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Demand a permanent halt to the multi lab Lipkin study

Discussion in 'Action Alerts and Advocacy' started by jace, Nov 9, 2011.

  1. Frickly

    Frickly Senior Member

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    Here is a link to group cards. The first one is free and easy to do. I have already used my free one but will certainly sign it if someone sets it up? I agree that we should not bombard Dr. Lipkin with emails but would like him to know that his work is appreciated. http://www.groupcard.com/ecards/thank_you


     
  2. Tristen

    Tristen Senior Member

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    My reference to the "likes" was more about general opinion rather than any kind of accurate poll, which is what I thought Jace was asking for. Maybe a poll isn't such a bad idea.

    I personally would perceive a letter demanding that I stop what I am doing, without having had received any prior respectful dialogue on the subject, as harassment. Maybe obtrusive would be a better word.

    Some of our docs have already shared their views on how detrimental the aggressive actions have been to our community. I was delighted to see those kinds of actions diminish and am hopeful that will continue. I see this letter as being too aggressive, period. I will also add that I see no comparison between W's manipulative whining, and the use of the word harassment in this context.

    Thanks, Love the group card idea. Peace out.
     
    wdb, Jenny and Glynis Steele like this.
  3. Mark

    Mark Acting CEO

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    Moderator Note:

    The arguments in this thread have got personal and there are multiple breaches of forum rules above on both sides of this argument. Regrettably I do not have time to deal with all the offences at this time by reviewing and editing every argumentative post, but I have tried to highlight the most obvious ones and I've removed some of the most inflammatory language.

    Since we are short-staffed on the moderation team at present, it is not my intention to spend the limited time I have available for moderation by going through argumentative threads in detail and deleting all inflammatory and rule-breaching references. Instead, when an argument like this one breaks out, I will highlight the worst behaviour and I will expect a change in behaviour from those whose posts I have highlighted.

    If those changes in behaviour are not forthcoming, then members who persist in breaching the rules will be suspended or banned. My focus will be on identifying the individuals who persistently inflame situations, cause disharmony, disrupt the community spirit, and wilfully breach the rules, and such individuals will be removed from the forums so that those who wish to debate in a civil manner can do so without interference.

    Some members on this thread have noted the shortfall in numbers of moderators at present, and of course we are working on that situation. Members should be under no illusion that this situation means that they can get away with behaviour that has been dealt with more swiftly in the recent past. You may have a little more rope at the moment, but I strongly advise you not to use it to hang yourselves.

    Please stick to the topic under discussion, and express your points as calmly, politely, respectfully and reasonably as you can. Further inflammatory posts in this thread by members who have already been warned about their posts may well lead to suspension from the forums.
     
    beaker, wdb, ixchelkali and 5 others like this.
  4. Mark

    Mark Acting CEO

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    Since I've just spent rather more time than I would have wished reading through this thread, I'll add a few observations that occurred to me along the way, and hope that these points may help to frame a more respectful discussion.

    1. It has been clarified that there are two separate Lipkin studies under way: the 'final word on XMRV' and a more general search for pathogens in people with ME/CFS. It seems important to make a clear distinction between the two studies - although we don't even know (as far as I am aware) whether the same cohorts are to be used for both. The latter study is a very exciting opportunity for ME/CFS research, and long overdue - it should be exactly what we want to see happening, led by one of the world's top pathogen-hunters. But...until we see the results of that research, I'll reserve my judgment on whether the scepticism of some may in the end prove justified. Regrettably, the reality is that the assumption that Dr Lipkin is 'on our side' in this hunt is a theory that will need evidence if it is to be proven to all.

    2. Many questions have been raised about the first study in particular, and some assertions made about who will and who will not be involved in the XMRV study, but there does not appear to be much in the way of reliable, referenced information about those matters. Since at least one member has a good channel of communication with Dr Lipkin, it would be highly desirable if authoritative answers could be obtained to some of the questions raised - most particularly, who will and who will not be participating.

    3. The member who claims to have had good email communication with Dr Lipkin, asking questions respectfully and receiving answers promptly, highlights a couple of key issues about effective communication. I think it is clearly true that respectful communication and the asking of questions can be a much more effective approach to establishing a channel of communication than the angry issuing of demands. However, it is most unfortunate if the answers obtained cannot be made public, because other members have rightly pointed out that there is no possibility of rationally engaging with claims to privileged information and appeals to the authority of that hidden information, and also because this situation means that efforts in asking questions are duplicated, and those whose communication is deemed insufficiently respectful are left in the dark, where their doubts and fears can multiply. More openness and transparency can solve many unnecessary problems of misunderstanding, so it would be great if the member who is in contact with Dr Lipkin could ask his permission to post the information obtained here, and to thereby establish an effective channel of communication with the patient community on Phoenix Rising and beyond. Even better, Dr Lipkin could even join PR and answer patients' questions directly here - perhaps that would save everyone a lot of time duplicating emails. :D

    4. Regarding 'Demands'. I half-agree with both sides of this particular argument. Actually, demands do sometimes have a legitimate place in political discourse, and they are not uncommon, nor are they necessarily a mere childish tantrum. However: for a 'demand' to be an effective or appropriate form of language - a terminology that will be treated with respect - it necessarily must be backed by some kind of power or an implied sanction that will be applied if the demand is not met. Thus the typical political groups that make demands are organised mass movements - united groups of workers or protesters who refuse to back down from their strike or protest until their demands are met - or groups using force or other leverage (such as terrorists holding hostages, or heavily-armed nations threatening weaker ones). We do not fit either of these patterns, and therefore it is not a form of language that is likely to be taken seriously in our context.

    5. Finally, regarding "stopping the study". I think that in this whole debate, there are a few unstated realities that are fairly clear to everyone. I think that everyone, realistically, knows the following to be true: (a) that the study will go ahead as planned regardless of what letter-writers say, (b) that Dr Mikovits will not be involved, (c) that all participants in the study will almost certainly fail to find any XMRV in patients or controls, and (d) that this will not change the opinions of anyone who still believes in Dr Mikovits and the original XMRV findings. The situation we have come to now, it appears, is that: the only person (Dr Mikovits) who claims to know how to reliably find XMRV in patient samples will not be participating in the 'final word' study; Dr Mikovits' claims will not now be properly tested under externally-managed blinded conditions; the detailed truth of exactly what the original Lombardi study did and did not find, and how any alleged contamination may have occurred, will not be fully investigated; and therefore the doors will be left open for this controversy to roll on and on. All that will be achieved in the end is to completely isolate those who retain an interest in the role of HGRVs in ME/CFS, and to place them firmly outside the mainstream scientific agenda. I have stated repeatedly throughout this controversy that the argument will only be settled if and when the entirety of Lombardi et al's findings are investigated and explained, clearly and publicly, including a detailed understanding of how any contamination may have occurred, and/or if and when the combination of an externally blinded study of Dr Mikovits' testing (which I argued for 2 years ago and which is clearly not now going to happen) and admission of error by Dr Mikovits satisfies everyone that the original findings were false. These always were the only ways to end this debate once and for all, and the latter in particular was a far simpler, more rational and cheaper solution than the approach that the scientific world has taken, but human and political factors prevent science from proceeding in such a rational and logical fashion, and I personally think that's disgraceful. In any case, anybody who thinks that Lipkin's study, without Mikovits' involvement, can 'end the debate once and for all' is deluding themselves. The problem remains the same: any number of people saying they are unable to find something does not conclusively prove anything about the one person (OK...I'm ignoring for now the likes of Hanson, Bieger, IrsiCaixa and the prostate cancer researchers) who says she can. So the bottom line: the study will go ahead, but without Dr Mikovits it cannot put an end to the controversy - all it can achieve is to effectively marginalise one side of the argument. Unless someone else does find XMRV, of course...I suppose anything's possible...
     
    jace, currer, justinreilly and 5 others like this.
  5. markmc20001

    markmc20001 Guest

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    Thanks for articulating that. I agree 110%.

    Frustrating how a life threatening issue can not be decided scientifically and with more certainty like you describe.
     
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think this is a fantastic idea!!
     
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Have we asked Lipkin what his study design is now and why?

    It seems to me, not knowing much about the science, that this should all be rethought since
    - Dr. Judy won't be involved (and Lipkin himself said this was necessary, if i remember correctly, in his recent Microbe Hunting paper),
    - Dr. M isn't claiming XMRV proper is at issue anymore and
    - Ruscetti may not be involved (does anyone have a source for this last one?).

    My other concerns/questions (as a layperson):
    - Shouldn't we wait until the full sequencing of the HGRVs has been released by Dr. M or WPI?
    - Once these HGRVs are sequenced fully, doesn't everyone need time to develop and fine-tune their tests for the specific HGRVs found?
    - Do Dr. M, WPI & Ruscetti need more time to figure out what went wrong in the BWG study and tweek their tests?
    - Shouldn't we wait for Dr. M to settle down somewhere and get her tests going with high accuracy and include her?

    my two cents on the funding is that though this money (at least the majority) probably won't get 'reinvested' in other ME research, I still, out of respect for our country, don't want public money to be spent in an inefficient way.

    Additionally, going ahead and spending this on a half-baked study (if this indeed is one) will probably be very detrimental (to understate) to any future valid HGRV research since "they" will say "we've already poured millions down that rathole just to satisfy patients and we're not going to waste any more" as Gallo and others are already saying.
     
    jace likes this.
  8. markmc20001

    markmc20001 Guest

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    no.no.no.no Justin. What you said would be too fair and make to much sense!:thumbsup: Science doesn't work that way with chronic fatigue.:eek: There's an elephant in the laboratory room!

    I think all the science was settled once and for all with that last "XMRV is Dead" press release Blitzkrieg.
     
    justinreilly likes this.
  9. markmc20001

    markmc20001 Guest

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    no.no.no.no Justin. What you said would be too fair and make to much sense!:thumbsup: Science doesn't work that way with chronic fatigue.:eek: There's an elephant in the laboratory room!

    I think all the science was settled once and for all with that last media press release Blitzkrieg.
     
    justinreilly likes this.

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