Author Topic: Thoughts on the Lipkin Study  (Read 14433 times)

Loona

  • Newbie
  • *
  • Posts: 5
Thoughts on the Lipkin Study
« on: January 08, 2012, 04:05:27 PM »
Oh boy.  How scary.  I'm posting a thread!  I found these concerns re the Lipkin study on facebook, and I thought you people should see it too.

We all know that  an MRV is only detectable by for a short time in the blood following innoculation.  Thereafter it is readily found by PCR in lymphoid tissue, notably spleen, lymph nodes, tonsilluar tissue, lung tissue and intestines.  We also know that for complex reasons the antibody response fades and also becomes undetectable.

This is typical of the behaviour of many other gamma retroviruses.  They infect B cells in the lymph nodes first and then spread to other secondary lymphoid tissues.  They infect a class of B cell which ultimately resides in the peritoneal cavity.  They also infect recycling CD20 B cells because those cells pass through the spleen and a very low percentage of them will become infected.

The trouble is that these cells quite literally burst after a few  days. Memory B cells are also a target for infection but after a short time in the blood they home in on lymphoid tissues again.  The basic message is that  multiple samples at multiple time points need to be taken from an infected patient to have any sort of chance of detecting a MRV in  blood samples. 

The Lipkin study involves  samples taken from a patient on the same day. We also know that the people have been"trying" to find a MRV in people with ME have set their tests to dectect a synthetic clone which does not exist in nature.  Obviously they have no chance of detecting  a real MRV in infected patients.

They are going to be using this method again in the Lipkin study.  Lipkin knows that XMRV (VP62) does not exist in nature so 75% of the researchers will be using tests which have no chance of working.  This will leave Dr Mikovits and Dr Ruscetti attempting to  detect an MRV in blood samples taken from chronically tired people on the same day.  They are both brilliant scientists but contrary to their detractors views there is no evidence that they have magical powers!  Even if  by some incredible feat of ingenuity they are able to detect some virus in some people the difference between the number of ME positives and the numbers of CONTACT controls is certain to be obscured.  Either way we lose.   The Lipkin study has an excellent design for governments and corporate interests but a dire design for people with ME.

jimbob

  • Full Member
  • ***
  • Posts: 203
Re: Thoughts on the Lipkin Study
« Reply #1 on: January 08, 2012, 04:48:37 PM »
Does anybody have a pathway to Lipkin so he can be informed of all this. If he at least acknowledges receipt of this info, then we have something to fall back on if the study fails.
There were hundreds of us and we had completely surrounded the CDC building. We were all over the news, things would surely change now. And then I woke up, FUCK!

awol

  • Hero Member
  • *****
  • Posts: 2405
Re: Thoughts on the Lipkin Study
« Reply #2 on: January 08, 2012, 05:29:52 PM »
Oh boy.  How scary.  I'm posting a thread!  I found these concerns re the Lipkin study on facebook, and I thought you people should see it too.

We all know that  an MRV is only detectable by for a short time in the blood following innoculation.  Thereafter it is readily found by PCR in lymphoid tissue, notably spleen, lymph nodes, tonsilluar tissue, lung tissue and intestines.  We also know that for complex reasons the antibody response fades and also becomes undetectable.

This is typical of the behaviour of many other gamma retroviruses.  They infect B cells in the lymph nodes first and then spread to other secondary lymphoid tissues.  They infect a class of B cell which ultimately resides in the peritoneal cavity.  They also infect recycling CD20 B cells because those cells pass through the spleen and a very low percentage of them will become infected.

The trouble is that these cells quite literally burst after a few  days. Memory B cells are also a target for infection but after a short time in the blood they home in on lymphoid tissues again.  The basic message is that  multiple samples at multiple time points need to be taken from an infected patient to have any sort of chance of detecting a MRV in  blood samples. 

