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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. Wonko

    Wonko Senior Member

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    Whats the point! Your "clearly" just rearranging what I post in your head so it matches your own version of reality. Even to include correcting my obviously flawed knowledge of my own motivation.
  2. Kina

    Kina Moderation Team Lead

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    Jace, you stated in this post, "I believe I once, out of some 700 posts, made a mistake". Well make that three times because you just attributed statements I made to "Tristan" who actually quoted me. I was also actually referring to Pumpkin/V99 in my comments regarding the qualifications she possesses over the qualifications Lipkin possesses, not you. It's not meant to be an insult in any manner. It's a fact that Lipkin is qualified over Pumpkin/V99. My FIL used to be a heart surgeon, I have read a few books on the heart and have been lucky enough to watch an actual transplant. This tiny iota of experience never gave me the qualifications to tell my FIL that he didn't know what he was doing or to tell him how to do the surgery properly. My point is that Lipkin has the expertise over some anonymous poster on the internet. Not an insult at all.

    I also wasn't making any judgements about you. How could I because I don't know you except from what I read on this forum. If I were to make a judgement, it would be that you seem like a very nice person. What I said came from the content of your first post and the comments and the letter were taken from another persons words. So really it's not about you at all.

    Science is an ongoing process but demanding it to halt makes it a non process. Not a good thing. The view seems to be this study is flawed but do we know what assays each group is going to employ. The view seems to be that these researchers don't know what they are doing. Rather than demanding the research to stop, why not ask the researchers involved what they will be genetically targeting. Lo didn't find XMRV but something else, is Lo not participating as part of the Lipkin research. This is a chance for Lo to replicate the findings, is it not?

    Okay, I have totally lost my train of thought.

    Some people think the letter is a fine idea, others don't. People will do what they want to do.
    Lily, Lou, Jenny and 1 other person like this.
  3. barbc56

    barbc56 Senior Member

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    Quite true. While the other studies such as PACE and the Lightning Process are seriously flawed, they are used as a strawman, ad nauseum, and really have nothing to do with the Lipkin study.

    Think I will also send Dr. Lipkin a thank you. Maybe if we do that we can at least counter some of the unprofessional and ridiculous assumptions where people are being spoonfed science nonsense, which is spilling over from other places onto this forum

    Yes the letter referred to by the OP, is akin to a tantrum. Good, going, guys. Great PR for patients. Geese, no wonder people think we are crazy.

    IMHO :>)

    Moderator Note: Barb, please take a moment to consider the effect it has on people when you accuse them of 'ridiculous assumptions', claim that what they are saying is 'nonsense', say that the letter they are posting is 'akin to a tantrum', and suggest that their behaviour is responsible for people 'thinking we are crazy'. Do you not think that this kind of inflammatory language is likely to make the people you are accusing more angry rather than less? The language in this post could reasonably be seen as 'akin to a tantrum' itself. Please stick to evidence and argument and try to avoid emotive and inflammatory language.
    Jenny, wdb and Tristen like this.
  4. Angela Kennedy

    Angela Kennedy *****

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    Sadly your 'case' fails on a number of points:

    1. This forum is not representative of the community per se. Different forums often have different ratios on patient (and supporter) attitudes. You cannot substantiate your assertion based on this forum.

    2. In any case, you have no figures to back up your assertions about what people think. You are merely asserting without evidence. You cannot substantiate your claims, and your appeal to popularity fails.

    3. The title of the thread is not indicative of the breadth of possibilities enabled by this proposed strategy. This has already been demonstrated on this thread. Writing this letter - or similar letters, does not make people naive in making 'demands'. In the real world, demands are made that may not be feasible, NOT because they are implausible or incorrect, but because of power relations. Nevertheless, making strong objections and/or 'demands' is done by many parties on a regular basis. Objecting to this study will highlight its problems at the very least, which is a legitimate aim.

    4. You are admitting to being openly rude. You criticise me for NOT being rude, for NOT breaking forums rules (which I note you are unable to cite in substantiation of you previous accusations, by the way!). You should recuse yourself from this thread because you are being blatantly distruptive. Your intent is clearly to attack those who don't agree with you, instead of engaging in reasonable argument! Clearly forum etiquette - or even forum rules - is the last thing on your mind.

