"It is (ME/CFS) like some great constricting snake that denies its victims the final convulsion." Llewellyn King

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.

Thursday, April 29, 2010

European ME Alliance calls for Europe-wide ban on ME/CFS blood donors


"After Canada, Australia and (in all probability) New Zealand have prohibited people who have been diagnosed with ME/CFS from donating blood the European ME Alliance (EMEA) has written to European health ministers and Chief Medical officers requesting that a similar ban be placed in European countries."

Read entire article here:

EMEA Calls for Blood Donor Bans

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Saturday, April 24, 2010

Fed's Ramp Up on XMRV Study?

First, there was this article from the WSJ on April 4th, which got through my 'has merit to post' filter. It discussed  the isues surrounding blood safety and XMRV, and at the end, it discusses major objectives of the XMRV working group:

"The federal working group's project has three phases. First, labs at six participants—including the FDA, the National Cancer Institute, the CDC, and the Whittemore Peterson lab—are using a panel of blood samples to try to establish which of the labs' tests are sensitive and reliable enough to find XMRV in the blood. Results are expected in a few weeks.

In the second phase, also launched, a panel of around 350 different blood samples developed by Dr. Busch's team will be sent to four different labs. Some of the samples are from chronic fatigue patients known to have XMRV. Others from healthy donors have been spiked with the virus or have tested negative. All the samples are blinded, and the study will see whether the different labs can agree on XMRV positive status for chronic fatigue patients.

"There is a balance to what we are doing," says Simone A. Glynn, branch chief of transfusion medicine and cellular therapies at the National Heart, Lung and Blood Institute and chairperson of the XMRV working group. "You do not want to transfuse an infectious agent that causes problems. But you do not want to take blood out of the system that is not causing any problems."

A third phase may be launched later, using frozen specimens in federal repositories dating to the 1970s. These repositories link donors to recipients and will allow researchers to see if XMRV was transferred in transfusions and help determine prevalence in the past as well as today, as well as geographical clusters or associations with age and gender.

Now, there is this article from Cort of Phoenix Rising from April 9th:
XMRV’s Big Test Has Begun: The Fed Study Ramps Up
He details what is involved in those phases.

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The Devestation of a Disease - A Lifers Statement

Her story speaks to my own, and over 1-3 million others who suffer from CFS/ME.  Thank you Lisa for sharing your experience, and Khaly Castle for hosting it.

Khaly, from CFS UnTied:

"This was written and posted by Lisa Simpson, who gave generous permission for us to share it here. While government obfuscates and pontificators pontificate, this is what’s happening to an entire population of dreadfully sick people."

The Devestation of a Disease - A Lifers Statement

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Monday, April 19, 2010

Anthony Fauci: How not to be a scientist

This is a re-post from 9/23/2009, written by Hillary Johnson. Anthony Fauci has been the director of the NIAID since 1984.  It's just outrageous to me that men such as Fauci were/are continued to be allowed to speak on the behalf of PWC's.

Quoted from Hillary Johnson's re-post on Osler's Web: Anthony Fauci was....

"The person who advised NIH director Harold Varmus in 1999 to move “chronic fatigue syndrome” out of NIAID and into the dead zone of the ineffectual and unfunded Office of Research on Women’s Health at NIH, a stunningly irresponsible and cynical decision. Fauci made this move on the heels of a General Accounting Office report critical of the NIH's history in "cfs.""

PLEASE read the rest of the re-post. 

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Saturday, April 17, 2010

XMRV Found in Dutch Patients

"English Translation for Ortho web post by Toine de Graaf

1. This is not approved by the author, but was translated by Monique Drost and edited by Heidi Bauer. All effort has been made to stay true to the intention of the author while making sentences grammatically correct in English.

2. Ms. Drost changed the name of the place Nijmegen into UMC St. Radboud (the hospital that facilitated this research), because she would have to use Dutch conjugations like Nijmeegs, Nijmeegse and Nijmegen, and she felt that would be a bit confusing for readers.


- Orthomolecular magazine

Ortho no. 2, sent today to subscribers, contains once again an article on the retrovirus XMRV and the relationship to ME/CFS. However, recent developments couldn’t be included in the article, hence this web publication.

