Dr. Jacob Teitelbaum’s Comments On Latest XMRV News

It was announced earlier this week that the NIH & the FDA have confirmed XMRV in ME/CFS and the media is buzzing with the news along with many CFS blogs.  I received an email today from the famous CFS & Fibromyalgia physician, Dr. Jacob Teitelbaum, with his latest blog post on the exciting information.  I wanted to share some of his thoughts with you.  As we all knew, including Dr. Teitelbaum, politics has always surrounded the lack of support that CFS has received over the years and was the main reason the just-released report from the NIH & FDA was held up for a while. 

To me, the fact that these reports were NOT released with proof of this XMRV information in ME/CFS reeks to high heaven.  Dr. Teitelbaum says in his blog post, XMRV Confirmed in CFS:

A well-done study out of the FDA and NIH has finally been published. Though the politics and controversy around the topic initially caused the study’s publication to be held up, and subjected to even more detailed scientific review and scrutiny, it was worth the wait.

The study showed that evidence of XMRV virus (and related viruses called “MLV”) was present in 86.5% of CFS patients vs. less than 7% of healthy controls. This is a dramatic difference and corroborates the WPI study. I was also very pleased to see that Dr. Anthony Komaroff was one of the study authors.

Why do I consider the presence of XMRV to be confirmed if there are conflicting studies?
1.The testing and science used in the study was excellent. When looking for a needle in a haystack, you need the right tools or you won’t find it. Not finding it doesn’t mean it’s not there.

2.The researchers were unrelated to the WPI researchers and had no financial ties. I consider the WPI folks to be excellent and motivated by the right reasons, but independent verification and confirmation still adds a lot.

3.That the healthy patients were mostly negative while CFS patients were largely positive confirms that the testing was not “too sensitive.” A second form of confirmatory testing was also done to confirm positive results.

This positive study distinguished people with CFS from healthy controls, was well done, and was conducted independently of any financial interests. That it reproduced the findings seen earlier in another well-done study is very convincing. Given this, other studies that found no XMRV in anyone suggests the researchers might need new eyeglasses.

Dr. Teitelbaum says that the finding of XMRV does not mean that XMRV causes ME/CFS.  He states, “ Because so many infections have been documented in CFS, it could simply be a reflection of an immune dysfunction, and not the cause.”

Dr. T. also says there are no proven treatments yet for XMRV, but that there are “many promising candidates”.  He says that they are risky and expensive and not that helpful at this point so he does not recommend that we be guinea pigs. 

CFS patients are wondering if they should be tested for XMRV.  Dr. Teitelbaum says that it depends. 

If the cost (about $650 last I checked) is not prohibitive, and you have family or doctors treating you like you’re nuts, it may be worth it. Also, if you are in litigation with an insurance company it may help (the insurance company will likely ignore it, but the judge may be more open to it.  Do the entire panel to avoid a false negative test. 

This news is just another confirmation that CFS is a REAL, PHYSICAL DISEASE.  We are not crazy, mental, hypochondriacs, or lazy.  We are truly sick.  Now even the government can’t deny it even though they tried to hide it! (That’s my opinion, anyhow.)

Dr. Teitelbaum’s thoughts on how this news helps us now:

This is one more potent confirmation that the illness is a real and physical disease. This has been obvious for a long time, but insurance companies and doctors could still be idiots and ignore the science. The media attention to this new study, and it being an NIH/FDA/Harvard study, will make it harder for nitwits to still make believe this is all in your mind. For perspective, doctors used to call Multiple Sclerosis “hysterical paralysis” and told women with lupus and rheumatoid arthritis that they were just hysterical — until new testing confirming the illnesses became available and changed everything.

Breaking News: NIH/FDA Study Reports XMRV Found In CFS Patients

Today at 3:00 p.m., the NIH finally released the information to the press that we have been waiting for – the publication of the article by the NIH, the FDA and Harvard Medical School researcher Harvey Alter.  The much-anticipated article reports evidence of murine leukemia virus-related viruses (MLV) in the blood of 32 of 37 CFS patients tested. XMRV is one of several variants of the MLV family of retroviruses, and the findings clearly support the WPI team’s Oct 2009 paper in Science, the researchers stated.

