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Dr Mikovits excellent reply to Science Journal Request for Retraction of XMRV paper

Discussion in 'XMRV Research and Replication Studies' started by Countrygirl, May 31, 2011.

  1. eric_s

    eric_s Senior Member

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    Joshua, you have to be aware that ME/CFS Forums is a special place. People there are not anti science at all, but they have a very strong opinion about what the situation is like and don't like people attacking that point of view. I prefer the atmosphere and culture of this forum here, even though there are pros and cons everywhere.

    Science should be different, as you said, but is it? I think that's exactly the problem. It looks more and more as if it's not at all a non-personal search for the truth, it's a power struggle, in the case of HGRV. I don't know the motives of the different players, but i can see that it's a fight. Look at the authors of the Levy study. Peterson and the Wisconsin institute seem to have personal issues with the WPI. Then there's the other paper by Coffin. We all know the things he said and did, "leave XMRV behind" etc. And then you have Ruscetti, who probably would beg to differ and who works for the same NCI as Coffin. And on the day of publication, the NCI says on their website XMRV in ME/CFS stems from contamination. And Alter said his sequences can't be explained by Coffin's hypothesis. This is a fight, and we should be aware of it. Because it matters when we try to think about what we should do and who our friends are. If we are naive, it might be dangerous. We should not be paranoid, but not naive either.

    We have never in history had our fair share of attention as far as science is concerned. What we get in terms of funding is peanuts, compared to other groups. If there then is a group like the WPI, whos mission it is to help us and they report having potentially found a treatable cause for ME/CFS i think it's normal people to some degree become their fans. But i agree, we should not forget to stay objective, nevertheless.

    And my picture of the football fans was actually not about comparing the scientific process with a football game. Maybe i was not very clear. What i wanted to say is that you have people who are, understanably, very much emotionally involved. XMRV could make all the difference for us. Now we have gotten a beating and it looks to a good part unjust. In such a moment one has to be aware of the feelings of people and should be careful what one says and how one acts on an ME/CFS board. I'm all for objectivity, but this is a ME/CFS board and not a general science board. I'd love to have more scientists here, but i think on a ME/CFS board you should respect the feelings of people with ME/CFS.
     
  2. WillowJ

    WillowJ Senior Member

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    the other thing people should realize when coming here in a week like this, is that different points are made when discussing:

    A) the general merits of the case of XMRV/MLVs/HGRVs

    than when discussing

    B) the reason why the Lombardi paper should not be retracted and why study of XMRV/MLVs/HGRVs should not be abandoned now

    Those are very different topics, and to use discussion of (B) to inform yourself about a population's view of (A) is misleading
     
  3. Angela Kennedy

    Angela Kennedy *****

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    Those two factors are the biggies. The mean, recalcitrant patient refrain beloved by, for example, Simon Wessely (the latest as we've just seen in Nature) and swallowed a little too uncritically by Joshua here, is irrelevant. Joshua, calling people anti-science for critically engaging with claims to scientific authority is a common and depressing ad hominem this community faces on a regular basis. You are not the first person to make what are actually rather fatuous comments like the ones below:

    You have completely misrepresented that thread and the concerns of some very sophisticated observers of what Khaly Castle has called the 'three-ringed circus' of XMRV 'science'. It might be you are just ignorant of the complexity of this subject, and have inappropriately generalised after fixating on a few comments you disagreed with. To call people 'anti-science' on the basis of a few comments on that thread is wholly inaccurate. To make your 'mark my words' claim is just silly- you're not some seasoned observer of similar science and communities to be able to make that prediction- because the situation facing the ME/CFS community has no real precedence elsewhere, and where there are similarities (AIDS, for example) patient bolshiness worked!

    This might be fervent ignorance of the complexities of the situation facing the community (the constant attacks on their integrity, the psychogenic dismissal and its material and social effects, the bad science inherent in psychogenic explanations given authority by government, the current bad science inherent in the claims that XMRV is a dead duck and should not be allowed to play out the way other scientific questions are, based on badly done 'negative' studies and unwise 'nothing to see here' comments), OR, you are deliberately trying to demoralise people, or strawman the ME/CFS forums members. It would not be the first time this was attempted.

    If it's the first, you really do need to wise up, because your current position is untenable in the face of the evidence. You might have been reading too much of ERV and the Bad science forums, and therefore have a narrow view of what's going on (too narrow).
     
  4. As a "scientist" (retired vet) and keen to study all microbes, I have grown Mycoplasma in the lab and wrote my Masters thesis on the subject. The WPI studies on XMRV appear to be genuine with no fraud. So why all the negativity? There are obviously many anti-XMRV vested interests involved to muddy the waters. Just ignore all the non-replication, cheap & nasty, quick & dirty, negative studies. Mikovits and her crew spent 8 months tweaking their techniques, honing & polishing them, and this is a work still in progress. They still won't commit themselves to claiming that XMRV is the cause of ME, as there are some more hurdles before Koch's Postulates can be proven. But what else can it be? Given that the cause of ME has been known to be a retrovirus for the past 25 years.
     
