profiles/profiles.asp?ProfileId=8


    http://www.dcn.ed.ac.uk/dcn/staff/profiles.asp
    http://www.dcn.ed.ac.uk/dcn/staff/displaystaff.asp?RecordId=121

    what I find 'iinteresting' is that they chose to write in as separate groups of people, to create the illusion of all these unrelated unconnected "concerned" scientists.
  20. lululowry

    lululowry Senior Member

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    I totally agree with this point Alex. AND Big Pharma is not one entity.
    There is Big Pharma A that has profitted and continues to profit from government-mandated vaccines. If any vaccine turns out to play a role in having activated (sorry if this is not the right word) or exacerbated xmrv, watch out. That's Big Pharma + Big Brother combined to fight like heck against monster liability and loss of billions vaccine income if major problems are revealed.
    On the other hand, there is Big Pharma B which stand to make billions on xmrv drugs.
    Battle of the titans...

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