The Lipkin study involves  samples taken from a patient on the same day. We also know that the people have been"trying" to find a MRV in people with ME have set their tests to dectect a synthetic clone which does not exist in nature.  Obviously they have no chance of detecting  a real MRV in infected patients.

They are going to be using this method again in the Lipkin study.  Lipkin knows that XMRV (VP62) does not exist in nature so 75% of the researchers will be using tests which have no chance of working.  This will leave Dr Mikovits and Dr Ruscetti attempting to  detect an MRV in blood samples taken from chronically tired people on the same day.  They are both brilliant scientists but contrary to their detractors views there is no evidence that they have magical powers!  Even if  by some incredible feat of ingenuity they are able to detect some virus in some people the difference between the number of ME positives and the numbers of CONTACT controls is certain to be obscured.  Either way we lose.   The Lipkin study has an excellent design for governments and corporate interests but a dire design for people with ME.

This would be Gerwyn's analysis. Many interesting points. He does however use Weeselian tactic on certain issues (jumping to unjustified conclusions and pushing them dogmatically as fact). It is important to see this when reading this assessment.

1. "chronically tired people" - We have some reports from patients involved in the study that show that a serious effort is being made to assemble a solid cohort. Refering to these patients as chronically tired is insulting to them, and the intention is to set the ground work for denying the study has any value if it fails and if no other more solid scientific flaws can be found other than the vague claim that the patients chosen were not "real ME" patients.

2. I do not know where the information comes from to support the claim that samples will all be taken on the same day, and that repeat sampling will not be done etc. I am not saying this is not true, however a source needs to be provided when making such claims and then attacking the study based on them. It could very well be that Mikovits and Ruscetti, who are involved in the study, have persuaded Lipkin of the importance of multiple draws at different times.

3. While I object at this point as much as Gerwyn does to the stubborn insistence on using vp62 and defining XMRV according to it, I am not sure we have any actual information at all to confirm that 75% or researchers in the study will be doing this, and will continue to display unwillingness to learn from the previous failed studies. On what information is he basing this claim?

4. Where is the actual source that confirms the use of contact controls? I have heard this rumour, but so far not from reliable sources. I would like to see a direct referece made please, Gerwyn and editors.

bakercape

  • Moderator
  • Hero Member
  • *****
  • Posts: 3333
  • I trust Dr.Mikovits.
Re: Thoughts on the Lipkin Study
« Reply #3 on: January 08, 2012, 05:31:06 PM »
The science paper found HGRV in blood samples at 67%. Then at 98% using more serology on blood samples. Correct me if I am wrong please.

Why is the bar being set at tissue samples all of a sudden and by who?

Was the Science paper just a lucky day at the lab? ???

If Alter/Lo and JM/FR have been able to publish  positive results from blood already then why not again?

I'm all for testing tissue also btw. 

« Last Edit: January 08, 2012, 05:36:33 PM by bakercape »
“Any man who is attached to things of this world is one who lives in ignorance and is being consumed by the snakes of his own passions”
― Black Elk

Firestormm

  • Hero Member
  • *****
  • Posts: 666
Re: Thoughts on the Lipkin Study
« Reply #4 on: January 08, 2012, 06:13:31 PM »
I don't think it was written by Gerwyn, but anyway, here's the link: https://www.facebook.com/pages/HMRV-Global-Advocacy/348451488504232

I tend to agree with AWOL for what's it worth. A lot of supposition has gone into the above and it is being presented as fait de compli when in fact we know very little about the 'Lipkin Study'.

Tango

  • Hero Member
  • *****
  • Posts: 12222
  • Paprotka et al. 2011 is a bust!
Re: Thoughts on the Lipkin Study
« Reply #5 on: January 08, 2012, 06:23:13 PM »
The science paper found HGRV in blood samples at 67%. Then at 98% using more serology on blood samples. Correct me if I am wrong please.

Why is the bar being set at tissue samples all of a sudden and by who?

Was the Science paper just a lucky day at the lab? ???

If Alter/Lo and JM/FR have been able to publish  positive results from blood already then why not again?

I'm all for testing tissue also btw.

Tissue samples are always the best way to ensure any animal is infected with a gammaretrovirus as they are incredibly, and in some cases impossible, to find in the blood.  The task of this study is to find if people are infected.  Blood is not the normal way to test any other animal for a gamma retrovirus, so why should humans be treated differently? 

The assays used in Lombardi have not been replicated, neither were those from Lo.  Both assays used low annealing temperatures unlike those from the negative studies.  They also designed their assays to find VP62, the Lombardi and Lo assays did not.  In part it was luck brought about by training from Frank Ruscetti that gave Mikovits the skills to find these viruses in blood.  However, to do so again using different conditions is unrealistic.  If it is not a replication study why expect the same results even if the virus is present.  Tissue studies would reduce such errors massively due to the more high concentration that would be expected in compartments such as the lymph nodes.  Tissue testing for the NIH study should be a priority, not blood.  Why look in blood in an ME patient when we generally have reported problems with compartments such as lymph nodes.
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

Firestormm

  • Hero Member
  • *****
  • Posts: 666
Re: Thoughts on the Lipkin Study
« Reply #6 on: January 08, 2012, 06:29:40 PM »
I don't think it was written by Gerwyn, but anyway, here's the link: https://www.facebook.com/pages/HMRV-Global-Advocacy/348451488504232

I tend to agree with AWOL for what's it worth. A lot of supposition has gone into the above and it is being presented as fait de compli when in fact we know very little about the 'Lipkin Study'.

My 'bad' it appears Gerwyn did write it and Jace: http://forums.phoenixrising.me/showthread.php?15597-Lipkin-Study-more-concerns

Tango

  • Hero Member
  • *****
  • Posts: 12222
  • Paprotka et al. 2011 is a bust!
Re: Thoughts on the Lipkin Study
« Reply #7 on: January 08, 2012, 06:38:03 PM »
This would be Gerwyn's analysis. Many interesting points. He does however use Weeselian tactic on certain issues (jumping to unjustified conclusions and pushing them dogmatically as fact). It is important to see this when reading this assessment.

1. "chronically tired people" - We have some reports from patients involved in the study that show that a serious effort is being made to assemble a solid cohort. Refering to these patients as chronically tired is insulting to them, and the intention is to set the ground work for denying the study has any value if it fails and if no other more solid scientific flaws can be found other than the vague claim that the patients chosen were not "real ME" patients.

The patients won't know if they are to be included in this paper or for other research.  They may be excluded with the criteria they are using at a later date, unbeknown to the patients.  We also cannot take the word of any patient of what criteria they do fit.  It should be a matter of careful screening.  Many of the clinicians involved routinely use Fukuda.  That only requires a person to be tired.  That is insulting to people who are more likely to have a retroviral infection, or anyone with any disease that comes under Fukuda. 

Quote
2. I do not know where the information comes from to support the claim that samples will all be taken on the same day, and that repeat sampling will not be done etc. I am not saying this is not true, however a source needs to be provided when making such claims and then attacking the study based on them. It could very well be that Mikovits and Ruscetti, who are involved in the study, have persuaded Lipkin of the importance of multiple draws at different times.

Would it be an attack if they are collecting samples on the same day?  And if repeat sampling is not done?  Do you agree than that would undermine the study if that they did that? 

Quote
3. While I object at this point as much as Gerwyn does to the stubborn insistence on using vp62 and defining XMRV according to it, I am not sure we have any actual information at all to confirm that 75% or researchers in the study will be doing this, and will continue to display unwillingness to learn from the previous failed studies. On what information is he basing this claim?

The CDC has only ever used VP62.  Lo now uses his failed VP62 assay.  Do you agree then that if their assays are only designed to detect VP62 this undermines the study?  How would you describe their use of assays built to detect a synthetic virus?

