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Discussion in 'XMRV Research and Replication Studies' started by joshualevy, Oct 4, 2011.

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  1. Lee

    Lee

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    Bob:

    My opinion of the PACE trial?

    First, that it is irrelevant to discussions about the 'science' of XMRV.

    Second, that it showed pretty much what they claim - that Cognitive Behavior and Graded Exercise therapies cause moderate improvement in outcomes for people with ME/CFS, but are not cures, while Adaptive Pacing does not. Further, I think that the results of PACE tell us nothing at all about the causes of ME/CFS.
  2. Wonko

    Wonko Senior Member

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    "A prejudice is a prejudgment, an assumption made about someone or something before having adequate knowledge to be able to do so with guaranteed accuracy", at this point very few probably have the information to make a nonprejudiced judgement on this matter, as we dont have the information to make a judgement that isnt, so attacks can hardly not be prejudiced.
  3. currer

    currer Senior Member

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    Lee,

    I hope that as someone who has watched a dear friend suffer with this illness, you are equally concerned by the way that each time a retrovirus has been linked to ME the research has been prematurely curtailed, the researcher's reputation destroyed and funding withdrawn.

    I am sure you are familiar with these episodes from the recent past which are well known to people with ME
  4. alex3619

    alex3619 Senior Member

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    I suspect that even if money turns out to have been "wasted" on XMRV, it was not money that would have been spent on anything else that is ME or CFS related. Indeed, that spending has drawn attention to the issues and led a lot of researchers to have another look at ME and CFS. About the only negative, presuming the argument that XMRV research was a waste is correct (something I do not concede), is that some research funds that could have been spent on something else wasn't. Given the size of redirection of funds allocated to CFS research in the past into other endeavours, I doubt this could have even come close to redressing the balance. In terms of the massive underfunding on ME and CFS it is not even a blip on the radar toward parity.

    MS is a worthy disease that I think is still underfunded. While more lethal than ME it is less disabling on average according to three morbidity rankings I have read over the years. It is also less common. Yet in one year MS gets more research money than ME has ever had, by which I mean the total funding since the 1930s epidemics. If MS research is underfunded, what does that make ME research?

    The real issue is a lack of interest and funding, period. The huge sums wasted on the PACE study for example could have been far more beneficial if they investigated immunological issues instead.

    Bye, Alex
    ixchelkali and kurt like this.
  5. Lee

    Lee

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    @ ukxmrv:

    Silverman? I think he showed definitively that the positive 'XMLV' PCR results were due to plasmid contamination, and confirmed that the early criticisms that the sequences were too similar to the plasmid, and didn't show enough sequence diversity, were correct.

    I also think that his reported protections against contamination were stunningly thorough.

    I also note that the contaminating plasmids were found in ME/CFS samples and not in healthy controls. This was the result that made me personally sit up and go 'hmmmm.' This is NOT a pattern that one sees with PCR contamination - this is a sample handling issue - at best, patient samples were handled differently from control samples, in a way that caused contamination of patient samples.

    I think n evaluating the Silverman retraction, one must also look at JM's claimed ability to reliably find XMRV in patients and only at low levels in controls - and the fact that they were unable to do so when samples were blinded.

    Put all this together, and the only conclusion I can find is that - AT BEST - JM's lab were guilty of handling patient samples differently from control samples, in ways that caused contamination of patient samples but not controls.

    And given this - I don't believe a thing she has reported. She is - at best - too sloppy to be trusted.
    kurt likes this.
  6. Bob

    Bob

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    Hello Lee,

    Thank you for responding. The PACE Trial is very relevant to ME patients. That's why I asked you.

    I can see that you have not carried out an equally critical analysis of the PACE Trial, as you are taking its conclusions at face value.

    In fact, CBT made no difference to average physical disability, however it is erroneously promoted as having a 30-40% 'recovery' rate.

    Only up to 16% of participants could be said to have responded in any way (by at least a minimal amount) to GET and CBT, and that's if we accept the methodology used, and the interpretation of the data, which are both demonstrably flawed.

    On average, all patients were left with severe disability, with minimal improvement (at best) at the end of the trial.

    Severely affected patients did not respond to psychological interventions in the PACE Trial's sister project, the FINE Trial.

    Did you know that up to 60% of ME patients are harmed by GET, as reported in patient surveys?

    I am just telling you this because you say that you are very concerned about the health of ME patients, for which I am grateful.
  7. Bob

    Bob

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    Add to this the worrying fact that so many labs are contaminated with XMRV, which risks lab workers' health, and risks contaminating vaccines. Add to this the multiple positive prostate cancer studies.
  8. Esther12

    Esther12 Senior Member

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    The way in which the results from PACE have been spun is, to me, a more worrying example of Bad Science than the XMRV debacle.

    With XMRV, we were always going to need independent validation. With PACE, the true believers are left to do whatever they want, and everyone else just has to take their word for it.
    ixchelkali and Sam Carter like this.
  9. gu3vara

    gu3vara Senior Member

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    I've been "forced" by the insurance company to do a program of GET and CBT for 4 months, they were the worst of my life and it disabled me even more until today. Anybody doing a study and claiming those two are beneficial for real cases of CFS (especially advanced ones like me) is (best case scenario) doing very bad science.

    Funny thing is they said in their reports that made significant progress in the 4 months, despite me telling them how wrong it was.
  10. Firestormm

    Firestormm Senior Member

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    Sorry to intrude but what the heck has the PACE Trial got to do with the subject matter of this Thread?

    Damned ridiculous.
    Sam Carter likes this.
  11. Bob

    Bob

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    Speaking as an ME patient, a heck of a lot in my opinion, Firestormm.

    Are you not bewildered by the amount of attention that the Lombardi paper has attracted, in terms of people wanting to expose 'bad science', compared with the total lack of interest that the PACE Trial has attracted from people who say they are interested in exposing 'bad science'. And yet the PACE Trial is a systematic abuse of the truth, and a hundred times worse than the single flaw that has been found in the Lombardi study.

    I find it incredible. I also find it insulting. And I am feeling increasingly irritated about it.

    I think I'm right as an ME patient to highlight this contradiction. And I will continue to do so, and to draw attention to the PACE Trial, whilst non-patients are posting with righteous 'anger' about the XMRV study, whilst they are sanguine, impassive, uncritical, or ignorant, in relation to the PACE Trial.
  12. Angela Kennedy

    Angela Kennedy *****

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    Thank you Bob. You are absolutely correct.
  13. Esther12

    Esther12 Senior Member

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    Yes... but...

    I don't know if it's fair of us to quiz anyone posting about XMRV on their view of PACE. Especially as understanding PACE would take a lot more work and effort than understanding the current state of XMRV research. It is a bit irritating when some people act all "I AM SCEPTICAL SCIENCE - YOU ARE MERE PATIENTS", but has no interest in looking critically and carefully at the poor quality of research which concerns us, but I don't think Lee was really doing that.

    I wish that more people with an interest in science and critical thinking would take the time to look through PACE with us, and listen to our concerns, but people are lazy. I am too. I don't think we have a right to expect that much from someone just because they make a few posts about XMRV here.

    (I am a bit knackered today and haven't been following this thread that closely, so can't be too confident about all the context though).
    Sam Carter likes this.
  14. ukxmrv

    ukxmrv Senior Member

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    It shows the selective bias of some of the non-ME people who come to this forum to comment critically on the recent XMRV developments and tend to have the same viewpoint. I've not said that very well. It's not their fault that the media has only been covering some areas - (and if it is the media that they are getting information on ME from)

    We have had few family members or friends join us here with a passion to discover if their loved ones have a HGRV. For some reason we seem to be attracting one sort of viewpoint and I don't know why.

    We would like them to care about other areas that need their "anger".

    (and this forum is open to public viewing so it's a good opportunity for we patients to put things into perspective and hopefully get more of these people interested in the medical travesty of PACE and the wider issues that ME patients feel their own anger and disappointment about)
  15. Bob

    Bob

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    Yes Esther, precisely... people are too lazy or not interested in finding out what really matters for ME patients... But that doesn't make it wrong to inform people.

    Lee expressed an interest in exposing 'bad science'. He said it made him angry, especially in relation to ME. And he seems to have a lot of energy. So I was just introducing him to an area of 'bad science' that I personally think is more important that banging on about a possible flaw in the XMRV study.

    So I was only gently encouraging someone who is interested in 'science', and who is angry at 'bad science', and who has an interest in the welfare of ME patients, to take an interest in other areas of ME research. I'd be grateful for any help we can get in exposing the PACE Trial.
    ixchelkali likes this.
  16. Bob

    Bob

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    There may be serious mistakes in what's left of the Science paper. But we don't know that. To say so is speculation.

    Even if there are further mistakes, XMRV is a real virus that infects human tissue and that contaminates many labs. And XMRV also infects prostate cancer patients, according to a number of studies.

    So I wouldn't call any research into this virus 'wasted money'.

    It has also bought a lot of new researchers into the field of ME. Lipkin and Alter, for example, had barely heard of ME before they became involved in XMRV, but now they are both enthusiastically following research avenues, with fresh research money.

    So your concerns are misplaced.



    On the question of hope and being 'misled'... Thank you for your caring but slightly patronising and patriarchal comments.

    I suppose the question is: "Is it better to have some false hope, than no hope?" And that's a question that can't be answered except by the individual affected.
    ixchelkali likes this.
  17. leela

    leela Slow But Hopeful

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    [This post is not directed at any on person. It is something I feel like saying.]

    I'd like to point out that failed trials or studies are not automatically bad science.
    They are part of the scientific process to study something objectively (we hope) and determine whether it pans out or not.

    In the case of XMRV it was not necessarily wasted time and money. It has brought to light the very srong likelihood that HGRVs or
    some human retrovirus is a major part of the immune disturbance in ME.

    I am really starting to get tired of the people taking XMRV as the axis of their argument against RVs or anything else, when a year ago it was determined that it was a family of retroviruses, not XMRV that was implicated. Further study to really nail down that theory was not ill-spent.

    Good science should always be willing to investigate, thoroughly assess, and unabashedly admit to a theory proving out or not.
    Societally we have looked upon these outcomes as failures or successes, but the only failure is when we fail to look at a potential problem or solution out of *fear* of failing, or *fear* of social and economic shunning. That is bad science: the unwillingness to look at an inconvenient, or perplexing, or uncertain data set.

    Science is absolutely no longer pure. So putting your faith 100% in science, and ignoring the political, financial, and corporate
    influences that are very real, is almost like believing in the Wizard of Oz.

    I have no answer for it all except to be willing to read between some lines, and pull back curtains wherever possible.
    ixchelkali, busybee and SOC like this.
  18. Bob

    Bob

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    Good points Leela.

    If a scientist honestly follows a lead, and carries out their work diligently, then even if their work ends up being proved incorrect, based on further knowledge, then it is not 'bad science'. It is just science in progress. Science learns from past mistakes as well as past successes.
  19. Lee

    Lee

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    Bob:
    "On the question of hope and being 'misled'" I was referring specifically to my friend, who is spitting-nails angry right now.

    leela:
    "In the case of XMRV it was not necessarily wasted time and money. It has brought to light the very srong likelihood that HGRVs or
    some human retrovirus is a major part of the immune disturbance in ME."

    Actually, given that we now know that they were using 5AZA without reporting it (until the Ottowa conference, in a slide, apparently) we don't know, and cant know, if any of the alleged HGRV results are real.

    That's why this is bad science. Not because it didn't work out - lots of good science doesn't work out. It's bad science because it was badly done and badly reported. If they were using 5AZA without telling anyone, and not doing proper controls, then it is possible, maybe likely, that much of the non-PCR results they have reported are simply an artifact of the 5AZA treatment. And they have admitted that they didn't think it was important to let us know about the 5AZA treatment, so we don't know, and we can't know.

    JM has shown with the 'blind' results that she cant repeat her own PCR results unless she knows what the answer 'should' be. We know that she has been unwilling to let anyone else have access to her experimental materials to make independent tests for contamination. We know that she failed to reveal a key experimental detail, the 5AZA treatment, this we do know can cause exactly the kind of artifacts that she is reporting as results, and that in the one place she revealed that usage, she did not do the key control, for those artifacts.

    Nothing she has done, it is now clear, can be trusted.

    At this point, given these issues, nothing that JM has done or reported is credible evidence for any virus, XMLV or HGRV or otherwise.

    BTW, I'm not commenting more on the PACE trial because I am not a clinician, and do not have the expertise to easily evaluate that work - and because it is completely irrelevant to the results of the alleged XMLV work. I am an (out of practice) molecular biologist and geneticist, and I do have enough expertise to easily and quickly understand these issues. What I see, each new emerging contaminant and changed label and changed interpretation and previously-unreported experimental detail, makes me really angry.
  20. Esther12

    Esther12 Senior Member

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    I get you, understand and agree...

    but... I remember being a uni at having people trying to educate me about whatever political/social topic they thought demanded my attention when I just wanted to act a little concerned about that stuff, and then spend most of my time dancing! If you hold people to too high a standard, it can easily feel like baracking, even if that's not how it's intended, especially as all three of us suddenly started chirping on about it in unison. There are plenty of topics more important than PACE which I've not taken the time to educate myself about because of my own indifference and laziness, so one must be understanding when others are the same.

    I can answer it for everyone, due to my remarkable mind (arrogance). False anything is always bad. False ideas ruin and distort everything. If a claim is not true, it is harmful.
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