    I suspect you think you can get away with this - moderators are not around much at the moment, and there is often terrible inconsistency in how moderating is done, sadly - but your arguments about forum etiquette are ludicrous in light of this latest blatant trumpeting of your lack of respect for forum rules, let alone etiquette!

    Moderator note: My apologies for the delay in moderating this thread. We are undergoing some further structural changes in relation to moderation at the moment, but this should not be seen as an excuse for members to flout the rules. Please continue to report posts which breach forum rules and we will deal with them as soon as we can.

    Arguments about forum etiquette are not appropriate topics to bring into general forum threads: PLEASE report breaches of the rules to the moderators, refrain from enaging in argument with the offenders and refrain from criticising the moderation within the thread; it is completely counter-productive and unedifying, it creates extra work for the moderators, delaying the moderation of the original offence, and muddies the waters as to who is originally responsible for breaching the rules. Do not react in the thread - report posts that breach the rules, leave the moderators to do their job, and try to stick to the topic under discussion - please!
    Wildcat and jace like this.
  5. Angela Kennedy

    Angela Kennedy *****

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    No. I wasn't. I was addressing a point you made that was flawed. That's all.
    jace likes this.
  6. Angela Kennedy

    Angela Kennedy *****

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    Ah - the old blaming patients for acting 'crazy'. I wondered when that was going to raise it's ugly head! You got to love the 'friendly fire' rained down on sufferers by ostensible community members. That's such an old canard. It's such an insult - but look! There is it again.

    Nice one Barb. How would you like it if YOUR behaviour was constructed as appearing mentally pathological, because your beliefs are problematic and your opinion contested? If someone said the behaviour of people like YOU were what was keeping this community in the grip of psychiatric abuse? Because that's what you are doing to others here.

    PACE is NOT a straw-man - it is ENTIRELY relevant to problems in science, AS IS the race to close the door on HGRV research, as is the Lightning Process trials.

    I'm sorry if that discomfits you.

    I won't say I think your assumptions and assertions are ridiculous, because that would be breaking forum rules. Oh look! You just did that.
    Wildcat and jace like this.
  7. barbc56

    barbc56 Senior Member

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    I don't "discomfits" easily. :>)

    If you feel my post is inappropriate, then hit the "report post" button.
  8. alex3619

    alex3619 Senior Member

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    Just for the record, while I do not support a letter asking to shut down the Lipkin HGRV study, I do support the idea of a letter that addresses concerns we have as patients in a clear and logical fashion. With that reply in the public domain a lot of patient concern could be alleviated, and we would have a better idea of how to proceed next. Bye, Alex
    jace, taniaaust1, Wonko and 1 other person like this.
  9. eric_s

    eric_s Senior Member

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    I also think it's a very good thing that Dr. Lipkin has now entered the ME/CFS field. No matter wheter there will be problems with the Lipkin multi lab study or not, i don't think the focus needs to be only there. This study is impossible for us or the Mikovits and Lo labs to control (i don't even know if there will be a Mikovits lab participating in that study, i have not followed the recent developments in that story). But what they can do, if they are right, is to prove to the world these viruses are really there. What i would do is something like this:

    -Get a third party doctor or ME/CFS group to "supply" patients and healthy controls
    -Get a third party phlebotomy service to draw blood and send it to the lab, blinded
    -Have a notary or a couple of them oversee and protocol the entire operation and store the codes
    -Film everything and also have journalists who are interested in the story be present at every stage and report about it
    -If they are able to correctly tell patients from controls, let the world know
  10. Tristen

    Tristen Senior Member

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    Yea, I like the letter idea too.

    Jace was being respectful in asking how we felt about his posted letter. And personally, I think it would be just fine if the aggressive lines were to be removed. But as it is, it appears as more undeserved harassment of one our best researchers. Lipkin has never done a single thing to deserve that kind of hostility. Why not attempt respectful and responsible dialogue with this man who has thus far only shown that he is fully committed to helping us solve this dilemma. Most of us do have questions about where he goes from here with the RV studies, but we need to ask those questions more responsibly.

    Btw, The "like" function is a pretty cool addition for looking at census of opinions. Wonko takes the prize this time.
    ixchelkali, wdb and barbc56 like this.
  11. ixchelkali

    ixchelkali Senior Member

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    I didn't think it was you she was talking about. I thought she was referring to the person on the other forum who she thinks wrote the letter.



    I don't think it's customary for scientists to release detailed protocols until their study is published.

    Can you share with us the source of your statement that Ruscetti isn't involved in the study?


    Which is why demanding that this study not be conducted doesn't strike me as a good idea. Science is an ongoing process, and this study is another step in that process. I don't think we further the process by stopping studies before they're conducted; I think it's better to let the science go on, and after the results are published, to make informed analysis of the methodology and conclusions.
  12. Angela Kennedy

    Angela Kennedy *****

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    I think this is an understandable and reasonable position to hold. However, when neutral 'science' is not actually prevailing but politics, bad science (by which I mean flawed and possibly not done in good faith, and there are enough reasons to think this is the case with the Lipkin study), and science which could ruin actual progress in that scientific field because it's so flawed (again, enough reasons to think so with this study), it would be remiss to keep silence and not raise reasonable objections. This letter IS based on reasonable objections.

    This is not to say people SHOULD use it, only that they MIGHT, and it is still a reasonable proposition.

    PACE and the LP both claim to be the kind of science that should be allowed to 'proceed' in the name of science, after all.

    I should also say - the attacks on the actual person who wrote this letter? Sheer ad hominem. Not cool.
    Wildcat and jace like this.
  13. Angela Kennedy

    Angela Kennedy *****

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    I certainly did.

    But that does not remove your responsibility to refrain from blatantly inappropriate posts in the first place!
    Wildcat, justinreilly and jace like this.
  14. Angela Kennedy

    Angela Kennedy *****

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    Problems with believing the 'like' facility is an adequate reflection of 'census' of opinion is:

    1. The numbers are consistently too small to reflect anything much, except some singular 'tag-teaming' going on perhaps on this particular thread at most.

    2. People 'liking' a post does not make it right - that is an appeal to popularity that fails, because some of these slightly 'liked' posts actually break forum rules! It means people are voting with bad faith and vindictiveness. That's not good!

    3. People here can do what they like - there is no law saying they have to follow what the loudest or most aggressive forum members say. 'Consensus' is therefore irrelevant on people's decisions whether or not to adopt this letter in whatever form they choose.

    Plus - I disagree about the letter being harassment. It's legitimate objection. 'Harassment' claims just do not hold water in this way. They are redolent of Wessely's campaign in the summer.
    Wildcat, jace and (deleted user) like this.
  15. snowathlete

    snowathlete

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    Regarding your first point, its true that this forum doesnt represent everyone with the illness, but whenever you have a large group you have to take a sample. Its a large enough sample to draw such conclusions as i did, which was a statement about majority. i.e. greater than 50%

    Point 2, well, evidence is more than statistics my dear - I work (or did until recently) in the area of evidence. So im afraid your just wrong on that one.

    point 3, you hold a strange view here. The topic has gone off-topic, but the core is that the OP wanted to DEMAND something, thats in the title and its twice in his/her letter.

    I think you know your point is weak too, because you requalify it at the end, making the subject, 'Objecting' which of course is far more reasonable and likely to have a positive outcome. As another poster alludes to, demanding is a poor tactic, however much it is used.

    point 4, yes i was rude. i admited it, but i was pointing out that i was by no means the first in the topic to be rude. i was critising you for being rude, not for NOT being rude. Your are obviously reading what you want to read as another poster also mentioned.

    I am going to take one piece of advise though, i am going to recuse myself from this topic. Not because i feel i am being disruptive, i simply dont agree with that. What has made this topic disruptive, is that the OP asked for our thoughts, but what he actually meant was, reply if you agree with me. Well, thats hardly my fault.
    This topic is therefore a waste of time. You and others, dont want to hear opposing views, whether they are given politely as i did at first, or more rudely as i did later.