  5. Publishing an "expression of concern" by "Science" has simply thrown egg all over its own face. The original paper by Lombardi et al was very carefully vetted by Science, who insisted on extra work to prove lack of contamination. No fraud was involved. So WHY the request for retraction? We have all known that ME(CFS) is caused by a retrovirus since about 1985 when Dr Paul Cheney showed MRI scans to a specialist who in return showed him scans from AIDS patients - they showed the same lesions. Then Elaine DeFreitas found a retrovirus in her ME patients in about 1991; her work was suppressed when the CDC couldn't duplicate it (using different methods). The WPI team may well have the right answer. So exactly WHY does this huge anti-XMRV movement exist? Surely true scientists would be looking to find the real facts, and not trying to stymie the work in progress? The non-replication negative papers are worthless and the suggestion that XMRV could be either a contaminant OR a new virus generated in the lab, is simply speculation, no more. Science editor Mr Alberts does himself no favours in presenting his "expression of concern", which is so premature as to question his integrity as a scientist, and implies that he has been "leant on" from above.
     
  6. eric_s

    eric_s Senior Member

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    Good to hear from someone who has an idea, thanks. What i always find hard to make sense of is that Elaine DeFreitas reported finding another type of retrovirus (no gammaretrovirus). So i guess that was not the same that we are looking at now. I never know what to make of her story.
     
  7. Bob

    Bob

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    I engaged with you very fairly and respectfully RedRuth, but you seemed more interested in your own agenda, rather than learning about the perspectives and experiences of CFS patients.
    If you had seriously engaged with the patients in this forum, because you wanted to learn about our perspectives, then you would have encountered a lot of good will, and people would have given you a lot of time.
     
  8. Bob

    Bob

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    Thanks LJS.

    I've just looked through that paper and there's absolutely no mention of the WPI's newly registered sequences at all.

    Knox et al. only analyse the WPI's original sequences.

    So everything that you have said, above, is incorrect and misleading, as far as I can tell.


    Here are the newly published WPI gene sequences, and they are not mentioned in the recently published Science paper by Knox et al.:
    http://forums.phoenixrising.me/showthread.php?11714-New-WPI-and-CDC-XMRV-sequences-in-genbank
    The Knox paper is based on old knowledge, and so it is already out of date.
     
  9. Bob

    Bob

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  10. eric_s

    eric_s Senior Member

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    Hi Alex. Thanks again. I did not have time to go back to this post to read it before now, because i was really drowned with things i have to do in the last couple of days.

    Of course i can't know how to overcome all of these problems, but i guess the way is to think about it, get to a best guess and then try. Adapt what you are doing, according to what seems to work best and keep doing it, always keep doing it. Not one person, but the community as a whole. I think every country is a situation on it's own and needs to find it's own recipe that works. But they should always be in contact and share their ideas and experiences. In Europe there is EMEA and i think that's the right approach, but i don't know how active they are. I think EMEA is a very important platform and the organisations represented there (i hope it will be all of them, sooner or later) should find a way to be in contact regularily and in an effective way.

    To what you said in 1., i think ME/CFS organisations are key. If doctors and politicians/officials are often not well informed, the push can only come from our own organisations. The question is how to make these people (doctors, politicians, officials) listen and act. I think founding organisations for health care professionals with experience with ME/CFS, like Liga SFC in Catalonia did, is a very smart idea and should be copied on the national and probably also on the European level.

    I think the same applies to 2. In a group we can find the strength to refuse that sort of treament, where it exists, and we have the power to demand change.

    Regarding 3., if some doctors or officials really try to keep people away from groups that's a problem. I guess here also it must be the groups who have to reach out and try to get those people interested nevertheless. How to do that is of course not so easy to tell. I guess here again, each group must find the way that works in their country at that given time, but the more they talk to each other, the more i think they are likely to find a successful way.

    Regarding poor countries, i guess we should focus on our part of the world (North America, Europe and Austraila/New Zealand). Not that the others don't matter, but i guess it has to be us who pull the cart out of the dirt and then the situation will improve for people in those countries as well. Probably it would be very difficult to reach them and they would not be able to do much. The rich people in those countries will probably donate to charities in richer countries anyway, so they have a way of participating. I think we have enough people and resources in our parts of the world, so we should focus here. And if we have success, it will be a success for everyone anywhere on the planet.

    I think all in all, it's a matter of growing the organisations (more members, more funds), connecting them and making sure they have the right leadership (this will be up to the members to decide, but you can only vote if you actually are a member, so one more reason to join).
     

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