Demand a permanent halt to the multi lab Lipkin study

[jace]

If I was privy to confidential information I would not bring my privilege into the public discussion. It's like saying "I know something you don't know", a song often heard in the primary school playground. If you can't say, don't say.

 

[Undisclosed]

Jace -- a direct line consisted of me finding a publicly posted email address for Lipkin. I wrote him a very respectful letter with no demands. I asked him a few questions which were pertinent to me. I did not do it anonymously either. Rather than sending a demand orginated by an anonymous person (you say it was posted by Pumpkin on the mecfsforums who used to go under the username V99 -- I looked at that post and it seems V99 wrote it judging by her statements) I chose to go straight to the source of the research which makes much more sense to me. The fact that he bothered to spend time during his evening to write back to a person who he does not know shows he does have concern for the patient population.

The letter posted by you seems to be saying Lipkin is incompetent and has no clue about study design and how to use assays. This man is an extremely competent researcher, obviously understands how to do research, and has much experience with these assays. So what does one do, follow the lead of a patient who often posts erroneous information, whose only research consists of googling, who has never done a research study or performed any sort of PCR or related test, who has repeated ad nauseum that all negative studies are flawed. Or do we put our trust in a researcher who has the capability of finding answers with years of experience. I choose to follow the research and the researchers.

There is nothing wrong with sending letters and asking questions. The way it is done perhaps is important.

Kina.

 

[Frickly]

Never thought I would see a day when patients were actually petitioning for research to stop. This makes no sense.

 

[Tristen]

Kina, Lipkin has two studies. One is on HGRV and is funded by NIH. The other is on all possible pathogens. I think the second one involves CFI.

Tina

Being involved in both studies, I know this to be true. There is much more involved than just xmrv/hgrv studies and they are very much to our advantage. Sending demanding emails about these studies is detrimental to our cause.

Respectful and responsible communique asking for clarification of ones concerns is fine, but I vote no to these kinds of hostile letters.

 

[Angela Kennedy]

Never thought I would see a day when patients were actually petitioning for research to stop. This makes no sense.

Er - the PACE trial?

Ester Crawley's Lightning Process for children trial?

 

[Angela Kennedy]

Obviously, no one is forcing anyone to do anything. We all have freedom of action here. If you do think this is a worthwhile shot across the bows, as I do, then rewording or using your own letter is a better thing to do than just copying and pasting. We all have our own opinions on this, and just about any other matter.

I did not just cut and paste, but added some of my own stuff. Every advocacy initiative comes from an original source, and then is spread by others.

Lipkin was touted as being famously a de-discoverer. While I have no arguments with other lines of research, this Lipkin study has been characterised as the "last word" on HGRV's in ME, despite that they will be looking for (it seems from what we know) only the artificial VP-62, using assays aligned to that clone, as has been the case by the participating labs so far.

The concept of a Last Word study, only two years in to this latest round of research into retroviruses in ME, should be examined carefully. Some will say it should be rejected and I am one. I don't see how any single study, at this point, can have the power to say yea or nay when most hypotheses take a range of different tests, including clinical trials and several more years, to prove or disprove.

I am not so gullible to believe we can 'demand' anything, and actually get it. We are not in a position to make the decisions about research being done or not, or to lay down the law as to how it is carried out. But our concerns might alter things a little, and just letting them know that we are concerned, and why, is worthwhile IMHO.

I'm no Moses. These things are not written in stone.

Thank you Jace. A very rational, sensible explanation.

 

[Angela Kennedy]

If I was privy to confidential information I would not bring my privilege into the public discussion. It's like saying "I know something you don't know", a song often heard in the primary school playground. If you can't say, don't say.

That's true. It's impossible to have a rational debate with an appeal to authority and unknown claims, sadly.

 

[Tristen]

Jace -- a direct line consisted of me finding a publicly posted email address for Lipkin. I wrote him a very respectful letter with no demands. I asked him a few questions which were pertinent to me. I did not do it anonymously either. Rather than sending a demand orginated by an anonymous person (you say it was posted by Pumpkin on the mecfsforums who used to go under the username V99 -- I looked at that post and it seems V99 wrote it judging by her statements) I chose to go straight to the source of the research which makes much more sense to me. The fact that he bothered to spend time during his evening to write back to a person who he does not know shows he does have concern for the patient population.

The letter posted by you seems to be saying Lipkin is incompetent and has no clue about study design and how to use assays. This man is an extremely competent researcher, obviously understands how to do research, and has much experience with these assays. So what does one do, follow the lead of a patient who often posts erroneous information, whose only research consists of googling, who has never done a research study or performed any sort of PCR or related test, who has repeated ad nauseum that all negative studies are flawed. Or do we put our trust in a researcher who has the capability of finding answers with years of experience. I choose to follow the research and the researchers.

There is nothing wrong with sending letters and asking questions. The way it is done perhaps is important.

Kina.

Very well said. And thank you for communicating with Lipkin in such a responsible manner which surely conveys the fact that most of us out here do not support the negativity.

 

[Frickly]

Er - the PACE trial?

Ester Crawley's Lightning Process for children trial?

Um..Can you really compare the two Angela? I don't think so.

 

[Wonko]

I demand that all demands to stop things stop.

Pets and children think demands are a sensible and effective way to get what they want, and even then it only works if the recipient of the demands is feeling indulgent.

As a negotiating tactic demands are right up there with tantrums.

 

[jace]

Hi Frickly, long time no see. Glad to see you're still around. Well, I'd rather you'd got well and busy on other things, but that doesn't seem to be how it works for most of us.

I'm a little confused by your last post. Are you saying you can't compare the SMILE study and PACE, or you can't compare Lipkin and those two? Liberty hall, me, I believe anyone can do what anyone sees fit, re advocacy. I don't mean we can physically harm each other, of course, or be super rude...

Tristan, you say

The letter posted by you seems to be saying Lipkin is incompetent and has no clue about study design and how to use assays.

No-one is saying Lipkin is incompetent. But some of us are suspicious, given the history of research into this disease, of the covert agenda.

So what does one do, follow the lead of a patient who often posts erroneous information, whose only research consists of googling, who has never done a research study or performed any sort of PCR or related test, who has repeated ad nauseum that all negative studies are flawed. Or do we put our trust in a researcher who has the capability of finding answers with years of experience. I choose to follow the research and the researchers.

You can do what you think fit, and so can I. Thanks for the insults. You do not have the knowledge to make these judgements of me, as I do not and would not of you. I believe I once, out of some 700 posts, made a mistake. Got any more evidence?

Again, it's not Lipkin's experience which is not in question. It's the fact that this study is the one to "end the controversy" and "be the last word". It is his reputation as the de-discoverer. It is the absence of detailed protocols, so that we are likely presented with more media soundbites about the "end of XMRV" or some such simplistic twaddle. It's the co-incidence of the debacle at the WPI, and Judy being out of it (as far as we know) and Ruscetti not being involved (ditto)

Science isn't like that. There was no controversy over the age of the Earth before Darwin and co., it could not be more than ten thousand years old, and it was created in a week. There was no controversy over the Earth's position in the universe before Copernicus and co, it was in the centre. Do you see? Science is an ongoing process. Now even the idea, central to physics, that the speed of light cannot be exceeded is in question. The world is a complex place, and we will never know it all.

A mind is like a parachute, it only works if it is open.

I find it interesting that retroviral research keeps, every decade or so, rearing its ugly head up in our disease, and so far it has always been quickly buried again. Two years is no time.

Khaly Castle in her blog, The Mother of all Wormholes said Patients are not pushing for a favorite pathogen. Patients are pushing for real science to occur and to take its course before the door gets slammed on ANY potential avenue of study. Patients are not stupid and are tired of being treated as such. Patients are particularly irked that they point out the discrepancies in scientists and governments claims, and said scientists and government continue to push the mistruths forward as if by saying it loud enough and long enough, it will be true.

There is nothing wrong with sending letters and asking questions. The way it is done perhaps is important.

I'll do it my way, and you can do it yours. No worries.

 

[Angela Kennedy]

Um..Can you really compare the two Angela? I don't think so.

Er- I think you can.

 

[snowathlete]

I demand that all demands to stop things stop.

Pets and children think demands are a sensible and effective way to get what they want, and even then it only works if the recipient of the demands is feeling indulgent.

As a negotiating tactic demands are right up there with tantrums.

Wonko - i like you - this is best post i have read all week!!

The letter posted by you seems to be saying Lipkin is incompetent and has no clue about study design and how to use assays. This man is an extremely competent researcher, obviously understands how to do research, and has much experience with these assays. So what does one do, follow the lead of a patient who often posts erroneous information, whose only research consists of googling, who has never done a research study or performed any sort of PCR or related test, who has repeated ad nauseum that all negative studies are flawed. Or do we put our trust in a researcher who has the capability of finding answers with years of experience. I choose to follow the research and the researchers.

There is nothing wrong with sending letters and asking questions. The way it is done perhaps is important.

Kina.

Kina, that is soooooooo true and well said. Personally i think the letter is a bad idea, at least in its current form, because its not well written and has an obvious edge of disrespect.

Moderator: Rude and inflammatory reference to forum member removed.

Jace, you have to remember that these are on the whole proffesional people doing a job and they deserve to be treated in a dignified manner. Lipkin has said nothing negative about us, nothing to be worried about, nothing that deserves this kind of communication. Fine, you have concerns about the way the study is being done. Thats ok, but put a little consideration into your approach!
You were onto a loser on this posts as soon as you posted that letter in its current form because its obviously going to get peoples backs up! I did what i could to help you, because as you say, everyone is entitled to their opinion, and clearly you are pasionate (if perhaps heavyheanded) but instead of replying and saying "good point, i'll tone it down" when you finally did post again you start having a go at people.
Personally i think we all have enough to deal with without that!

Moderator: inflammatory content removed

Moderator note: Snowathlete, this post was unnecessarily inflammatory and it was explicitly rude to Jace. Although you accuse Jace of 'having a go at people', Jace just responded to arguments which she disagrees with and did not personalise the issues, whereas your response to Jace was personal, rude and inflammatory. Please treat all forum members with respect and stick to the issues. Your earlier post was a polite and reasonable critique; if the points you made were not accepted that can be frustrating but it is not a justification for a personal attack.

 

[Angela Kennedy]

I demand that all demands to stop things stop.

Pets and children think demands are a sensible and effective way to get what they want, and even then it only works if the recipient of the demands is feeling indulgent.

As a negotiating tactic demands are right up there with tantrums.

Well then - you tell all politicians/unions/lobbyists/lawyers to desist from demands henceforth then?

Of course not - many people make demands to highlight issues, show strength etc. in the real world. Even if the 'demand' is ignored, the assertion is enough to bring attention to an issue etc.

Assertions are something similar.

P.s your assertions about pets and animals is mistaken. Power and how it is circulated is an extremely interesting subject to study- and these groups of people/animals often wield power in a far more complex way than your rather simplistic analysis!

Moderator note: Angela, telling someone their analysis is 'simplistic' is unnecessarily provocative. Please be more careful with such wording in future - this point could have been made in a less personal way.

 

[snowathlete]

Um..Can you really compare the two Angela? I don't think so.

Er- I think you can.

No, you cant. Must i explain why?
Moderator: Personal attack removed. If you have concerns about a member's posts, please report them to the moderators and refrain from commenting in the thread itself.
Right, here it is:
The pace trial was a trial that was badly designed (and there is a wide concensus for that) which had obvious flaws (again, a wide consensus to that too) and there was already plenty of evidence that it was not something that worked. It was looking in the wrong area, where patients did not want them to look (for a third time, a wide consensus to that too!) and so it was completelty different to this, because although most of us now think XMRV will turn out to be a mistake, it needs a final study done properly by someone new, without an already formed opinion who is well respected by everybody (because he is you know, in the industry there is really no one better) and thats why this needs to happen. Also, the planning started and the funding was in place before the contamination thing happened, so its silly to drop it now. If you think the funding will get spent elsewhere on ME/CFS, your nieve.
It needs to happen so that we go from 99% sure to 100% sure, and it actually gives a solid foundation for any other scientists who want to find a different retrovirus in ME/CFS. At the moment - who would listen? (Dont answer that)

 

[Wonko]

Well then - you tell all politicians/unions/lobbyists/lawyers to desist from demands henceforth then?

Of course not - many people make demands to highlight issues, show strength etc. in the real world. Even if the 'demand' is ignored, the assertion is enough to bring attention to an issue etc.

Assertions are something similar.

P.s your assertions about pets and animals is mistaken. Power and how it is circulated is an extremely interesting subject to study- and these groups of people/animals often wield power in a far more complex way than your rather simplistic analysis!

Adults who use words like demand also tend to use words like obviously and clearly, for much the same reasons.

I made NO assertions about children or pets, if you think I did then you completely misunderstood, or you are attempting to misdirect.

edit: people in a postion of strength have no need to make demands, it is normally only the weak that make demands, which is one reason why making demands is such a bad negotiating tactic (assuming that the demand isnt a misdirection).

 

[Angela Kennedy]

No, you cant. Must i explain why?
Oh i can see that you will demand it. I can tell by your lack of forum etiquotte.
Right, here it is:
The pace trial was a trial that was badly designed (and there is a wide concensus for that) which had obvious flaws (again, a wide consensus to that too) and there was already plenty of evidence that it was not something that worked. It was looking in the wrong area, where patients did not want them to look (for a third time, a wide consensus to that too!) and so it was completelty different to this, because although most of us now think XMRV will turn out to be a mistake, it needs a final study done properly by someone new, without an already formed opinion who is well respected by everybody (because he is you know, in the industry there is really no one better) and thats why this needs to happen. Also, the planning started and the funding was in place before the contamination thing happened, so its silly to drop it now. If you think the funding will get spent elsewhere on ME/CFS, your nieve.
It needs to happen so that we go from 99% sure to 100% sure, and it actually gives a solid foundation for any other scientists who want to find a different retrovirus in ME/CFS. At the moment - who would listen? (Dont answer that)

Ok.

Moderator: Redundant references to moderated content removed.

Secondly, whatever your opinion of PACE (one I, and you may not know this, have publicly critiqued and complained about since its inception, and indeed am engaged in a complaint process as I write- so I am well aware of its massive flaws) it is nevertheless a trial that (a) has been claimedas excellent and performed by eminent scientists and (b) is full of problems, both actual and potential, and (c) makes claims the data cannot support - which looks like could be the case with the Lipkin trial, as Jace has so politely, and rationally, explained.

These studies have the same in common with Crawley's Lightning Process trial.

You make some gross generalisations about what 'most of us now think', by the way, assertions you cannot substantiate.

Thank you for the naive comment. You are mistaken. Indeed, I am fully aware that that money may not go towards any decent ME research. There is no surprise there, and I gave no indication as to a belief that you would label naive. The purpose of objecting to this trial is to highlight its flaws and the negative implications for proper scientific research on HGRVs in the ME community. People are not naive as to think they can demand things stop and they will. Neither are they naive enough to sit and think every little thing is going to be alright and good science will prevail. Anyone who knows about the politics around this illnesss wouldn't. That is horribly sad, but a necessary education many have had to get.

 

[Frickly]

Hi Frickly, long time no see. Glad to see you're still around. Well, I'd rather you'd got well and busy on other things, but that doesn't seem to be how it works for most of us.

I am not I'm a little confused by your last post. Are you saying you can't compare the SMILE study and PACE, or you can't compare Lipkin and those two? Liberty hall, me, I believe anyone can do what anyone sees fit, re advocacy. I don't mean we can physically harm each other, of course, or be super rude...

I am still around but spending most of my free time on facebook. Sorry for the confusion. I always tell my husband to listen to what I mean not what I say. I meant you can't compare the Lipkin study with those two. I am thankful that Dr. Lipkin has taken such an interest in this disease and in autism. I don't beleive he would follow through with this study if he did not think we could learn something from it. I feel very hopeful and am concerned that some would want to stop this research. But yes, people will do what they see fit so no point in arguing about it. I might just send Dr. Lipkin and email and thank him for his interest and work in these areas.

 

[Angela Kennedy]

Adults who use words like demand also tend to use words like obviously and clearly, for much the same reasons.

I made NO assertions about children or pets, if you think I did then you completely misunderstood, or you are attempting to misdirect.

edit: The assertion made was - people in a postion of strength have no need to make demands, it is only the weak that make demands, which is one reason why making demands is such a bad negotiating tactic (assuming that the demand isnt a misdirection).

Wonko - you are seriously mistaken about the nature and complexity of power and its manifestations. Your assertions here are just not borne out by real world events.

In addition, you DID make (mistaken) assertions about children and pets! This was in order to critique this letter campaign and use them as an analogy about power! I clearly did not either misunderstand - nor am I 'misdirecting'. It's quite clear.

 

[snowathlete]

Its true that you skirt on the edge of rude, whereas i am more open, but every reader gets your tone from the way you, er, construct your sentances.

it seems to me your condescending manner exhibits a lack of etiquette

Absolutely true, i accept that - Im being rude. But then this topic has become a farce, perhaps was from the beggining, so its hardly a surprise.

You make some gross generalisations about what 'most of us now think', by the way, assertions you cannot substantiate.

Not so. Read the other posts all the forum, not everyone has the same view, but the majority have a consensus view on the whole, especially regarding topics like the Lipkin trials, which, let me tell you, most people do not want put at risk by carelessly written letters. Carefully written letters, even if they are critical, do not endanger these trials, but that isnt what is being proposed, is it?

People are not naive as to think they can demand things stop and they will

REALLY? Well what is the title of the topic then???

I rest my case!!

Moderator: Snowathlete, you admit here that you have been rude in this thread, and several of your posts in this thread have been inflammatory. Please avoid such rudeness in future.