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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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*NEW* information from WPI (30th March)

Discussion in 'XMRV Research and Replication Studies' started by VillageLife, Mar 29, 2010.

  1. starryeyes

    starryeyes Senior Member

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    Esther, are you implying that people with CFS who get cancer got it because they didn't eat well enough? To me, that seems insulting and naive. And I agree with Justin; we need to get the word out that ME/CFS is very harmful to the body and can and often does lead to cancers.
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    ok, let's see.

    The Science cohort includes one person who developed cancer. I understood they had some other cancer patients in at first, but took them out of the reported figures before publication. (Maybe they missed one)

    I think the confusion is that the Science paper did not address if or how many of the cohort had cancer. Then, Peterson gives a presentation at the CFSAC showing the testing of cancer patients. His point was to show that not only is there a link between XMRV and CFS, but there is a link between XMRV and cancer, requiring more study.

    So, the question naturally was, how many cancer patients were included in the original cohort. Peterson didn't say the cancer patients he talked about at CFSAC were in the original cohort. But seems some assumed. And remember that for WPI, after May, they had moved on with studying XMRV beyond the original cohort.

    I think that for Mikovitz and Peterson, in their mind, it is a non-issue. Peterson has seen evidence in his clinic that whatever causes CFS causes cancer. And Mikovitz knows that other human retroviruses cause cancer, so for her, it is entirely consistent that the same virus causing immune system problems in CFS patients are also causing some cancers.

    So it would not have seemed like a big issue to them. Now, for researchers on the outside, especially those who doubt a viral cause for CFS, would claim that maybe XMRV causes cancer but not CFS, so a study that includes both would be flawed. The level of understanding of the illness is just vastly different betweeen Mikovitz / Peterson and the critics that it is hard to imagine what concerns / questions might be raised to address in the front end. Peterson and Mikovitz sees it so clearly, it is hard for them to imagine how others with doubt would see it.

    You can see, that they are not backing off the connecting XMRV to cancer, even in these questions and answers, despite no published studies (that we know of). At this point, I believe whatever causes CFS also causes cancer. But, in these questions and answers, we need to see that it is entirely possible that the ones who had cancer that they tested also had CFs and the XMRV caused the CFS, but the cancer is just by chance, caused by something else. Not everything a CFS patient has is necessarily caused by same thing as CFS. It is possible we can get heart disease, cancer, diabetes, or other common illnesses and it have nothing to do with CFS. The key is in the rates. I believe there is higher incidence of cancers, particularly lymphomas and saliva gland cancers. But nothing in the WPI studies so far, even their claims of finding XMRV in CFS patients with cancer, indicates link between XMRV and cancer.

    Except of course, the link already shown with prostate cancer patients.

    Now, let's see a study that looks at how many people with Canadian CFS and XMRV have cancer compared rate of cancer in healthy controls.

    As to the people from around the world. This is inconsequential. Their intent was not to get people who got sick while in other countries. Their intent was to get US patients from many places around the US. Only did other countries become an issue when UK study concluded XMRV does not cause CFS in UK patients. So Mikovitz made a big issue later that she discovered that some of the original cohort were from other countries, including UK. She was then making a different point from the original study purpose was.

    I think this is a key to understanding all of this. The Science study had a very limited purpose:
    XMRV occurs in high rate in CFS patients from different areas of US. This deserves further study.
    XMRV occurs in healthy but at a much lower rate.
    XMRV is an infectious gamma retrovirus.

    That's it. After they made that point, WPI went on to other studies. The problem is that the things they looked at afterward: found in cancer patients, FM patients and Autism patients, were stated before peer-reviewed publication. I have no problem with that, but other researchers do and it is part of what has caused the confusion. "So when they say this, are they talking about original study patients or others afterward?"

    The enthusiasm and blunders after the Science publication does not make me doubt their original study results, which were vigorously tested before publication. Gosh, I don't know if I could have kept it (original Science study results) quiet for as long as they did. A few interviews with Mikovitz had her saying to expect some news. You could see she was about to bust.

    So after she gets published (in the most respected journal) then I can understand the natural tendency release all that you have been holding back for months, including results from testing after publication. Point was made, kept quiet for so long, now no need to keep quiet.

