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Lipkin bad news folks

VillageLife

Senior Member
Messages
674
Location
United Kingdom
Posting this here, so nobody misses this!

---------

http://peerobservationsmagazine.com/demo/radio-show/

Join us on October 7th for the whole true story about XMRV, Dr. Mikovits' term at WPI, accusations of theft, misappropriations, data withholding, trade secrets, contracts, grants, contamination, termination, cover-ups, and lots more.

This will be the very first time Dr. Mikovits has spoken in public about what really happened -- and where things are now. If you have questions for Dr. Mikovits that you would like answered on the show, please send them to show host atpeerobmagazine@aol.com and listen in for your question to be asked and answered.

In Short Order radio show http://www.blogtalkradio.com/in-short-order
“In Short Order” The radio show that brings the experts to you because you deserve only the best!
Tune in every Sunday 7-9 PM EST

www.blogtalkradio.com/in-short-order

October 2012 Schedule

Oct 7th Judy Mikovits, Ph.D. – For The First Time, You Will Hear The Whole Story
 

jace

Off the fence
Messages
856
Location
England
> In response to patient questions about whether or not any "positives" were found by labs in the Multi-Center study, Dr. Ian Lipkin replied (quote):

> "The investigators reported results as positive or negative according to their own criteria. The only requirement was that once criteria were established results could not be changed through modifications in criteria. I know this is not the intention of those who continue to pose these questions; nonetheless, the impact of this continued challenge to work of the team is that some people in the scientific community who might contribute are becoming reluctant to work on CFS/ME. Additionally, it causes distress to Mikovits, Ruscetti, Alter and Lo who have already spoken their views and would like to invest their expertise and resources productively. The origin of XMRV as an artifact has been clearly established in CFS/ME and prostate cancer."

https://www.facebook.com/permalink.php?story_fbid=478847245480642&id=191236810908355

Shades of the Wesseley 'Death Threat' spin, Daily Mail emotional blackmail at it's worst. Genuine scientific questions are only a threat to those trying to manipulate the agenda. I'm appalled by this statement.
 

pollycbr125

Senior Member
Messages
353
Location
yorkshire
Shades of the Wesseley 'Death Threat' spin, Daily Mail emotional blackmail at it's worst. Genuine scientific questions are only a threat to those trying to manipulate the agenda. I'm appalled by this statement.

yeah I can't say im happy about this either .There are still too many issues that havent been addressed properly and since when has asking valid questions about a scientific study been wrong ? This could only happen in the world of me/cfs . Where would Aids / HIV patients been today if they hadnt asked questions ? infact any other illness on the planet .

I also thought we were all supposed to be making more noise yet ask a valid question and its a case of stfu :aghhh: sorry but you cant have it both ways .
 

currer

Senior Member
Messages
1,409
The body language of all the researchers in the Lipkin press conference did not look constrained to me.

I think they genuinely could not establish a connection between XMRV / PMLVs and disease, and hunting after smaller and smaller "positives" is not going to be fruitful.

Anyway, we have known for a long time that XMRV as such was an artifact, the only real question that remained was whether PMLVs were associated or not.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Posting this here, so nobody misses this!

---------

http://peerobservationsmagazine.com/demo/radio-show/

Join us on October 7th for the whole true story about XMRV, Dr. Mikovits' term at WPI, accusations of theft, misappropriations, data withholding, trade secrets, contracts, grants, contamination, termination, cover-ups, and lots more.

This will be the very first time Dr. Mikovits has spoken in public about what really happened -- and where things are now. If you have questions for Dr. Mikovits that you would like answered on the show, please send them to show host atpeerobmagazine@aol.com and listen in for your question to be asked and answered.

In Short Order radio show http://www.blogtalkradio.com/in-short-order
“In Short Order” The radio show that brings the experts to you because you deserve only the best!
Tune in every Sunday 7-9 PM EST

www.blogtalkradio.com/in-short-order
October 2012 Schedule

Oct 7th Judy Mikovits, Ph.D. – For The First Time, You Will Hear The Whole Story

Update:

Dr. Mikovits' radio show has been changed to Nov. 4th, 4-6 PM PT


Please note Dr. Mikovits will be on this radio internet show Nov. 4 instead of tonight.