Quote
4. Where is the actual source that confirms the use of contact controls? I have heard this rumour, but so far not from reliable sources. I would like to see a direct referece made please, Gerwyn and editors.

Again, I am interested to know what you would think if the controls are contact controls?  That would mean the rates of infection would be dramatically distorted would it not?
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

awol

  • Hero Member
  • *****
  • Posts: 2405
Re: Thoughts on the Lipkin Study
« Reply #8 on: January 08, 2012, 06:56:42 PM »
The patients won't know if they are to be included in this paper or for other research.  They may be excluded with the criteria they are using at a later date, unbeknown to the patients.

This is pure speculation. Possible I suppose, but you have nothing to base the assumption on. Meanwhile we have actual reports from actual patients (not speculation) saying that the screening has involved detailed testing as per CCC.

Many of the clinicians involved routinely use Fukuda.  That only requires a person to be tired.

Not to defend Fukuda, but this is not true. It is Oxford that only requires tiredness. Lipkin has said he is using CCC and Fukuda, as did Mikovits in Lombardi et al.

Would it be an attack if they are collecting samples on the same day?  And if repeat sampling is not done?  Do you agree than that would undermine the study if that they did that?

I have simply said that there is no actual source provided for this claim. Without a source, the assertion must be regarded with skepticism. I don't think I said anything about an attack? In general, I sincerely hope that this study makes full use of the skills and knowledge of Mikovits and Ruscetti. If they say different sample times is essential I will believe them.

The CDC has only ever used VP62.  Lo now uses his failed VP62 assay.  Do you agree then that if their assays are only designed to detect VP62 this undermines the study?  How would you describe their use of assays built to detect a synthetic virus?

As already stated, if you would only read, I "object as much as Gerwyn does to the stubborn insistence on using vp62 and defining XMRV according to it" (now why did I have to repeat that?). We do not, however, have any solid information to confirm what they are doing for this study.

Again, I am interested to know what you would think if the controls are contact controls?  That would mean the rates of infection would be dramatically distorted would it not?

What I think is irrelevant until a source is provided to back up the claim that this is what is being done. I will not attach a lengthy flame war on the use of contact controls to a discussion of the Lipkin study if this in fact has nothing to do with what is being planned. That would be highly misleading. Provide a source to back up the claim.

Roy

  • Hero Member
  • *****
  • Posts: 741
  • former ME/"CFS" lobbyist
Re: Thoughts on the Lipkin Study
« Reply #9 on: January 08, 2012, 07:20:35 PM »
ME/"CFS" patients are too disabled to do adequate advocacy. Other diseases have far more activists -- usually family members. How can we get more good healthy people involved?
 
ME/"CFS" since 1970 after mononucleosis at age 16.
Volunteer ME/"CFS" Washington DC Lead Lobbyist in the early 90s.

awol

  • Hero Member
  • *****
  • Posts: 2405
Re: Thoughts on the Lipkin Study
« Reply #10 on: January 08, 2012, 07:24:23 PM »
Last month Gerwyn seemed to be all for Lipkin.

http://peoplewithme.com/Thread-Dont-worry-Ian-Lipkin-is-not-looking-for-XMRV?pid=2940#pid2940

I actually read that post as his particular style of sarcasm...?

Flopsy

  • Hero Member
  • *****
  • Posts: 1021
Re: Thoughts on the Lipkin Study
« Reply #11 on: January 08, 2012, 07:31:30 PM »
Awol,

I hope that you will please reconsider your use of the words "Weeselian tactic" in your critique of Gerwyn's comments on Lipkin.

Comparing a patient who is explaining his concerns about an important upcoming research project in that way isn't fair and it detracts from your own arguments.
« Last Edit: January 08, 2012, 07:41:36 PM by Flopsy »

Tango

  • Hero Member
  • *****
  • Posts: 12222
  • Paprotka et al. 2011 is a bust!
Re: Thoughts on the Lipkin Study
« Reply #12 on: January 08, 2012, 07:36:49 PM »
This is pure speculation. Possible I suppose, but you have nothing to base the assumption on. Meanwhile we have actual reports from actual patients (not speculation) saying that the screening has involved detailed testing as per CCC.

I have found out that the info is from patients taking part. 

Quote
Not to defend Fukuda, but this is not true. It is Oxford that only requires tiredness. Lipkin has said he is using CCC and Fukuda, as did Mikovits in Lombardi et al.

Ok its fatigue and 4 minor symptoms.  That isn't a disease and could and will be anyone.  When did Lipkin say what is to be used?  If they use Fukuda first that will exclude those with CCC.  Lombardi was the other way around. 

Quote
I have simply said that there is no actual source provided for this claim. Without a source, the assertion must be regarded with skepticism. I don't think I said anything about an attack? In general, I sincerely hope that this study makes full use of the skills and knowledge of Mikovits and Ruscetti. If they say different sample times is essential I will believe them.

The patients are the source.
You had said "however a source needs to be provided when making such claims and then attacking the study based on them." 
Their methods rely on specific sample testing.  If it is not replication what use is it?  If Judy and Frank cannot draw the samples the way they need to they are not having their methods or science tested.

Quote
As already stated, if you would only read, I "object as much as Gerwyn does to the stubborn insistence on using vp62 and defining XMRV according to it" (now why did I have to repeat that?). We do not, however, have any solid information to confirm what they are doing for this study.

Then you agree using VP62 would be a deliberate action to not find the viruses discovered.
What other test does the CDC have?  The Lo lab has not said they are going to use anything but their failed VP62 assay.

Quote
What I think is irrelevant until a source is provided to back up the claim that this is what is being done. I will not attach a lengthy flame war on the use of contact controls to a discussion of the Lipkin study if this in fact has nothing to do with what is being planned. That would be highly misleading. Provide a source to back up the claim.

It is from patients taking part.   

The statement at the start of this thread also said that objective measurements would stop opponents fillling people with chronically tired people in the FUTURE.

Anyone who doubts that people known to the participants will be used as controlls should e mail Lipkin and ask him to deny it.  Also ask him how pPCR assays are going to be optimised. 

Its as bad as having lab workers as controls in the blood study.
« Last Edit: January 08, 2012, 07:46:08 PM by Tango »
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

awol

  • Hero Member
  • *****
  • Posts: 2405
Re: Thoughts on the Lipkin Study
« Reply #13 on: January 08, 2012, 08:07:22 PM »
Awol,

I hope that you will please reconsider your use of the words "Weeselian tactic" in your critique of Gerwyn's comments on Lipkin.

Comparing a patient who is explaining his concerns about an important upcoming research project in that way isn't fair and it detracts from your own arguments.

My comment is perhaps harsh but it will stand. I find that Gerwyn has been abusive of other patients repeatedly over the course of the last two years. This abusiveness is aimed at discrediting and ridiculing anyone who disagrees with his concept of the disease, the politics and the framing of the debate.

This is precisely the way Weesely operates: He abuses patients in order to enhance his own stature and ensure that the debate follows the lines he has set for it.

Gerwyn is, in general, no Weesely - his objectives seem more sincere and well intentioned. But that does not excuse the tactics in my opinion.

Tango

  • Hero Member
  • *****
  • Posts: 12222
  • Paprotka et al. 2011 is a bust!
Re: Thoughts on the Lipkin Study
« Reply #14 on: January 08, 2012, 08:30:49 PM »
ok, where? Can you post a link?

Better idea - how about you actually do this yourself - or Gerwyn, and anyone else who wants to make this claim? Why the constant insistence that others do the work to support/deny your claims for you?

Ask the patients taking part awol, I have.  Or better yet Lipkin.  It's dead easy to email him.


"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin