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First Public Presentation by WPI Researchers

MEKoan

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I got sick in 1979 in Toronto, Ontario. There was no word of anyone at all getting what I got but me.

I was shocked, years later, to discover that a whole bunch of people in Nevada came down with exactly what I had. Exactly.

There has never, to my knowledge, been an outbreak in Toronto.

Maybe I don't harbour XMRV. I will have to be patient. I still believe that those felled in epidemics -who had exactly the same onset, findings and illness course as I do- have the same thing I have. Studying XMRV, whether I have it or not, can only help me.

I was in an area where there were outbreaks of ME during those outbreaks. I was born in a hospital in London, one week to the day following the beginning of an outbreak of ME among the nursing students and lived in the city during one or two subsequent outbreaks.

But, I had the classic viral onset, followed by reactivated EBV... more than 20 years later in Toronto.

What we don't know outpaces what we do know. We will have to be patient.

I'm not engaging in speculation about these things, personally. I would just end up riding the emotional upsidaisyum. I'm not going there. Time will tell.

peace out,
Koan
 

Cort

Phoenix Rising Founder
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I think for the reasons that outbreaks have kind of faded is that it's pretty clear at least a physicians that there really isn't a difference - at so far as they can tell in an 'outbreak' versus a 'non-outbreak' patient. In fact none of the physicians that I've seen differentiate between gradual onset and infectious onset patients and I've never read that the physicians say that there is a substantial difference between them (except perhaps Peterson).

When Mikovits says 95% of ME/CFS patients I'm assuming that she means the typical patient- ie someone who experiences postexertional malaise. She had her infectious onset patients from Dr. Peterson's practice but then she had her other study participants from several other practices plus she's done at least several hundred more tests since then. Based on that I gotta think that it applies to most of us. I certainly hope so. Only time will tell. (I wonder how much time?)
 

Nielk

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I have an appointment on Thursday with Dr. Enlander to draw blood for his study with Dr. Kerr on XMRV. I have no idea ow long it will take. I also don't know, as a patient, will they tell me my personal result?
 

Rrrr

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transcript or video

i called the school that hosted the talk yesterday and asked when the transcript or video would be out. rachel said she'd call me back today with the answer. not sure what it will be, of course. the organizer of the talk was a woman named staci stevens: sstevens@pacific.edu

the point person on the original press release, rachel wolf, is leaving in one week for another job. so i guess staci will be the decider on the video.
 

Jim

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Results

I have an appointment on Thursday with Dr. Enlander to draw blood for his study with Dr. Kerr on XMRV. I have no idea ow long it will take. I also don't know, as a patient, will they tell me my personal result?
i believe u will not get to see your results. i think i read somewhere recently that dr. kerr will not release results as to whether or not u have xmrv.

he also never released the gene expression results.

good luck!

jim
 

Nielk

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It makes the arduous trip into the city much less exciting. But, I guess it's for the greater good if they come out with a quality replication of the study.

thanks Jim
 

Rrrr

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just got a call back from rachel, the point person on the original press release about this WPI talk.

her boss staci went to wash dc for a conference (maybe the CFS one?), and won't be available to do anything about a transcript until then.

but then rachel said she asked her other boss, Christopher R. Snell, Ph.D.
csnell@pacific.edu, and he said that since new info came out in the talk, WPI asked them to not publicize the contents of the talk for 1 week, so they would have time to get the word out to the places they should, first.

but that in one week's time, they hope to have the video on yesterday's talk available to all on their website.

this is their website:
http://web.pacific.edu/x31823.xml
 

Jim

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Not Certain

It makes the arduous trip into the city much less exciting. But, I guess it's for the greater good if they come out with a quality replication of the study.

thanks Jim
just to clarify, i am not certain that u would not get your results. give it a go and see. dr. enlander seems to be one who wants patients to see results. dr. kerr seems to be the speedbump.

anyway, good luck!

jim
 
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just got a call back from rachel, the point person on the original press release about this WPI talk.

her boss staci went to wash dc for a conference (maybe the CFS one?), and won't be available to do anything about a transcript until then.

but then rachel said she asked her other boss, Christopher R. Snell, Ph.D.
csnell@pacific.edu, and he said that since new info came out in the talk, WPI asked them to not publicize the contents of the talk for 1 week, so they would have time to get the word out to the places they should, first.

but that in one week's time, they hope to have the video on yesterday's talk available to all on their website.

this is their website:
http://web.pacific.edu/x31823.xml
Great info rrrr - thanks. I'm very intrigued as to what new info came (slipped?) out that it's going to take a week for them to "get the word to the right places first."

I will not speculate.

But maybe I'll ask. Levi, or any of the others who made it there, do you have any idea what the new info is?

islandfinn
 

garcia

Aristocrat Extraordinaire
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I have an appointment on Thursday with Dr. Enlander to draw blood for his study with Dr. Kerr on XMRV. I have no idea ow long it will take. I also don't know, as a patient, will they tell me my personal result?
I spoke with Dr Kerr and he told me that people won't be told their results, but do check with Dr Enlander on that and maybe let us know what he says.
 

Alice Band

PWME - ME by Ramsay
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Garcia,

Sorry to bump into this thread. Did Dr Kerr say anything else about the London samples tested for XMRV by any chance? This was reported in the Independant Newspaper.
 

garcia

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Garcia,

Sorry to bump into this thread. Did Dr Kerr say anything else about the London samples tested for XMRV by any chance? This was reported in the Independant Newspaper.
He was talking about the upcoming replication studies (e.g. Enlander's patients). I didn't ask him about past studies.
 

Marylib

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Koan, was it Royal Free Hospital?

Hi Koan,

Are you a Royal Free baby? If so, save some blood.

I am just thinking that somewhere down the line, people will be interested in finding out what happened to babies who were there at the time of that epidemic.

Ha ha...well, it is truly funny how I dream up all sorts of projects and studies for other people to do when I am wondering how it will go when I try to drive a car today....wish me luck.

Marylib
 

MEKoan

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Hey Marylib,

No, I'm a Middlesex baby; there was a small outbreak there in 1952. Royal Free was, I believe, 1955. I also seem to remember hearing about another small outbreak in 1957 but I could be wrong about that one. We left in '57 so I was certainly in a geographic location where it was an issue at one point in my life.

Good luck driving! Watch out for those "bloody lupins!"

peace,
koan
 

dannybex

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1957...

I think the 1957 outbreak was in Punta Gorda, Florida. My parents lived in Florida (where I dont' know) for about a year, but that was in 1953-54.

deeep breath. :)
 

Advocate

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Report on Mikovits grand rounds at U. of Florida

Google just alerted me to this press release from the College of Medicine at the University of Florida that describes Judy Mikovits' grand rounds there last Thursday. I like the cancer angle. Theres a nice photo of Dr. Mikovits.


http://news.medinfo.ufl.edu/article...-fatigue-syndrome-cancer-linked-to-new-virus/
-----------------

Here are some excerpts, but the entire article is well done:

Chronic fatigue syndrome, cancer linked to new virus

By CZERNE REID
Published: November 3rd, 2009

A newly identified virus has been found to be linked to chronic fatigue syndrome and might also provide clues about how to prevent prostate cancer...
.................
Judy Mikovits, Ph.D., senior author of the paper, described the research during grand rounds at the University of Florida College of Medicine Thursday, Oct. 20. She was a guest of the division of hematology/oncology.

This discovery opens a new area of medical possibilities for people who have a condition that has baffled doctors and researchers for years, and gives an insight into potential prevention and cures of cancer.

..............


Chronic fatigue syndrome sufferers relatives who had been diagnosed with neuroimmune diseases such as atypical multiple sclerosis, fibromyalgia and autism also tested positive for the virus, though these data were obtained after the publication and are still preliminary.

..........

Mikovits also showed preliminary data that CFS patients in the study who subsequently developed cancer, primarily lymphoma, all tested positive for the XMRV. That raises the possibility that treating the virus could ultimately prevent many cancers, she said.
..................

It opens a new path for understanding the pathogenesis of cancer, said Carmen Allegra, M.D., chief of hematology/oncology at UF College of Medicine.

Researchers say the level of XMRV infection revealed in the study is not just a concern among people who have chronic fatigue syndrome, but is a public health issue as well.

This is the discovery of a new virus that doesnt have any treatment, affects 4 percent of the population and has a transmission that seems to be easy, Allegra said.

Researchers continue to seek answers to many unanswered questions about the virus, including how it got into the human population, how it acts to cause disease and whether the virus alters the risk of cancer development in people who have chronic fatigue syndrome.

Theres quite a bit of work to do to understand the risk associated with this, said Nam Dang, M.D., Ph.D., deputy chief of hematology/oncology.
 

fds66

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but then rachel said she asked her other boss, Christopher R. Snell, Ph.D.
csnell@pacific.edu, and he said that since new info came out in the talk, WPI asked them to not publicize the contents of the talk for 1 week, so they would have time to get the word out to the places they should, first.

but that in one week's time, they hope to have the video on yesterday's talk available to all on their website.
Has anyone heard about this video recently?