By Toine de Graaf

Latest news – ‘UMC St. Radboud’s’ blood XMRV-positive after all

Gendringen, the Netherlands – April 16th, 2010. Researchers from the UMC St. Radboud announced in February that they didn’t find the XMRV virus in the blood of Dutch Chronic Fatigue Syndrome (ME/CFS) patients. However, they left out that American researchers did find the XMRV virus in blood samples, taken from the same patients.

This is concluded from a letter that Annette Whittemore, director from the Whittemore-Peterson Institute (WPI) in Reno, sent on Monday, April 12, to Dr. Myra McClure (1). Dr. McClure is a professor in retrovirology at the Imperial College, London, and one of the authors of the first negative “replication study” for XMRV contamination with ME/CFS (2). In her letter, Whittemore invited McClure to co-operate with the WPI to research XMRV. She also reveals some information on the other two negative replication studies that have been produced so far, including the UMC St. Radboud study.

Email correspondence

The experimental virologist Dr. Frank van Kuppeveld from UMC St. Radboud and internist doctor Jos van der Meer didn’t find a trace of XMRV in the frozen blood of 32 Dutch CFS patients, taken in 1991 and 1992. Also, in the blood of 43 healthy control subjects they didn’t find the retrovirus. They published their findings online in the British Medical Journal (3), late January.

However, in her letter, Whittemore points out that the WPI, at the request of van Kuppeveld, has tested some blood samples from the Dutch research cohort before the study at UMC St. Radboud was completed. The WPI found traces of XMRV in those blood samples. Whittemore claims she possesses over email correspondence, which proves that van Kuppeveld was informed about these WPI research results before he published his negative study. However, in his scientific publication, no word is spoken about the co-operation with WPI (3). The redaction at Ortho has requested a copy of the email correspondence with UMC St. Radboud from Annette Whittemore, but this request has not (yet) been honoured.

Furthermore, Whittemore writes in her letter that van Kuppeveld has asked WPI for the reagents and a positive blood sample to determine if his test procedure was able to detect XMRV in positive blood. The WPI met that request. In her letter, Annette Whittemore questions why he didn’t use these materials in his research.


Annette Whittemore’s letter raises a lot of questions concerning the UMC St. Radboud XMRV study. The most pressing question is whether Van Kuppeveld can confirm WPI’s findings. And if so, how many blood samples were sent from the Dutch research cohort to Reno, and how many positive samples did WPI find? And last, but not least, why did the UMC St. Radboud researchers keep silent about all of this in and around their research publication in the British Medical Journal?

Last Wednesday, the redaction of Ortho called virologist van Kuppeveld after emailing him Annette Whittemore’s letter. During the call, he declared he had never seen that letter before. Van Kuppeveld also said he wasn’t able to respond on such short notice. “I will first have to study the letter, and at least discuss this with my colleagues, who might be out of the country right now,” he said.

However, after some urging, van Kuppeveld confirmed Whittemore’s findings. He says that the case is slightly more complicated then the letter assumes. According to him, one or more of the 43 healthy control subjects from the UMC St. Radboud cohort has been positively tested on XMRV by the WPI. In conjunction with the findings of van Kuppeveld, this has raised some questions concerning the reliability of the WPI methods. Besides this, he has also stated that he had requested more samples from WPI, but has never received more than one XMRV positive sample.

Seven blood samples

Searching for answers, we contacted Dr. Judy Mikovits yesterday. She is the research director for WPI and leader of the XMRV research. She gave us several answers during a telephone interview. “Frank Van Kuppeveld has sent us seven samples”, Mikovits said. “They were numbered 1 to 7. It was about cDNA, that he had made out of RNA”.

WPI tested these seven samples with advanced PCR techniques in a closed system, so that contamination was impossible. Three samples appeared to be positive. After they reported the positive numbers to UMC St. Radboud, a message was returned, saying it concerned 2 patients and one control subject. For Mikovits, this result was expected. “We never were informed how many control persons there were on those seven samples, but two positives in seven is approximately what I expected. I didn’t count on a 100% score, especially not with PCR.

That one control subject has been found positive by WPI was no surprise to Mikovits. “It totally depends on where you get the blood.” At BMJ the UMC St. Radboud researchers have declared that the control samples were taken from people from the same environment as the patients. “The positive control subject is no surprise if it concerns family or a care taker. Control subjects that come with the patients to give blood we call contact-controls. Some of these people might be infected.”

It is a fact that XMRV has been discovered with healthy persons. With WPI’s own Science Research, in a group of 218 healthy control persons, showed that 8 people had a positive XMRV test (3.7%) (4).

No replication

Judy Mikovits and her colleagues are disappointed that the UMC St. Radboud research group has stated nothing about the co-operation with WPI in the BMJ publication. “During a month, we contacted each other at least every 3 or 4 days,’ she said. “Material went back and forth, including co-operation agreements, signatures.” She felt van Kuppeveld was keeping her on her toes. “He was very strenuous and kept asking whether I had received, tested or looked at stuff.”

About a week before the BMJ published the UMC St. Radboud online, the communication fell silent. “That was after I had sent the positive results,” said Mikovits. “I considered it to be good news. You’ve got something to work with. But Van Kuppeveld didn’t consider it good news, because they didn’t find anything. His message was, on your side, there must have been contamination. Even though I got his material, I was speechless. That was the end of our contact. A week later their publication followed.”

Mikovits finds it unbelievable that the UMC St. Radboud researchers haven’t used the material they got from WPI in any way. They did claim to have done a replication study. “We sent them antibodies, positive serum and positive DNA,” said Mikovits. “Van Kuppeveld could have cultivated his samples, just like we did in our Science study. They could have tested their plasma for antibodies and they could have used our reagents to search for proteins and that kind of stuff. But they didn’t, and have also mentioned nothing about the possibilities to do it. We would have wanted Van Kuppeveld to report all the data. If there is a difference in opinion or a misinterpretation, you can look at it together. They could have adjourned the samples, and worked together with us. But you can’t just create the appearance to the outside world that nothing happened.”

In retrospect, van Kuppeveld and his colleagues only were interested in the PCR technique, while Mikovits assumed that at the UMC St. Radboud the entire Science study would be replicated. “I had no idea he didn’t want to do the rest of the research. That totally surprised me.“


The WPI kept silent until the beginning of this week. Mikovits suspects that Annette Whittemore was triggered by the statements Dr. Myra McClure recently made on television, where the British retrovirologist disregarded the meaning of XMRV with ME/CFS. After this, Whittemore decided to enter the arena with this letter. “For a long time we thought the best way to deal with this was to continue with the research and forget about the lies. What else can you do? We got seven samples, we did our jobs and reported honestly what we found.”

Mikovits confirmed that van Kuppeveld requested more samples. “I wanted to send him more, but what would he have done with it? Find out they were negative and say bad things about it? Mikovits is determined to walk the XMRV-route further, and she sounds more motivated than ever. “We’ve isolated a virus, and we displayed from a hundred people how their immune system is reacting. Did you know that there is no immune response to a contaminant? The patients obviously are infected with a virus.”

Mikovits isn’t the only one that takes XMRV seriously. Previously this month it was announced that in Canada people with ME/CFS aren’t allowed to donate blood. Canada is the first country in the world that has taken this precaution.

1. Whittemore A, Dear Dr. McClure, April 12th 2010 (www.wpinstitute.org)

2. Erlwein ), Kaye S, [..], Cleare A. Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS ONE 2010; 1e8519
3. Van Kuppeveld FJ, de Jong AS, [..] van der Meer JWM. Prevalence of xenotropic murine leukaemia virus-related virus in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort. BMJ 2010 340:c1018
Lombardi VC, Ruscetti FW, [..]. Mikovits JA. Detection of an infectious retrovirus, XMRV, in blood cells of patients withCFS/ME
Further information (in Dutch):

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Thursday, April 15, 2010

Ontario Makes CFS an Official Neurological Illness

Never thought I'd see this, and I quote:

ME/CFS Given Official Recognition by Ontario Government!

"This means that no one in Ontario who suffers from ME/CFS can ever again be told by a doctor that ME/CFS does not exist. If they do, tell them to look up Diagnostic Code 795.

'Chronic Fatigue Syndrome' has been given the OHIP Diagnostic Code 795 by the Ontario Medical Association as a Neurological Illness!" 

It must have been the...

.•*¨`*. ¸.•*¨*.¸¸.•*¨`*• ƸӜƷ
*.* .♥¸.•'`♥ƸӜƷ Positive Pixie Dust! ƸӜƷ
. . * . * . * . .•*¨`*. ¸.•*¨*.¸¸.•*¨`*•

Edit: Iirc, I think I heard this is not a recent development, but happened within the last 2-3 years. Even so, It's still encouraging to know.

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Tuesday, April 13, 2010

Annette Whittemore, CEO and Founder of WPI, responds to Dr. McClure

Remember this? 

Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome 

It was the first published article from the UK announcing findings in PLoS ONE regarding a XMRV/CFS research 'study'.  It was a very disappointing report and contained errors that even a brain addled PWC as myself could spot.  We all knew it, and I was dumbfounded why it was even published? Why would any scientists want to attach their names to something so technically impaired? It just did not make any sense.  Their study results were:

Received: December 1, 2009; Accepted: December 4, 2009; Published: January 6, 2010

See anything unusual here? The WPI, the CC and NCI published their XMRV in CFS patients discovery findings in Science on October 9, 2009 after a rigorous peer review of 6 months.

So, we were expected to believe that they (Dr. McClure and UK team) somehow managed to 'not verify' (I will not use the 'replicate' word, as they failed to follow the steps required for an authentic replication study)  the discovery of XMRV in CFS patients after less than two months? Then, it was received By PLoS ONE on December 1, and accepted December 4th? So... yeah.  A peer review of 3 days? Really? Politics aside, this was just such a technical failure from the start it should have never even been considered for publication. 

Yesterday, WPI addressed the 'science' behind the UK's published study. I received authorization to post this correspondence from Annette Whittemore, CEO and Founder of WPI, to Dr. McClure. You can also find it here, on the current news page on WPI's website.

NOTE: If you have already read the letter, jump to the end of this post for a quick conclusion by this blogger.

April 12, 2010

Dear Dr. McClure:

On behalf of the Whittemore Peterson Institute in Reno, Nevada (“WPI”), I am writing you today to ensure that there is direct communication between WPI and your research team. You may share this letter with others that you deem appropriate, and I will do the same by sharing this letter with other interested parties in both the United States and the United Kingdom.

On January 6, 2010, you reported in PloS One that you failed to detect xenotropic murine leukemia virus-related virus (“XMRV”) in ME/CFS patient samples. In that publication you reported the following conclusion, “[b]ased on our molecular data, we do not share the conviction that XMRV may be a contributory factor in the pathogenesis of ME/CFS, at least in the U.K.” You subsequently made the following statement in your commentary regarding the Netherlands study in the BMJ, “….van Kuppeveld and colleagues provide the additional information reported at a conference last year that the patients in question came from an outbreak of chronic fatigue syndrome at Incline Village on the northern border of Lake Tahoe in the mid-1980s.”

This statement about the origin of the 101 patient samples is untrue. The patients in the Science study were well defined in the paper as having CFS by the Fukuda and Canadian consensus definitions of ME/CFS. More importantly the patient samples did not come from the “Lake Tahoe outbreak” as you assert, but rather from patients who had become ill while living in various parts of the United States.

We would also like to report that WPI researchers have previously detected XMRV in patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s cohorts prior to the completion of their own studies, as they requested. We have email communication that confirms both doctors were aware of these findings before publishing their negative papers. In addition, Dr. van Kuppeveld asked for and received reagents and a positive patient sample to determine if his testing procedures could in fact detect XMRV in a positive blood sample before he published his paper. We wonder why these materials were not used in his study which also failed to detect XMRV.

One might begin to suspect that the discrepancy between our findings of XMRV in ourpatient population and patients outside of the United States, from several separate laboratories, are in part due to technical aspects of the testing procedures.

To help identify the possible reasons for the discrepancies in detection of XMRV, WPI would like to send you known positive patient samples with controls, from the United States in an appropriate number, along with WPI reagents, so that we can help you determine whether your testing methodologies will accurately detect XMRV in a clinical sample of blood. In addition, WPI would be willing to test a like number of samples from your patient cohort to see if our researchers can detect XMRV in those samples. 

This critical exercise would help resolve the question of whether you are using all of the appropriate techniques necessary to detect XMRV in a patient’s sample. If your tests are able to detect XMRV correctly in the known positives, then the debate can appropriately center on whether we can identify the differences in the patient cohorts which have been the subject of various studies. It is in this systematic manner that we all may help to move the science forward; instead of continuing to debate whether or not ME/CFS patients in Europe are infected with XMRV.

It is also important to note that our initial study was not intended to prove causality of ME/CFS, but to report a significant association between patients who had been diagnosed with ME/CFS and XMRV. We believe that there exists compelling evidence to spur additional scientific review, especially in light of the fact that our team of researchers also discovered XMRV in the blood of 3.7% of our non contact controls.

I look forward to your timely reply.


Annette Whittemore
Founder and CEO
Whittemore Peterson Institute

Dear Dr. McClure,

I second the motion that you respond to Annette in a timely manner. And please reconcile the technical and conclusive issues you previously had, by working directly with WPI.


I just finished listening to The Health Report's interview with Dr. McClure. She states her reason for rushing to publish was due to the fact that 1) A 'lab in the US' was charging a very high fee for their XMRV test, and 2) that there were reports of some (Doctors? Clinics?) offering anti-viral treatments to CFS patients.  So, if I get this right, she wanted to make sure we didn't 'buy into' the WPI's study, because she was concerned for our wallets?, and that unsubstantiated anti-viral treatments being offered (and again, I ask WHO?) might harm us? Well, that's just...  so noble. Can I just lol here?

Yes, there was a questionable lab that entered the scene about 1 week after the Science report (Co-Diagnostics, and they are no longer on the internet). But I would really like to know where she gathered the information concerning Anyone who was 'offering' anti-viral treatments for CFS patients? And why did Dr. McClure suddenly become So attentive to the plight of PWC's? Why was she all of a sudden so thoughtful, so concerned as to risk her reputation by publishing something so... wrong? I DON"T GET IT!! Some one Please explain it to me!!

As a PWC since 1993, I can tell you that PWC's are not easily persuaded by snake oil salesmen. We are not your typical patients who want to be spoon fed.  We have had to defend ourselves for so many years, and have been received with such disdain and complete dismissal just for being proactive in understanding how we can help ourselves, that we are always wary.  We also weigh the costs and risks very carefully before deciding on any lab test, and/or embarking on Any treatments. And we rely on scientific accuracy when we do weigh the risks.  What we NEED from You, Dr. McClure, is accurate science, WITHOUT EXCEPTION OR BIAS, so we can make the very Best decisions towards increasing our quality of life, and/or increasing our life span.  We do not need you using your 'concerns' as a basis for publishing unsound science.  And if Dr. McClure was implying that the XMRV lab test offered by VipDX was out of line monetarily?, she might think about researching where the XMRV lab test proceeds from VipDX go. They go back into WPI for research. 

Now, given what I know to be true about WPI and VipDX, they are the ONLY lab I would trust with my XMRV testing. Certainly not a retrovirus lab where instead of doing the level of research required for meaningful accurate results, they instead justify rushing the wrong data to publication that has the power to affect Millions of people, because they are 'concerned' about patients with CFS being taken advantage of. Yeah, That makes sense. Please do not concern yourself with us again Dr. McClure. That kind of concern we can do without.

And a special thanks to Annette Whittemore (and her family) for her generosity, her dedication and her never ending focus on the details that Do matter.

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Saturday, April 10, 2010

Transcript quotes from Dr. Coffin about 2010 CROI

CROI = Conference on retroviruses and opportunistic infections

Dr John Coffin - Recent XMRV remarks at CRIO 2010:

Coffin: "That new virus is called XMRV. It was first described in some cases of, associated with some cases of prostate cancer about three or four years ago but it really burst onto the scene last fall when a study reporting that it was associated with many cases of in a cohort of patients with chronic fatigue syndrome.  The study reported detecting the virus in about two-thirds of the patients in this particular cohort.  Potentially a very exciting result because for any number of reasons; one is because chronic fatigue syndrome has been a very mysterious disease, the other is that the association of prostate cancer was a little unsatisfying in some ways -- that I can get into if you want. But this is very clear evidence that this virus was in fact infecting people and also that in both the prostate cancer study and this one there was a significant fraction of normal controls, uninfected people showed, also showed signs of infection with this virus.  The number being on the order of 4% in the two studies, which if you take that over the whole population of the United States or the whole population of the world that actually turns out to be a very large number of infected individuals. More, much more, for example in the United States than the total number of HIV infected individuals, and so the possibility of this virus might be associated with this or perhaps other kinds of diseases is a very real one and one that really needs to be investigated and nailed down."


Complete transcript and video can be found at:


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Friday, April 9, 2010

A Welcome Ban on ME/CFS Blood Donations: by Parvofighter

If you want one place to go, to illuminate news surrounding XMRV and CFS/ME, then Parvofighter has it:
And here is the video he references, although I am disappointed Dr. Judy and team and WPI was not mentioned in the video. I guess we should be used to that by now.

Please join the cause!

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Wednesday, April 7, 2010

Canadian Blood Service now Bans CFS Patients from Donating Blood

Virus leads Canadian blood service to ban certain donors

Canadians = smart. They learned their lesson the hard way:

Tainted Blood Scandal

You know how the U.K. addresses the potential blood XMRV issue? Their new policy states that if an ME patient walks in to donate blood, the nurse will ask "How are you feeling today?" and if the donor says ok! (which probability = zero), then they can donate blood. Yeah, I know right?

There is a new potential serology test for XMRV in the US:

Novel XMRV retrovirus diagnostic test developed
Based upon what happened with HIV, I predict that the serology test will be performed by the corporate private blood providers Before the public is notified of the blood safety concerns. 1) This will calm the general public to know blood products are now 'safe', but seriously, it will give the blood providers time to empty their infected inventories to third world countries. Just what Bayer did. Here's the NY Times article:

2 Paths of Bayer Drug in 80's: Riskier Type Went Overseas

And more from here:

Bayer Documents: AIDS Tainted Blood Killed Thousands of Hemophiliacs  

Isn't it wonderful when blood safety turns into big business?  

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Tuesday, April 6, 2010

New Phase III Ampligen Trial at Hunter-Hopkins Center

Dr. Lapp at Hunter Hopkins, NC and Hemispherx Biopharma are conducting a new government trial of Ampligen.  Government ID = NCT00215813.

They are currently seeking participants. In order to be a participant, PWC's first need to have an appointment with Dr. Lapp at the center in Charlotte, NC. The cost of seeing him for about 2 hours is appx. $700.00.  Participants would need to be able to afford the airfare, his fees, and housing during the trial. Not an inexpensive venture. Further information:

"An Open-Label Study of Poly I: Poly C12U (Ampligen®) in Patients with Severely Debilitating Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME). The FDA approved the study for cost recovery. Patients enrolled in the study are responsible for costs related to the therapy, e.g., drug cost, infusion cost, cost of supplies, diagnostic and other laboratory testing."

Also, from Dr. lapp's website: Details of costs.

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Monday, April 5, 2010

Potential Risk to Blood Supply Probed

UPDATE: A followup article in the WSJ on Thursday, April 8th.

From The Wall Street Journal today (Monday 5, 2010):

We are leaving thoughtful comments. A pretty well rounded article, but they (Mass media) continue to use the word "Replication" instead of "Validation". The difference is night and day in the biomedical world. The Whittemore Peterson Institute explains why here:

Reading it again, I do think they spelled out the fact why the replications may not have worked. kudos wsj. I wish my brain would pick up these things the first time around. 

"Labs in Europe reported earlier this year that they haven't been able to replicate the XMRV findings in patients with chronic fatigue syndrome or prostate cancer. And public-health experts say a key issue in sorting out the disparate findings is to reach agreement on tests that are sensitive and reliable in identifying XMRV in the blood."

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