    The reasuring thing is that you will just be wasting your time with the letter in its current form, and no one will take you seriously, so you can do little damage.

    My final word will be to highlight what Tristen says here. Exactly right, and i can only hope you will listen to him, if not me.
  16. Angela Kennedy

    Angela Kennedy *****

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    Ok,

    It's clear that the most fundamental difference between me and you is that you have an early retreat to committment. You believe what you believe, and evidence and logic will not sway you. By a metaphorical contemptuous wave of your hand, you believe you can dismiss the thorny problem of substantiation of wilder claims that you make. You truly believe you can make unsubstantiated assertions, and they are equal to actual evidence and logic! It's absurdity to the extreme.

    This irrational retreat to committment is also very clear from your belief that, because I have constructed an argument in suitablly tentative terms, that it shows a sign of 'weakness'. Your bull-headedness precludes rational debate on this topic, sadly. it's impossible to have a rational debate with such an idealogue, especially one who resorts to patronising addresses such as 'my dear' to compensate for their lack of rational argument with empirical adequacy.

    Clearly I was NOT being rude - you have no evidence to back up that claim- especially as you resorted to rudeness to coover up your lack of actual coherent and empirically adequate argument extremely quickly, in the way you treated Jace. It was a STARK difference to my comments, and you know that - hence the 'skirting around' comment.

    But hey- 'well done' for getting past the moderators and sucessfully breaking the forum rules!
    Wildcat and jace like this.
  17. taniaaust1

    taniaaust1 Senior Member

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    thanks for sharing .. and thou we all dont know what was asked and what was said. I completely understand the comment " I will not post the emails here as I don't have permission to repost and often the words of researchers like Lipkin get so massively twisted that the meaning gets lost. "

    I also understand the worry some have too.. its all cause we have been all screwed over just too many times before by people.

    anyway. Thank you Kina.
    jace likes this.
  18. taniaaust1

    taniaaust1 Senior Member

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    I do like the idea that someone mailed the researcher to ask things and then came back and reassured people here about his openness to her questions etc etc. . Im greatful to her for that.
    .....

    But I also want to say to everyone here.. please also consider the time etc we are taking away from our researchers who I think most of us would like them to be fully focused on their research.. rather then having to act like secretaries and doing emails to the patient population. I'd hate to think just how many emails our researchers get from us. It must take a lot of their time and energy to be replying to everyone. I wonder just how much time Lipkin ends up having to do that.

    I soo want them to be able to get on with and really be focused on their work without stress. The more time and energy they have, the faster some studies will procede.

    Maybe the patient group should nominate spokespeople for everyone, those people most trust, to contact a researcher and ask "nicely".. whenever we as a group have questions.
    justinreilly and Jenny like this.
  19. taniaaust1

    taniaaust1 Senior Member

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    I see many want to send a thank you to Lipkin to express appreciation for being in research to try to help us. etc
    Instead of many emails saying thank you flooding his email and hence taking up his time and making more work for him.. maybe it would be better for someone to do one of those group ecards in which many from the ME community can individaully sign and write their own supportive message and have it sent via just one email.

    Does anyone know of a site where there are those? (I signed a group one some time back but have forgotten where it came from). Does anyone want to arrange that? (its probably a good time for something like that to be sent).

    :) .. Ive been thinking that same.
  20. markmc20001

    markmc20001 Guest

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    The general intent of message I agree with and will send off what is quoted below. It is important "to go on record" that looking for a clone does not equal looking for a real virus. That part of the science I understand without question.

    I think everybody got derailed by the beginning of the post. Demanding and haulting research, Lipkin certainly won't stop the program. However, at least maybe he will re-consider the study design.

    I added this to mine:

    I'm concerned about the upcoming study on XMRV by Dr Lipkin. PLease consider the statement below from the ME/CFS patient community as you move forward with further studies on XMRV or HGRV's.

    jace likes this.

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