Radio Show: In Short Order -- Dr. Judy Mikovits

Thank you for all of the Dr. Judy questions. Due to illness, Dr. Mikovits has rescheduled her interview for November 4, 2012. Please keep sending your questions to <peerobmagazine@aol.com> as they will be addressed.

Remember that Dr. Mikovits will be at the 2013 Physician's Round Table conference.


http://www.mecfsforums.com/index.php/topic,13645.15/topicseen.html

I must remember to cancel my holiday to Hawaii. NOT.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
And does anyone actually know if Frank Ruscetti lost his job, had his funding removed, or has stopped doing XMRV research?

Of course he bloody didn't. Another load of nonsense from AofA. I understand Ruscetti has been due to retire for some time and any 'gagging' over XMRV was at the instigation of his institute. I dare say he and others were inundated with patient correspondence and when this controversial issue became ever more controversial the institute decided not to engage as they had done before and this applied to their employees too. If I recall it was all on their website.

There has been so much 'spin' throughout this debacle and most of it (all of it) has originated with presumed patients in my opinion regurgitating and reinterpreting expressed and often-times unevidenced opinion of the key players i.e. Mikovits. AofA's sole involvement began with the very very very first appearance by Mikovits and Whittemore on Nevada Newsmakers and the leak (because that is what it was) of a hint that XMRV had also been linked to Autism. A leak that has never ever ever been backed up. Another false hope/false scenario based on pixie dust.

Oh it's 'great' to be back. I can't believe this sort of nonsense is still revolving around this of all forums. More - "Lipkin was positive" yeah of course it was - like in your dreams. Mikovits was 'forced' to comply. Yeah. Of course she was what with the gun to her head and all. And AofA is a reliable source of insight. Get real. Oooo maybe their article was like pulled because it was so revealing of the truth that the CIA swooped in and censored it.
 

currer

Senior Member
Messages
1,409
Not sure what you mean, Bob, because of course XMRV wont be researched in connection with human disease now.

This is the same Lipkin, isn't it?
Neurotoxic effects of postnatal thimerosal are mouse strain dependent.

Hornig M, Chian D, Lipkin WI.
How population-based variability affects the safety of the ethylmercury-containing vaccine preservative, thimerosal, is unknown. Reported increases in the prevalence of autism, a highly heritable neuropsychiatric condition, are intensifying public focus on environmental exposures such as thimerosal. Immune profiles and family history in autism are frequently consistent with autoimmunity. We hypothesized that autoimmune propensity influences outcomes in mice following thimerosal challenges that mimic routine childhood immunizations. Autoimmune disease-sensitive SJL/J mice showed growth delay; reduced locomotion; exaggerated response to novelty; and densely packed, hyperchromic hippocampal neurons with altered glutamate receptors and transporters. Strains resistant to autoimmunity, C57BL/6J and BALB/cJ, were not susceptible. These findings implicate genetic influences and provide a model for investigating thimerosal-related neurotoxicity.
 

currer

Senior Member
Messages
1,409
Impaired carbohydrate digestion and transport and mucosal dysbiosis in the intestines of children with autism and gastrointestinal disturbances.

Williams BL, Hornig M, Buie T, Bauman ML, Cho Paik M, Wick I, Bennett A, Jabado O, Hirschberg DL, Lipkin WI.
Source

Center for Infection and Immunity, Columbia University, New York, New York, United States of America.
Abstract

Gastrointestinal disturbances are commonly reported in children with autism, complicate clinical management, and may contribute to behavioral impairment. Reports of deficiencies in disaccharidase enzymatic activity and of beneficial responses to probiotic and dietary therapies led us to survey gene expression and the mucoepithelial microbiota in intestinal biopsies from children with autism and gastrointestinal disease and children with gastrointestinal disease alone. Ileal transcripts encoding disaccharidases and hexose transporters were deficient in children with autism, indicating impairment of the primary pathway for carbohydrate digestion and transport in enterocytes. Deficient expression of these enzymes and transporters was associated with expression of the intestinal transcription factor, CDX2. Metagenomic analysis of intestinal bacteria revealed compositional dysbiosis manifest as decreases in Bacteroidetes, increases in the ratio of Firmicutes to Bacteroidetes, and increases in Betaproteobacteria. Expression levels of disaccharidases and transporters were associated with the abundance of affected bacterial phylotypes. These results indicate a relationship between human intestinal gene expression and bacterial community structure and may provide insights into the pathophysiology of gastrointestinal disturbances in children with autism.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Neurotoxic effects of postnatal thimerosal are mouse strain dependent.

