News of replication of WPI XMRV study...

Sing

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Reply to Cold Taste of Tears

Thank you Cold Taste for your truthful rant--I identified a lot with your feelings and experiences. These words of yours particularly struck me:

" - because CFS is 'unexplained' chronic fatigue. Doctors take advantage of this, as well as patients, as well as health agencies. It's a free for all. An orgy of deceit....Currently it's a clown disease, and clown science.
My nose might be red, but I'm not jumping through hoops any longer to applause."

Like you, I too feel outraged by the fraud all around, but the only thing for it is to be stronger and clearer in my own honest presentation, and to support others who are being honest and courageous too. We are not being handed the keys to our jail cells by anyone yet but have to start ourselves with powerful, honest voices.

Cecelia
 
A

anne

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You know, I just understood something that I didn't before. I'd heard that sickest of the sick quote, but then their official sample seemed to say something else. But she says, "We simply did a screen of..." She used those samples to see if there was a virus. But the samples used in the study came from doctors all over the country and the only criteria used were the Fukuda and Canadian Definition. The interview above seems to say they looked for it in the worst samples, and to "confirm the finding," they did something more broad.

Dr. MIKOVITS: We simply did a screen of the sickest of the sick of our patients because we figured that would be where we would find the most virus. And lo and behold, there it was.

HAMILTON: To confirm the finding, Mikovits worked with a team of researchers to test blood from more than 100 patients with chronic fatigue, as well as more than 200 healthy people. They found XMRV in 67 percent of the sick people, but just four percent of healthy ones. Others tests showed the virus was infectious and was provoking an immune response in people with chronic fatigue.
The "simple screen" was preliminary.

Cold taste, yes.
 

dannybex

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You know, I just understood something that I didn't before. I'd heard that sickest of the sick quote, but then their official sample seemed to say something else. But she says, "We simply did a screen of..." She used those samples to see if there was a virus. But the samples used in the study came from doctors all over the country and the only criteria used were the Fukuda and Canadian Definition. The interview above seems to say they looked for it in the worst samples, and to "confirm the finding," they did something more broad.



The "simple screen" was preliminary.
GOOD POINT! Thanks for the clarification.
 
A

anne

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I seriously didn't understand it until looking at that interview, and had been really puzzled by the contradictory information that seemed to be coming from the people who actually did the study. So I'm really pleased you posted that. :)
 

Marylib

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For Cold

Well said Cold. I think we can put that post in our "classics". If we had one of course.

By the way, I loved the part about the bit of compassion shown to you by the drunk, offering his bed and all. Would be nice if compassion were contagious.
 
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Hello,

Im a swedish guy with CFS/XAND and like most of you I try to follow the XMRV-development. Searching the net I came across some quotes from Judy Mikovits, first:

"We also have data showing that the virus attacks the human immune system," said Dr Mikovits. She is testing a further 500 blood samples gathered from chronic fatigue patients diagnosed in London.

"The same percentages are holding up," she said.

http://www.nzherald.co.nz/health/news/article.cfm?c_id=204&objectid=10602278


and this one from a local Reno paper:

"Mikovits said the Whittemore-Peterson Institute is working with officials in other countries who want the blood samples of their patients tested for the retrovirus.
“We’ve got about 500 samples from the United Kingdom, and we also were approached by the head of the the syndrome organization in Spain,” she said. “We eventually expect to collaborate with many other countries: Norway, Germany and others. Everybody is asking if we can test their samples and asking how they can get in the clinical trials.”
 

Marylib

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Welcome Smulan

Welcome "Swedish guy" :)

It will be great to have your perspective here on the forum. Tis a small world...
 

fds66

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There are some statements about the samples used on Whittemore Peterson's own website.

From http://www.wpinstitute.org/xmrv/xmrv_qa.html

# NEW Who were the patients and healthy controls in the recent XMRV study published in Science? [view answer...]

Every patient sample used in the study (taken from the nationwide WPI repository gathered from several regional physician practices) had a physician's diagnosis of CFS. To further validate the samples, the research team used the well-established CDC and Canadian Consensus Criteria for CFS in every case. The healthy controls were healthy people who came to a doctor's office for a routine sample or from DNA used in routine diagnostics.

In order to meet legal human assurance requirements, identifiers for the control population are not available to the investigators. Nor was additional information on the patient samples used in this study. Age, sex, duration of illness, medical history and medication use have no impact on the identification of a new human retroviral pathogen.
# NEW Would having other details about the patients impact the ability of others to replicate this work? [view answer...]

No, but one must have the appropriate testing methods and tools to replicate. Retroviruses do not discriminate based on age, sex or any other characteristic listed. Additionally, because the healthy controls were zip code matched, as well as age and sex matched, no further information on the controls is needed.

These CFS patients have a diagnosis of CFS as described by the Canadian Consensus and CDC definitions. There is nothing unique about these patients. In this research 67% of the study group had an active infectious retrovirus in their blood versus 3.75% of the healthy controls.

The scientists who refereed this paper concluded that we met every scientific and clinical criterion with the rigor required by a journal with the highest standards in the world. Science and its referees understand the importance of the finding that a new human retrovirus is infectious and transmissible and highly associated with CFS.

Future research will look at prevalence among population groups, transmissibility, interaction with medications, impact of the duration of a CFS diagnosis on the activity of XMRV, and a wide variety of other factors. We are all interested in these results, as well as treatments studies to determine best management of infections.

This is a very serious public health concern: 3.75% of the healthy controls (which would translate to 10 million Americans) in this study were infected with a newly described retrovirus of unknown pathogenic potential.
FRom http://www.wpinstitute.org/research/research_biobank.html

Where did the samples come from for the XMRV study? [view answer...]

The WPI repository samples came from patients who live in many different locations around the US. Physicians who contributed patient samples include: Dr. David Bell, Dr. Paul Cheney, Dr. Daniel Peterson, and Dr. Eric Gordon. Other individual patient samples came from individuals who became ill while living in California, Wisconsin, South Dakota, etc.
Were any patients with lymphoma mentioned in the XMRV study? [view answer...]

Blood samples from the WPI repository were chosen at random and there were no patients chosen with lymphoma or mention of lymphoma in this study. Another preliminary study was done at a later date that had nothing to do with the XMRV Science publication.
How were the patients diagnosed? [view answer...]

Patients were physician diagnosed using the Canadian Consensus criteria and the CDC criteria and after exclusion of other inflammatory and autoimmune diseases.
I was confused too for a long time about statements about picking only severely affected people but this seems to suggest they were random samples from their biobank.

Hope this information is helpful to someone. It took me ages to remember where I'd seen the phrase "chosen at random"
 
K

_Kim_

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Hi Smulan

You're just in time. I was trying to read Frn ME/CFS-seminariet p UMAS i Malm 12 november., a report about the lecture given by Dr Byron Hyde and Kenny de Meirleir in Sweden on November 12th.

I used Google translator to read the report, but it wasn't very helpful in understanding what de Meirleir said about XMRV. Would you do a little translation on that part for those of us who don't speak Swedish.

Thanks (and welcome!),
Kim
 
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You're just in time. I was trying to read Frn ME/CFS-seminariet p UMAS i Malm 12 november., a report about the lecture given by Dr Byron Hyde and Kenny de Meirleir in Sweden on November 12th.

I used Google translator to read the report, but it wasn't very helpful in understanding what de Meirleir said about XMRV. Would you do a little translation on that part for those of us who don't speak Swedish.

Thanks (and welcome!),
Kim
Thanks Kim!

Here is a try sum up the essential in prof. Kenny de Meirleirs lecture.

First he talks abot the history of the CFS/ME and where we are today. Even though there are over 5000 studies that shows that ME CFS is a biological condition still many belive/argue that is a psycological condition. That has never happen before with any other condition!

Science today looks on gene expression, proteins and infections. He dont belive that there will be a single explanation for CFS/ME.

When it comes to treatment he thinks that dr Enlanders study (note yet published) is the most interesting right now. This treatment include B12, Folatic? acid and Kutapresin. 63 % felt better compared to 17% in placebo.

Then he talks about food, genetic etc that ends up in a conclusion that many people with CFS/ME gets higher than normal levels of a toxic gas H2S in the stomac. This gas has a negative effect on the blood abillity to transport oxygen and it can be messured in the urin with a simple neurotoxic metabolit test. Me/CFS patients often has elevated levels of this gas and tests that has been done in Norway on very sick people veryfies this.

On the recent XMRV finding Meirleirs states that it is to early to say if it is the virus itself that cause CFS or if its there becuse of some problem with the immune system. We have to wait and se near future studies on this he says.
 
A

anne

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And besides we already know that there are distinct cohorts, for instance, those in Incline Village or Lynbrook got sick in outbreaks that looked like bad flu's from which they did not recover. Those outbreaks suggest a highly contagious organism.
Other people have had slow insidious onset. And sometimes family members come down with it and sometimes they don't.
That doesn't look like the same entity anyway.
This is rampant speculation, and I have no grounds for any of it. But isn't part of the attractiveness of XRMV that it can explain some of the different manifestations of this disease? Because it affects the immune system, which then allows in other pathogens that cause different problems in different people?

I'm offering anecdotal evidence here, and it's only in the spirit of anecdote. I had CFS before I met my husband. I had a relapse while we were married and recovered in 2005. He was diagnosed with mono in April 2008 and hasn't gotten better. I clearly gave him CFS somehow. Our cases, though, are pretty different: I had VERY gradual onset and he had the flu-like onset. I had horrible orthostatic symptoms and he has none. But our key labs--RNAseL numbers, NK cell counts--are very, very similar. Somehow, the way the causal agent works (whether XMRV or no) created differences in the way the disease manifests.

Again, purely anecdotal.

I have no idea if any of these rumors--that there is a consensus and confirmation of results not yet published; or that the results aren't panning out--are valid.
So we just have to say at this point they're all rumors. Might as well report them and just patiently wait.
You are right, but I'm going to choose to wait impatiently!
 

fresh_eyes

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I have no idea if any of these rumors--that there is a consensus and confirmation of results not yet published; or that the results aren't panning out--are valid. So we just have to say at this point they're all rumors.
The fact that a new CFS/XMRV task force was formed at HHS in recent weeks makes the rumors that point toward confirmation more plausible, imo. Wanda Jones said sometimes there are 50 people on their conference calls - surely not talking about what a flop XMRV is turning out to be.
 
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Well

There is so much here to comment on. And I am not very alert mentally.

But let's see.

First, I am glad they chose the sickest of the sick. As someone here said, many with diagnosis of CFS will not have a virus cause to their illness. Plus, it is possible that maybe this virus can also go into a latent or dormant stage. And the person may have CFS symptoms from the aftereffects, say an immune system gone awry, even though XMRV has been brought under control. One might expect that that person would not have the symptoms as severely as someone in an active XMRV infectious state. So, you could say that if WPI chose any patient with a CFS diagnosis, then the results would MORE skewed because they would have included ones with other illnesses, including psychiatric ones. And they would have included people who have the aftereffects, which would not help them in finding the virus, which was their goal.... see if the virus is there. This way, the only used ones with indisputable, true CFS and show signs of an active infection, if there is an infectious cause. They didn't include the cancer ones either. So the "not panning out" may be that others are using the broader definition in the cohort or those who had an infection, but not at the moment. Also, usually, they will separate them out in doing the study, usually in groups of 20-35. Then they will keep up with the results in the subgroups. I know CDC claimed it is including some WPI samples in their study. So they may see different results in the WPI samples than the ones of their own collection. But that should be documented.

Second, I would expect the CDC and other government agencies using the broader definition for their cohort will find a higher incidence of XMRV in their collection than healthy controls, but not as high as the cohort in the WPI study. Maybe they find 40% with active virus...?

Third, the study has already been verified by National Cancer Institute and Cleveland Clinic. They were co-authors, that means they banked their reputation on the information. So, there is definitely something there at an increase in the sickest of the sick of "CFS" patients. Cause not established, but definitely a retrovirus in greater incidence among them than healthy controls.

Now, remember this, as DeFrietas knows, viruses are not that easy to find in a microscope. It's not like you take a sample, put it under a microscope, and if the virus is there, the person has it and if they don't, the person doesn't. Ability to find a virus is determined by the level of infection. So narrowing to the sickest of the sick saves time and money. They are the ones who likely have more of the virus, thus it will be easier to find it, if it is there. Especially if a virus can go dormant, or the immune system has a response to it, you have to look for it. Think of how long it took them to find HIV in the blood of people with AIDS. Common sense would seem to indicate that you take the blood of an AIDS patient, put it under a microscope, and you should see, "Hey, there's a new virus in this person's blood that I haven't seen before." That's not the way it happened because viruses are very elusive. You can look at 100 cells and it not be in any of them, then you look in the next one and there it is. It's like looking for a needle in a haystack for some viruses. And as Defreitas said, some viruses will show in the blood for six days and then disappear. So this is not a simple, clean science. Even pap smears have probabilities of false negatives and false positives. Take that into account when the results for other researchers come in.

Tina
 

dsdmom

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We understand this and that's all that matters. Lets get these blood tests back, see how it works out and get access to an immunologist and some medications - finally.
Cold Taste of Tears, I definitely appreciate your thoughts on this. My only concern is that if the new studies do not replicate the WPI findings as far as percentages, a causative relationship will not be pursued. I would then envision that docs won't treat XAND even if you are XMRV positive because it will be said that "healthy controls have XMRV and therefore it could not be causing your problems."

So that even if we know we are xmrv positive and it is causing our problems, the medical community at large will not act on it because the studies did not show causation. Which would also mean that drug development, etc would not happen. Sure if you could find a doc to use existing drugs on you that is a possibility, but again, only if they, too, are convinced outside the studies that XAND exists.

So I hate to say it, but I think we do need these studies to come back as WPI sees it if we want treatment and/or drug development. And it scares me to know the types of samples they are testing. And the rumors that are circulating already that studies are not jiving with WPI's results.
 

PoetInSF

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# NEW Who were the patients and healthy controls in the recent XMRV study published in Science? [view answer...]

Every patient sample used in the study (taken from the nationwide WPI repository gathered from several regional physician practices) had a physician's diagnosis of CFS. To further validate the samples, the research team used the well-established CDC and Canadian Consensus Criteria for CFS in every case. The healthy controls were healthy people who came to a doctor's office for a routine sample or from DNA used in routine diagnostics.

In order to meet legal human assurance requirements, identifiers for the control population are not available to the investigators. Nor was additional information on the patient samples used in this study. Age, sex, duration of illness, medical history and medication use have no impact on the identification of a new human retroviral pathogen.
The continued unavailability of patient sample profile baffles me. True, their samples may meet Fukuda/Canadian criteria. But they are not random samples from Fukuda/Canadian CFS population. They are selected from outbreak areas and therefore it is Fukuda/Canadian/WPI criteria, not Fukuda/Candian. Seems to me, it's better to suppy them to preempt any controvery with other replication studies later on.
 

Esther12

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The continued unavailability of patient sample profile baffles me. True, their samples may meet Fukuda/Canadian criteria. But they are not random samples from Fukuda/Canadian CFS population. They are selected from outbreak areas and therefore it is Fukuda/Canadian/WPI criteria, not Fukuda/Candian. Seems to me, it's better to suppy them to preempt any controvery with other replication studies later on.
What I understood from the posts here was that the WPI had initially focused on outbreaks to identify XMRV, and had then moved on to random samples from Fukuda/Canadian to test the connection.

Previously I'd thought the entire research had been focused on those from outbreaks of CFS though, and I may have just misunderstood this thread.
 

MEKoan

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What's the basis for the rumors? I haven't seen anything besides word of mouth on here, and it's a waste of energy to comment on such rumors.
I agree. We could get a good rumour going right here if something passed through a few threads and a few heads it would start to have legs.

:rolleyes: