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Lipkin presenting at WPI

Messages
13,774
I think he's visiting WPI because in the early returns they have nailed the blinded samples. Why would he visit if they couldn't repeat their original results?

Have they even been sent the samples yet? When we last saw a time-line it looked painfully slow.

I think that the Lipkin study is solid enough that whatever the results, they'll be accepted. I guess those who thikn all XMRV is contamination could claim that the WPI were able to distinguish between CFS and healthy control samples for a reason other than XMRV - but that seems unlikely.
 

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
Annette Whittemore mentioned in her recent TV interview that they were looking forward to having a chance to talk to Dr. Lipkin privately. It can only be good for more communication to happen.
The TV interviewer asked a logical question, which was something like "Why haven't the CDC visited your lab?"
Whoever visits the WPI's lab, I hope they wash their labcoats first!!!
 

5150

Senior Member
Messages
360
lipkin arrives at WPI today and speaks tomorrow. exciting. i hope WPI "wows" him with their knowledge and skill, and he becomes a convert to the world of xmrv (instead of agnostic).

personally , i can attest to the World Class facilities at the University of Nevada, Reno; the wow factor is impressive.

although i haven't seen Columbia's campus, or Lipkin's lab, he most certainly will appreciate Judy's surroundings. it's a beautiful place, impeccably well kept.

of course, none of this should influence his scientific perspective ;)
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I think he's visiting WPI because in the early returns they have nailed the blinded samples. Why would he visit if they couldn't repeat their original results?

Hi toddm1960, his visit is part of a public relations and information exercise is my guess. Aren't the results blinded - they are not supposed to be decoded until near the end? Bye, Alex
 

5150

Senior Member
Messages
360
I'm hoping to hear about what Ian Lipkin said today. it's still a bit early right now, but maybe someone who was there can post "anything new" or not?
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Reaction to Lipkin talk

Distributed by the Help ME Circle listserv:

~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
>>>>> Help ME Circle <<<<
>>>> 26 June 2011 <<<<
Editorship : j.van.roijen@chello.nl
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

A participant of the meeting below and member of
Help ME Circle, became furious after reading the
denigrating impertinences by Prof. Simon Wessely in
the article *Dangers of research into chronic fatigue
syndrome* by the freelance journalist Nigel Hawkes.

(reference: *Wessely & White: Weeping Bitterly* Help
ME Circle, 24 June 2011 - BMJ 2011;342:d3780)

He specially quoted S.W:

*Theyre damaged and disturbed, with an obsession
about psychiatry. With these people, it isnt that they
dont want to get better but if the price is
recognising the psychiatric basis of the condition,
theyd rather not get better.*

He was not sure if the text is confidential, so wants
to stay anonymous, but he could not resist to inform
the sufferers of the unbearable disease ME/CFS about
the exiting report below, from the conference on
XMRV in Reno - 24/06/11 (?)

Because of the weekend I couldn't reach him, but if I
understood him well, I suppose (but not quite sure),
that the text is written by Dr. Paul Cheney.



~jan van roijen



````



'I and a few other colleagues just completed a large
conference call with NIH officials and many interested
parties regarding the proposed *Lipkin* study which is
poised to soon be launched.

Results are expected by early next year or sooner on
150 CFS cases and 150 matched controls from six
centers familiar with CFS (Stanford U., Harvard U.,
U. Miami, NYC, Incline Village and Salt Lake City).
These cases are from three academic centers and
three private practices who see CFS cases.

The study, independently agreed upon by three XMRV
investigators (WPI-Mikovits, FDA-Lo/Alter and
CDC-Switzer), and overseen by Ian Lipkin himself at
the NIH will resolve the current disagreements on:


a) the existence of detectable XMRV/MLV in CFS

and

b) the association of XMRV/MLV with CFS.


After listening to about 20 key players on three
continents as well as Lipkin himself who appears very
non-partisan, there is no doubt in my mind what this
study will show with the full backing of the NIH in its
outcome and conclusions.


The good thing will be that all reagents will be
certified as contaminant free.

All samples will be collected the same way and
cases/controls assessed the same way.

In the analysis, though different labs will do *their
thing*, they are allowed the methods they choose.

If a sample is positive from any of the three, it will be
counted positive and if any sample is negative from all
three, it will be counted as negative.

If one sample is positive from one site and negative
from the other two, it will be deemed positive for
purposes of the study conclusions.

Judy Mikovits will employ four different assays
(culture, PCR, western blot with sequencing and
serology) while Alter/Lo will employ PCR on plasma and
Switzer will use PCR on extracted DNA as sole tests.


May the games begin and the best man or woman
win.

If Judy Mikovits can, in a blinded fashion, come to the
same conclusions she arrived at before in the Science
paper, the sky will fall in on all other naysayers and
reputations and egos will suffer great humiliation.

I am confident she will do well and so is she.

If not, the patients are no worse off than before and
this disease will remain the enigma it has always been
to those who treat it and those who live it.

However, I would not want to be Switzer or the CDC
or Jay Levy or Singh or John Coffin or the Science
editors or most of the UK medical establishment right
now.

The odds are not in their favor but we will see. I think
they are all on the Titanic after what I heard today.'

This looks like a good experiment. Definitely will add very valuable info to the field, unlike many others that have been done. But is this really the be all, end all conclusive study that Fauci and the establishment is billing it as? Not a scientist, but did it really take a supposed genius like Lipkin, $1M+ and a couple years+ after the science papers to come up with and carry out this pretty simple and common sense experiment?

And we are supposedly irresponsibly wasting precious resources by insisting that a modicum of proper research be done (such as this experiment) according to Levy and the other science obstructionists?
 

Enid

Senior Member
Messages
3,309
Location
UK
Thanks justin - missed that. After all the egomaniac posturing and vitriol from the psyche clique another Titanic would be very welcome.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Yes, it sounds very good, but i guess we will really have to wait until we see the results. I'm a bit scared to jump to a conclusion now. Also the signs at the NCI, for example, at the moment don't look like full backing of the NIH for XMRV/MRV in ME/CFS. I don't want to sound negative, but i think we will know when the study is done, not earlier. It seems they mentioned a date for completion that is a bit later than what we've heard earlier, but that's no big surprise.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
PATHOGEN DE-DISCOVERY

...There is also the issue of political sensitivity associated with the discounting of the work of a colleague and of the judgment of a funding agency or an advocacy group seeking solutions to a problem of medical, professional, or personal interest. It is not surprising, therefore, that journals are frequently reluctant to publish such work ["de-discovery"]. In my own experience with pathogens linked to affective disorders such as schizophrenia (75), chronic fatigue syndrome (46), amyotrophic lateral sclerosis (137), and autism (61), the process of bringing a refutation study to publication takes 1 to 2 years, with much of that time being devoted to finding an editor who can be persuaded of the value of the enterprise...

46. Evengard, B., T. Briese, G. Lindh, S. Lee, and W. Lipkin. 1999. Absence of evidence of Borna disease virus infection in Swedish patients with chronic fatigue syndrome. J. Neurovirol. 5:495499

I have a few questions:

1. What do people think of the other 'de-discovery' paper he did on "CFS"?

2. Why is he approaching this, the previous study he did on ME and the autism study as "de-discovery" rather than 'replication', "re-testing" or an 'attempt at confirmation' or some other neutral term and objective? He says he's 'agnostic', at least in his communication with the public (Prof. Racianello said on his blog that in a phone call Lipkin said things which I interpret as implying that this is not entirely true)

3. Why does he call these disorders 'affective disorders'? Is there any other meaning for the term other than 'mood disorder' (eg depression, anxiety, etc)?

4. Did he involve patient advocates in the process as he says that is important for buy-in? Who? Vernon?? I assume he is aware that CAA doesn't rep patients. do we need to make him more aware of this?

5. Since when is it so difficult to publish findings that 'de-discover' pathogens in ME or autism?? It's pathetically easy.
 

kday

Senior Member
Messages
369
I have a few questions:
1. What do people think of the other 'de-discovery' paper he did on "CFS"?
Worries me a bit, but I would like to see the full paper.

2. Why is he approaching this, the previous study he did on ME and the autism study as "de-discovery" rather than 'replication', "re-testing" or an 'attempt at confirmation' or some other neutral term and objective? He says he's 'agnostic', at least in his communication with the public (Prof. Racianello said on his blog that in a phone call Lipkin said things which I interpret as implying that this is not entirely true)

I agree. If he is trying to look neutral his choice of words is poor.

3. Why does he call these disorders 'affective disorders'? Is there any other meaning for the term other than 'mood disorder' (eg depression, anxiety, etc)?
It's either an error in the peer review process, a demonstration of ignorance, or perhaps (unintentional) demonstration of bias amongst him and his peers.

One thing I have learned from from this illness is not to trust anybody. Though I must admit, ignorance WAS bliss.

I don't claim to know if XMRV plays a role in CFS or not and I am not saying Lipkin is good or evil. Because of my experience with this disease and lack of trust that developed because of it, I find myself questioning everything. I think it's completely necessary. I am not swayed by smooth talk.

Is there anything in place to make sure that samples etc. are not tampered with (though I am not sure how that would be done)? It may sound paranoid, but we wouldn't want another one of these:

As a scientific necessity to compare it to the American version of HIV, French doctors representing the Pasteur Institute sent a colleague to the National Cancer Institute, where Robert Gallo was also working on the virus. The colleague switched the samples, Shilts reported, because of a grudge he had against the Pasteur Institute.[21] Instead of Gallo comparing his samples with the French samples, he found the very same retrovirus as the French sample, putting back any new results in AIDS research for at least a year.[22]

http://en.wikipedia.org/wiki/And_the_band_played_on
 

kday

Senior Member
Messages
369
I have insomnia tonight, but I started reading the paper on the Borna virus, and one thing jumped out at me.

Immunoreactivity to two or more BDV proteins was observed in nine out of 22 cases in the CSF-Severe group (40.9%) and in 18 out of 147 cases in the CFS- Mild group (12.2%, PS0.003) (Table 1).

The name CFS already bothers me enough, and what irritates me even more is when people (and medical journals) call the syndrome Cerebrospinal fluid (CSF). Ok, that was a bit irrelevant, but I wasn't expecting an error at one of the first sentences I (randomly) read. In fact, they called the syndrome Cerebrospinal fluid twice.

edit: Finished skimming it. Seems that patients were positive by ELISA but all negative by Western Blot. I guess b-galactosidase presence can indicate cross-reactivity.

They don't mention immune dysfunction. I believe a lack of an immune response that may be present in CFS patients could theoretically create a negative Western Blot. From a non-scientist perspective, I don't think this paper de-discovered anything, but someone please correct me if I am wrong. Not sure why Lipkin is so proud of it.

Numerical error spotted in Table 1 as well, and I wasn't looking for errors.
 

Doogle

Senior Member
Messages
200
I have a few questions:


3. Why does he call these disorders 'affective disorders'? Is there any other meaning for the term other than 'mood disorder' (eg depression, anxiety, etc)?

I don't know the answer to this but obviously amyotrophic lateral sclerosis and autism are not mood disorders. Seems like an incorrect choice of words.
 

Navid

Senior Member
Messages
564
i think tampering of the samples is a huge concern and wish a safety guard to how this will be prevented was presented to the patient population. we do deserve to know that this process will be fair.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
The two studies that found a link between Borna and ME were in Japan. Borna is usually found in ungalates like horses and sheep. However, Borna disease has never been reported in ungulates in Sweden. He studied Swedish ME patients because there had been an epidemic of encephalitis causing ataxia in pet cats attributed to Borna in the same area as a Swedish ME epidemic had occurred. (as Kday mentioned, his ELISA test was positive, but he chalked it up to cross-reactivity).

To his credit, he noted that the different results could have occurred because of geographic and other differences. But to his discredit, in the present paper, he calls his ME/Bornavirus study a 'refutation' which he claims was hard to publish (yeah, right!) since it was a "Pathogen De-discovery."

Regarding geographic limitation of encephalitis and myelitis:
Encephalitis usually occurs in clusters and is caused by different (often similar) viruses in different areas of the world. Most of them are arbo-(arthropod-bourne) viruses so the different arthropod species native to different areas may be the limiting factor in the spread of a particular strain of virus. For example, Japanese encephalitis, is basically limited to... Japan.

TSP-HAM, a multiple sclerosis-like myelitis caused by HTLV-1 is mostly limited to Japan, South America and the Caribbean. Note: the Merck Manual says HTLV 2 causes a variant of TSP-HAM. One of the retrovirologists, I think Coffin, has been saying that maybe XMRV is harmless in humans since not every human retrovirus causes disease, citing the example of HTLV 2. But, again, it does seem that HTLV 2 does cause disease. (though I don't know anything about whether HTLV 3 or 4 cause disease; not sure whether they are fully accepted as being human rvs; CDC (I think Switzer) found them in humans a few years ago).

Also, herpesviruses (esp HHV 1 and varicella zoster) and enteroviruses cause many cases of encephalitis.

Also, let me throw out a couple more random tidbits I just read: HHV 8 (cause of Kaposi's sarcoma in AIDS patients) is linked to NHLymphoma in AIDS patients. AIDS Dementia (evidenced by those "UBOs" on MRI identical to those in ME) is also called AIDS Encephalitis and is caused directly by HIV infection of the brain.

All this suggests two particular viral ME scenarios to this layperson:
(a) a new (or slightly mutated) herpesvirus, enterovirus, measles virus or other virus which typically causes encephalitis has emerged or
(b) a new co-factor (retro)virus has emerged that magnifies susceptibility and modifies expression (eg from acute to chronic) of preexisting encephalitis-causing viruses.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I agree with the concerns about the Lipkin study. That does not mean i'm paranoid or i don't trust Dr. Lipkin. I'm not even specifically thinking about somebody tampering with the samples, i'm worried about any potential influence that could distort the result, no matter of what kind. Any kind of error, incident, whatever. When there's so much at stake and people have set things up in such a way that this event is seen as decisive (which i don't agree with), then i think you need to take the necessary precautions.
 
Messages
13,774
I think they're being careful. It would be terrible if there was some error which meant the study were not carried out properly, but I suppose you could say that about lots of medical research. So long as they get the basics right, the results will be accurate, and I'm as confident as one can be that they will do. I don't think there's any reason to be concerned - other than the fact that it's important to us.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Of course you are entitled to your opinion, but i don't think in something as critical as this not having concerns or being confident is enough. A pilot will also walk around the plane and check everything and not just be confident in the mechanics or the manufacturer. The people in the Mikovits and Lo labs certainly are very experienced, but i hope they are aware of the potential risks and get heard enough to be able to make sure things go right.
 

Jemal

Senior Member
Messages
1,031
Well, there's some reason for concern. Read this:

http://www.theatlantic.com/past/docs/issues/2000/02/002bookchin.htm
http://www.cancer.gov/cancertopics/factsheet/Risk/sv40

It concerns a virus called SV40 that got into humans because of polio vaccinations. Although the first article is from 2000, there's a lot of stuff in there that I recognize from the current XMRV standoff.

I was rather positive about the Lipkin study, but now I am having some real concerns.

(Found these links on the ProHealth website)