Hornig M, Chian D, Lipkin WI.
How population-based variability affects the safety of the ethylmercury-containing vaccine preservative, thimerosal, is unknown. Reported increases in the prevalence of autism, a highly heritable neuropsychiatric condition, are intensifying public focus on environmental exposures such as thimerosal. Immune profiles and family history in autism are frequently consistent with autoimmunity. We hypothesized that autoimmune propensity influences outcomes in mice following thimerosal challenges that mimic routine childhood immunizations. Autoimmune disease-sensitive SJL/J mice showed growth delay; reduced locomotion; exaggerated response to novelty; and densely packed, hyperchromic hippocampal neurons with altered glutamate receptors and transporters. Strains resistant to autoimmunity, C57BL/6J and BALB/cJ, were not susceptible. These findings implicate genetic influences and provide a model for investigating thimerosal-related neurotoxicity.

An intriguing find, currer. It links autism to autoimmunity and vaccines, which indirectly links autism and ME. Very interesting. I wonder if the research was followed up.


There's a slightly different abstract here:

Neurotoxic effects of postnatal thimerosal are mouse strain dependent.

Hornig M, Chian D, Lipkin WI.

Source
Jerome L and Dawn Greene Infectious Disease Laboratory, Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, NY 10032, USA. mady.hornig@columbia.edu

Abstract
The developing brain is uniquely susceptible to the neurotoxic hazard posed by mercurials. Host differences in maturation, metabolism, nutrition, sex, and autoimmunity influence outcomes. How population-based variability affects the safety of the ethylmercury-containing vaccine preservative, thimerosal, is unknown. Reported increases in the prevalence of autism, a highly heritable neuropsychiatric condition, are intensifying public focus on environmental exposures such as thimerosal. Immune profiles and family history in autism are frequently consistent with autoimmunity. We hypothesized that autoimmune propensity influences outcomes in mice following thimerosal challenges that mimic routine childhood immunizations. Autoimmune disease-sensitive SJL/J mice showed growth delay; reduced locomotion; exaggerated response to novelty; and densely packed, hyperchromic hippocampal neurons with altered glutamate receptors and transporters. Strains resistant to autoimmunity, C57BL/6J and BALB/cJ, were not susceptible. These findings implicate genetic influences and provide a model for investigating thimerosal-related neurotoxicity.

http://www.nature.com/mp/journal/v9/n9/full/4001529a.htmlhttp://www.nature.com/mp/journal/v9/n9/full/4001529a.html

.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I do recall of the various interviews Lipkin gave recently Currer that he said, and here I paraphrase:

"We did with XMRV and CFS what I was able to do with Wakefield and Autism. Slam dunked it. And that's what I would like to be able to do, what I think should be done, with all such notions."

Lipkin was involved in proving Wakefield wrong Currer but not obviously in what you posted above/or the way you have posted it.

If you wait a while I'll dig up what he was involved with and how Wakefield was indeed QUASHED but to be honest I cannot be arsed.

I mean he said he had been involved with proving Wakefield wrong - and whilst my comment above might be tongue in cheek it was essentially what was said. Though (as I have said elsewhere in discussions on this) quite how you could fund such studies for all 'quack' theories (my word suppose I could have used "left-field" theories) I really do not know or understand.

Perhaps he meant - because he was actually saying "if only we'd been able to respond as fast and in this way to Wakefield's notions we could have preventing the sharp decline in innoculations we have seen and (my inference) saved some lives as well as reduce the increased prevalence of measles perhaps" - therefore he would really like to use this sort of platform of research i.e. involving Wakefield and Mikovits etc. for projects involving contentious issues or issues that are adversely affecting/challenging public sentiment/safety.

Again though, I have to ask how the heck such a thing could be organised, but it does go a long way to reinforcing the view that what we have seen was an appropriate and highly commendable response to the 'dilemma'. Our condition has been placed under the spotlight and I personally do not want to see any more crap associated with it by those who for whatever their reasoning, want to continue posing 'What if's?' let alone seeking to deliberately undermine the effort that has gone into this.

Any attempt - now that Mikovits' work and my condition has been on several occasions now and by reputed researchers as well as commentators - to continue and push the notion that Lipkin was wrong and Mikovits was really right - just like Wakefield's: ANY attempt to push us closer together with that man - will see our condition BURIED on the credibility front.

Talk about negative publicity...!
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Humph, well slight memory leakage I guess:

Why was this study necessary, given the failed replication efforts?

The only thing that matters is that the people who originally reported the finding had an opportunity to test it with a large, appropriately powered group. This was the definitive study and it was crucial that it be done properly.

Had we done this when Andrew Wakefield [the former medical researcher who proposed that autism was caused by vaccines] came out with the initial report5 about the measles, mumps and rubella (MMR) vaccine and autism, and had something this definitive, there are many more children who would have been vaccinated against measles during the ten years it took us to finally complete the MMR–autism work6. So I think it’s crucial that we don’t do things in a half-baked fashion, so we can test hypotheses and move on to new ones.

http://www.nature.com/news/the-scientist-who-put-the-nail-in-xmrv-s-coffin-1.11444

I have a feeling Wakefield was mentioned more than this by Lipkin recently, but I don't have the effort right now to dig it out.

Anyway, my feeling remains. I don't want to see my condition linked any further to the notions (discredited) of Wakefield anymore than they have done.

It will see our credibility buried even if said views can be parcelled off to 'militants'.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Of course he bloody didn't. Another load of nonsense from AofA. I understand Ruscetti has been due to retire for some time and any 'gagging' over XMRV was at the instigation of his institute. I dare say he and others were inundated with patient correspondence and when this controversial issue became ever more controversial the institute decided not to engage as they had done before and this applied to their employees too. If I recall it was all on their website.

There has been so much 'spin' throughout this debacle and most of it (all of it) has originated with presumed patients in my opinion regurgitating and reinterpreting expressed and often-times unevidenced opinion of the key players i.e. Mikovits. AofA's sole involvement began with the very very very first appearance by Mikovits and Whittemore on Nevada Newsmakers and the leak (because that is what it was) of a hint that XMRV had also been linked to Autism. A leak that has never ever ever been backed up. Another false hope/false scenario based on pixie dust.

Oh it's 'great' to be back. I can't believe this sort of nonsense is still revolving around this of all forums. More - "Lipkin was positive" yeah of course it was - like in your dreams. Mikovits was 'forced' to comply. Yeah. Of course she was what with the gun to her head and all. And AofA is a reliable source of insight. Get real. Oooo maybe their article was like pulled because it was so revealing of the truth that the CIA swooped in and censored it.

I hear you Firestormm. Honestly it baffles me that some people dont see that they are causing damage to the ME communities chances of progress. We've got one of the world's most renowned scientists working on our illness and money being spent for the first time on on good research, and yet some people still seem very unhappy. Different people have different opinions, I get that, and actually I think its good for the community that people express their different views even if they arent popular with everyone.

Our illness is so un-sexy already, we should be going out of our way to make people like Lipkin feel appreciated. Not least because of his reputation but because other scientists take note when they hear his name and may become interested in ME because of that association.

What I really dont get is what people hope to achieve by the continued questioning of the research and peoples motives, and so on, when it is clearly not going to change things? No amount of questioning the study, even if it has flaws (and I dont necesarily believe it did) is going to change anything. It wont be re-run a second time just the way everyone wants it (not that it could be anyway, because as i've stated already, people have different views). People wont be looking at any statistically insignificant results, because there are better targets to spend time money and energy on. Nothing positive can come from it, no matter how much this continues. There will be no more XMRV work because its a dead issue now. Its dead because science has proven it a dead issue for ME. But even if you doubt the science, it is still dead, despite those beliefs, because most people do believe in the published science.
 

currer

Senior Member
Messages
1,409
The Lipkin/MMR paper you have quoted, firestormm, could not prove the contention that measles vaccine in the gut of children led to autism by persisting in the gut and causing leaky gut syndrome - which in turn led to toxins spreading in the bloodstream and causing autism. (at the end of a long chain of events)
(Given the suddenness with which autism can develop in a previously apparently healthy child, this line of reasoning seems something of a straw man)


It does not disprove any other connection (if you reverse the chain of reasoning) between vaccines, adjuvants, or preservatives in those vaccines causing an autoimmune reaction, - encephalitis - and eventually through disturbed immunity - gut dysbiosis.


That Lipkin study did find two cases of persistent measles vaccine strain in the gut, one in patients and one in controls.

But vaccines could be causing disease if you reverse the process and suggest that immune dysfunction led to the persistence of the viral vaccine strain, and it could be possible that in a susceptible percentage of the population vaccines or their adjuvants cause autoimmune disease which can manifest in several different forms as different diseases.

http://www.biomedcentral.com/1471-2172/12/61

"Despite being immune enhancers, adjuvants could also cause aggravation of autoimmune disorders. An isoprenoid adjuvant, pristane, has been shown to promote lupus-like syndromes and pathologic nephritis in both autoimmune-prone and non-susceptible mouse strains after a single intra-peritoneal administration [9-11"

"Once considered "immunologists' dirty tricks", adjuvants are garnering considerable attention with regard to their modes of action, safety, and effectiveness. A major focus is to overcome the constraints of empiricism in the choice of adjuvants and develop efficacious vaccines for populations with varying degrees of immune competence."


The incidence of autoimmune diseases is rising. We should be looking for the reason for this. Women are particularly prone to autoimmune disease, about 2/3 of sufferers are female.

We need to understand the reason for ME having become more prevalent since the eighties. It cannot be a purely genetic reason otherwise this rate would be static, there must be an additional environmental factor.
http://www.aarda.org/autoimmune_statistics.php


Autism and ME could both be autoimmune diseases, with encephalitic symptoms. The second paper from Lipkin even mentions this possibility with regard to autism.
"Immune profiles and family history in autism are frequently consistent with autoimmunity"

The percentage of PWME who have family members with autoimmune diseases is higher than average.
The percentage of PWME who have family members with autism is higher than average.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
I would like to use this forum to air whatever is on my mind in regard to cfs/me. I don't go to press conferences and shoot off my mouth because I don't feel I have the science background.....but this is just a forum, for patients.

"Those who cannot remember the past are condemned to repeat it"
 

currer

Senior Member
Messages
1,409
Actually I agree with you xrayspex. (Sometimes I wish we had the facility to "like" a post twice!)

I think we are free to discuss whatever we like here.

I am not sure why anything we say here could "put off" researchers. This is a forum for patients.

We dont control funding - if we did there would have been proper research funding put into this disease for many years past. We know we have very little power. There aren't even that many of us here.

Do you think our forums are checked and read by the research community? (apart from one or two individuals?) I doubt it.

I suppose the scientific world must be very small and very unused to fame (or notoriety!) as no-one who was not already involved in these debates would know anything about it or have any interest in the personalities involved.

On this forum anyway, people are generally polite.
 

currer

Senior Member
Messages
1,409
Since coming to this forum I have learnt that there seems to be a family tendency for autism and ME as linked syndromes.
I did not know that before.
 

natasa778

Senior Member
Messages
1,774
Lipkin in recent Discover interview:


Your newest research looks at a particularly insidious set of chronic diseases that can result from infection in the womb. These diseases can produce lifelong psychiatric effects. How does that work?

The connection between prenatal infection and damage to the fetus has long been known. Exposure to syphilis, at its most extreme, results in stillbirth. Prenatal exposure to infections could result in microcephaly [a neurodevelopmental disorder in which the circumference of the head is smaller than normal]. But if the damage is more subtle, subtle changes in behavior can result. The child is still breathing, the child is walking, the locomotor function is not so abnormal that it’s incompatible with life in our culture. There was a time when these children would have died in utero, but now they survive, and you see some of these abnormalities come to the fore.
Have we reached the point where we can link specific infections to specific psychiatric disorders?

No, the connection is much more complex. When I worked with LCMV, it became clear that any sort of perturbation could damage the nervous system. Nerves find their way to specific locations through signposts that are part of the immune system. And if you increase immunological molecules of certain types, a nerve may jog this way as opposed to the way it’s supposed to go. It may not make a difference what the infectious agent is—bacterial, viral, or parasitic.


If the identity of the infection isn’t critical, what is?

The important things are the genetic background of the individual and the timing of the insult. If you look at the original work on the epidemiology of thalidomide [a morning-sickness drug that turned out to cause birth defects], there were specific time points where, if the woman was exposed, the baby had a high probability of having bona fide autism.
One of the most fascinating links between infection and mental disease concerns PANDAS, pediatric autoimmune neuropsychiatric disorders. The bottom line is that strep might cause obsessive-
compulsive disorder. How could that happen?

An infection like strep throat provokes an antibody response, but the antibody created to fight the strep also recognizes proteins that are part of your body. Antibodies don’t typically traffic much in the central nervous system. But if you have any one of a number of other infections or an insult like head trauma, the blood-brain barrier [which normally protects the brain from pathogens] opens transiently. Depending on how long and where the opening is, the antibodies get access to part of the central nervous system or brain. We are studying this process now in mice, using drugs to open up a portion of the hindbrain or the forebrain or the hippocampus and tracking the effect.
Could autism be another version of a PANDAS-like disease?

It’s possible, in some people. There is probably a group of people who have a genetic component to autism, and for them, there may not be much of a trigger or any trigger at all required. Another group is genetically predisposed, and if they encounter some factor or factors, individually or in combination, it could result in either the onset or the aggravation of the neurodevelopmental disorder; by factors, I include everything from heavy metals to infection. And lastly, there is a group that may be relatively or entirely normal but is exposed prenatally to some factor or factors that have an effect on their nervous system and that manifests as autism. This is the hypothesis, at least.
You are trying to put all this research together through a prospective study called the Norwegian Autism Birth Cohort. What’s that about?

The idea is that you can get only so far by examining people when they’re sick, because the seeds of illness may be laid many years before. In a prospective cohort, you can follow children 
from before birth in an unbiased way, collecting information and samples and maybe making associations between factors and outcomes after the fact. We’re going back as far as we can, which is the first prenatal visit at roughly 17 weeks’ gestation. And the study is being done in Norway because there’s universal health care; you don’t have to be concerned about discrimination for insurance purposes based on disease, and as people get ill, you have long-term follow-up.
What could that study tell you about the nature of autism?

We have thousands of biological samples that will be transferred back here to New York, and we’re going to analyze them using all the tools of microbiological analysis we developed to look at acute diseases in the past. Because we have blood samples that are obtained from the mother during the course of pregnancy and at the time of birth, we can examine a whole range of proteins and messenger RNA s that may be reflective of genetic defects or exposures. We may not detect an autism-causing agent specifically, but we will see that there is a marked increase in specific biomarkers. This allows us to define in a very broad sense what proteins, nucleic acids, pathogens, and toxins might be part of the milieu of the fetus.
 

currer

Senior Member
Messages
1,409
The problem with some research hitherto on autism is that it has looked at triggers for disease in isolation.
Thimerosal has been phased out of paediatric vaccines, but the autism rate appears to be unaffected by this change.

The Lipkin research above is looking at many routes to a disease state.
Nerves find their way to specific locations through signposts that are part of the immune system. And if you increase immunological molecules of certain types, a nerve may jog this way as opposed to the way it’s supposed to go

But what bothers me about much of this research is it disregards the parents' reports - that their children were not born with autism and were developing normally - then reacted badly to a vaccine. And we know this can happen - which is why we have vaccine injury compensation.