    Not best, but completely human given the circumstances of being quiet for so long. As I said, when publication was made, from their view, point was made, they met the high standards, no one should doubt.

    Nothing about any of this takes away from my trust in Mikovitz, a retrovirologist with a long respected resume and a history of new retrovirus discoveries.

    Tina
  3. starryeyes

    starryeyes Senior Member

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    She said it on the video, Bob, and many of us have been quoting it here. Besides, we now have several people here from the UK who have ME and are positive for XMRV.
  4. Gerwyn

    Gerwyn Guest

    i think the point is that people made assumptions when they should not have.A scientist checks those assumptions before proceeding.The scientists here did not they made two and two equal seven

    they normally say that assume means making an ass of u and me

    In this case the ass is nothing to do with u or me but describes them perfectly
  5. starryeyes

    starryeyes Senior Member

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    I agree Mark. I'm of the same mindset for this and many other reasons. I also agree that no matter what the WPI does or how well they explain what they do, there will always be people who don't trust them. Just look at all the people who still don't believe that HIV causes AIDS. They don't come around with any amount of evidence. There will likely be people who will always believe that XMRV is not related in any way to CFS and then there will be those who don't even believe XMRV exists or exists in their country... etc...

    That's just human nature.

    I like your sig too Mark. I was actually surprised to read your post this morning. I thought you were one of the people that didn't trust the WPI.

    Wow! I hope you don't mind that I corrected that for you Ger, so that we could all understand it better with our foggy brains. Thank you for writing that. I think that is very likely and very important for us and the researchers to keep in mind.

    This completely fits with all of the biological work that the NCF (National CFIDS Foundation) has been documenting in their newsletters since at least 1991.

    I used to read those cover to cover with a dictionary.

    That's the crux of the matter. Anyone, like Vernon for instance, who is continually questioning whether the original cohort had cancer or not clearly does not believe that CFS could be caused by a virus and that's where many of us are butting heads. That's the real issue.

    People who don't believe that CFS could be caused by a virus will probably never be satisfied with the information they get about XMRV testing from the WPI or anyone else who finds XMRV in large numbers of PWC.



    I feel exactly the same way!
  6. Gerwyn

    Gerwyn Guest

    dont worry about correcting it.i know my typing is rubbish but i cant see when I mistype!
  7. Lesley

    Lesley Senior Member

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    Gerwyn, your typing may be "rubbish", but what you have to say always makes it worth sorting through.
  8. Bob

    Bob

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    Thanks teejkay,
    There's so many different strands of information about the Science study that, unless I make notes as I come across new info (which I don't), it's impossible to remember what I've heard, seen, read etc., and who said it, when they said it, what the source of the info is... etc. Especially when so many rumours and so much mis-information have been spread around about the Science study, including by some of the UK scientists.
  9. Bob

    Bob

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    This info from the WPI is so welcome... and I'm so pleased that they released it...
    it clears up so much of the mis-information, rumours, chatter and gossip that's been peddled by certain sections of the scientific community...

    Does this info clear up all of the remaining questions and uncertainties, for us, surrounding the Science study?

    Every time the WPI give out new information, my confidence grows about the quality and professionalism of WPI and the significance of XMRV.
    And, ironically, every time a new negative study is published in the UK, my confidence in the WPI is also increased!
  10. Bob

    Bob

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    I don't know if I'm mis-reading your comments teejkay, but they seem rather harsh on Esther.

    To be fair to Esther, the comments were clearly meant in a light-hearted, humorous way... They obviously weren't to be taken seriously, and they were not meant to detract from the discussion.

    It was a response to the comment that we shouldn't be "afraid about the cancer information"... Esther is expressing that he is not going to be personally downtrodden by any fear relating to the cancer information... good for him!

    I think we'd all agree that ME/CFS is a serious illness, and that it's very harmful...
    But I think that, before we start giving cause to people to be fearful about the risk of cancer, maybe we should have some solid statistics about this risk of cancer?... I don't know if there are any?
  11. wideawake

    wideawake

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    Actually, as a cancer patient, Esther's comments did upset me slightly (as eating well and healthily is my main hobby!) but I realise that this forum is for ME sufferers and her comments were just to reassure people so no offence taken whatsoever.
  12. Esther12

    Esther12 Senior Member

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    Thanks for the comprehensive reply mark. Very thorough!

    >People are really funny to me if they trust scientists on the basis that (a) they are super-big corporations and have great glossy PR, and (b) they don't tell the public anything until they've waited for somebody else to give them the OK, but instead keep all the latest knowledge to themselves for a year or two and only share it backchannel within the scientific priesthood.

    Yeah – but the trouble is that lots of scientists are funny like this!! Personally, I wish the WPI was focusing it’s PR and communications strategy at the scientific community for now. Play along with their funny rules and customs – give them no excuse to be dismissive of the work you’re doing.

    This shouldn’t matter, but with three negative CFS/XMRV studies some scientists will be feeling sceptical anyway. Releasing this news about autism might make them even more so. We know that the autism-vaccine thing is a real bug-bear for a lot of scientists, and it’s something I’d have preferred them to stay more cautious about at this point.

    >Of all the information I'm hungry for, the details of how the samples were blinded isn't high on my list.

    My big fear since the Science paper is that they treated the samples differently, and that when they’re blinded the 97% vs 4% difference will disappear to nothing. That seemed to be what happened with DeFreitas. I thought the WPI had said that they could not get multiple samples for all their healthy controls – so presumably not all healthy controls were treated exactly the same as CFS patients? I’d love to have more info on exactly how their work was blinded. If all the samples were really treated in exactly the same way I’d be able to feel a lot more confident about their work.

    Sorry about that. I certainly didn’t mean anyone to think that I really believed a healthy diet would be able to over-come any retro-virus going. Now that I think about it though, there are people who insist HIV can be cured with lots of fresh orange juice. No matter how crazy a comment you make, there will always be some people who believe exactly that!
  13. shrewsbury

    shrewsbury member

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    Hi widewake - and welcome to the forums.

    I admire your ability to be perceptive & open-minded, and to let things go.
  14. V99

    V99 *****

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    Saying it's not rocket science is definitely the wrong thing to say, but all we need is a proper replication study. Same methods, same cohort. It's not rocket science.

    Knowing how they blinded the samples will not really make the situation any clearer.

    Then the rocket science can begin. Working out why the second study either supports/ or refutes the original study.



    As for eating well. Well, I always have, even before I got sick. Doesn't stop you getting anything, but it may help a tiny weeny bit :D if you do.
  15. Adam

    Adam *****

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    Wonderful summary Tina of all the events and the reasoning behind some of the moves and comments. Should be front page on forum. What do you think Cort?
  16. Doogle

    Doogle Senior Member

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    If I am understanding this correctly you are saying the Science study did not contain any of Dr Peterson's patients? I believe that's not correct in that what was said is that none of the blood samples in the Science study came from Dr Peterson's sample repository, all came from WPI's. It is my understanding that many of Dr Peterson's patients had their blood/tissues in both repositories, so some of Dr Peterson's patients would have shown up in the Science study.
  17. Robyn

    Robyn *****

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  18. Mark

    Mark Acting CEO

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    On Absolute Faith

    Quite right. We will never be completely free of such scepticism, and nor should we wish to be.

    Trying to draw several recent strands of this thread together into a general principle: whenever us humans have a strongly held and generally-true belief about pretty much any proposition, and we apply that belief to a situation where our belief doesn't hold good, we end up mangling the facts and fitting them into a seriously flawed conclusion which then seems to us to be undeniably true.

    That's just human nature. When we don't want to believe something, we find a way to justify our own belief, and there's always a way to do it. The world is so complex that there's always a perfectly logical chain of reasoning to be found, based on what looks to us suspicious but is merely noise in the system.

    Tina has set out a wonderful and probably very accurate narrative explaining exactly how several unfortunate false conclusions about the cancer issue came to be made by many people. Fundamentally, people who assumed that the WPI findings must be wrong because of deeply held beliefs, managed as we always do to find sufficient hooks to hang their doubts upon.

    On whatever level, Wessely and the Imperial College researchers, and probably the Kerr group as well, managed to make the same mistake, and could easily do so in all good faith by making assumptions about the science that they didn't think were worth checking too rigorously because they were only aiming to prove what they already 'knew' to be true.

    Vernon, due to her pre-existing beliefs about CFS that nearly all of us had probably assumed (that CFS is complex, diverse and multi-factorial and therefore doesn't have one single cause) felt sure there must be something wrong with the study, and concluded - like many, many people - that the cohort the WPI studied must be special in some way and the researchers must be looking only at a subset of CFS if they are claiming figures as high as 98%. So she looked for the evidence, and of course she found what she expected to find: a clue that seemed to suggest there were too many cancer patients in the study, prompting the theory that the cohort was drawn only from the Incline Valley cohort that Dr Peterson had been tracking for 20 years. The whole picture made sense, so she was sure she had identified something true and important, and shared it with the world.

    The example I like best today, though, is this one:

    To me - and it's perhaps a joke that only I can really get - that is the funniest thing I've read today, and that is really saying something!

    Ever since I heard the WPI news, read the Science paper, watched the CFSAC presentation live, studied the detail, explored the ins and outs here on this forum, and then reached my conclusion in the space of about one week, I have been absolutely and firmly convinced that the WPI study was correct, and I have been an ardent - even perhaps at times over-zealous - supporter of the WPI. I looked at them, and felt that I could trust them, and I've posted here many, many times expressing that near-absolute faith in them, trying to defend them from unfounded suspicions, and stating that those who have doubted them seem to have a fundamental distrust of the WPI that seems insolent and disrespectful to me.

    How on earth, Teejkay, did you come to the conclusion that I didn't trust the WPI? That leaves me almost speechless! I thought I was their number one fan!

    I hope it's not going to be impertinent to you, Teejkay, to speculate how you might have formed this impression. There must have been some pre-existing belief of yours, into which some small piece of evidence, some comment or behaviour of mine fitted neatly, and led you to a conclusion about me. Did I perhaps ask a searching question, seeking clarification of something I didn't understand, that you read as scepticism? Or is it related to my robust defence here of other people (Esther, Holmsey) who asked similar questions, and I became tainted by association? I'd love to know where that belief of yours came from, and I'd like to gently suggest that if you were to analyse how you came to make this mistake, there must be an opportunity there to modify or relax some flawed assumptions in your mental map of the world - we all have them, I don't know what yours might be, but it's always worthwhile exploring such things IMO.

    The example of the (to me) ludicrous suggestion that Esther is an undercover somatiser, no matter how many times she says over and over again that she hates and disbelieves the somatisation theory (and yet wishes to explore it and explore the beliefs of the somatisers - confusing sophistication I know): that example might even be more extreme than thinking I don't trust the WPI.

    I'm going too far here perhaps, but could your misunderstanding of me be related to the pre-existing belief/fear that there are spies in our midst with a hidden agenda to discredit the WPI, and that their searching and provocative questions need to be prevented rather than answered? And does hitting that Ignore button that lets you disregard anything you don't want to hear (a button I would disable globally if I had my way) help you to maintain that belief about me as a WPI sceptic? Or is it related to misunderstanding of the way I hold a strong belief and yet continue to ask probing questions about that in which I believe (a trait I find all too rare in humanity?).

    I hope I'm not being offensive or being seen to attack you personally there, Teejkay, I honestly mean no disrespect, but it's quite jarring to me that after everything I've said here over the last few months, you are still able to think that I don't trust the WPI? That's quite upsetting: the points I make are so over-complicated that obviously the simple but more limited message I could have expressed instead gets lost along the way. That idea that I don't trust them could only be true in one very limited sense: I make it a principle that I don't, ever, trust anyone, or anything, 100%. 99.999% may round up to 100%, and sometimes like all of us I use confusing shorthand due to the limitations of language, but there should always, always be room for doubt. Always. Well...99.999% of the time, at least...
  19. Mark

    Mark Acting CEO

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    Keeping it simple for a change: I Agree!
  20. V99

    V99 *****

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    What is the publication date for Science magazine, the print edition? Anyone know.

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