To read the full article by Harvey Alter, please click the link below.  This is a big day for ME/CFS research, hopefully. 

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors

Updates On XMRV Controversy

I have been trying to keep up with all of the controversy surrounding the CFS XMRV research that has been going on since last October and it it weren’t for the CFIDS Association, I wouldn’t be able to make sense of any of it. If you haven’t already noticed, I am a huge supporter of this organization and I donate money monthly to them to try and help do my part for all of us suffering.  While I was catching up on some reading on their site tonight, I wanted to make sure I passed along the XMRV updates the CFIDS Association keeps on their website.  They have been following all of these studies very closely and feel like most of us patients that the subsequent studies that have been done are not sufficient to the first one. 

So here are some of the updates thanks to the CFIDS Association and from the president, Kim McCleary. 

• From the CEO’s Desk
• CFIDS Association XMRV Resources Page (Updated 8/17/10)

Delay In Releasing XMRV Study Causing Major Upset

XMRV has most certainly brought ME/CFS to the forefront as far as the media is concerned.  Even though we are not getting very far with XMRV being found in studies and progress in that area, all of the media attention is putting CFS in the spotlight.  Now because of the recent XMRV link to ME/CFS being disputed by the CDC, and the delay in releasing the study information, the CFS community is in an uproar and rightly so.   According to the New York Times article published today:

Researchers at the National Institutes of Health and the Food and Drug Administration, citing a need to re-evaluate their data, have delayed publication of a new study believed to provide evidence of a link between chronic fatigue syndrome and a little-known retrovirus.

The study, already peer-reviewed, was supposed to appear in the prestigious Proceedings of the National Academy of Sciences. The delay has sparked an outcry on blogs and social networking sites among chronic fatigue patients, who are desperate for answers about their debilitating illness and fear that important scientific data are being suppressed.

The CFS community has been waiting for over 20 years to be taken seriously by the CDC and here we are again – on the edge of finding a possible cause to our illness, and the CDC has conveniently found no link to XMRV.  Yes, there have been other studies done as well that haven’t found links either but no one is replicating the original study that found the virus in the majority of the CFS patients tested.  What is the problem?  It doesn’t take a rocket scientist to figure out what is going on here.  The CDC has never taken our illness seriously and why would they start now?

The New York Times did a great job with their article today, Delay in Release of Study on Chronic Fatigue Syndrome Prompts an Outcry, so read through it all, go to the links in the article and check out some of the other blogs and sites it refers to.  Let me know what you think!

CFIDS Association XMRV Update Webinar

The CFIDS Association is holding another webinar this Thursday, July 15th, from 12 p.m. – 1:30 p.m. EST, to offer the latest research information and updates on XMRV in relation to ME/CFS.  If you would like to take part in this webinar and keep abreast of all of the latest XMRV happenings, please visit the XMRV Update Registration page, fill out the form and submit your information ASAP.  Space is limited to 1,000 participants so you will want to get your registration in quickly.  Here are some of the details on the webinar:

During this program you’ll hear from two experts about the latest research into the association between XMRV, a newly discovered human retrovirus, and CFS.

Vincent Racaniello, PhD, a virology professor at Columbia University and host of the popular “This Week in Virology” podcast and Virology Blog, will update us on what is known about XMRV, its association with human disease (including CFS) and how research should move forward to understand its role in CFS.

Lucinda Bateman, MD, an expert CFS physician, will provide an update on the latest studies of XMRV and CFS. Dr. Bateman is a clinical collaborator on a study at University of Utah led by Dr. Ila Signh, one of the co-discoverers of XMRV. She will outline seven ways in which the research on XMRV has positively impacted the field of CFS research and what we’re likely to learn as studies progress.

Scientific director Suzanne Vernon, PhD, will host the webinar. Suzanne earned her PhD in virology, so this promises to be a thought-provoking and informative program from all speakers.

XMRV Link to ME/CFS Disputed by CDC

This morning I was reading some posts on Facebook and saw that some new information regarding XMRV & ME/CFS has been published by the Wall Street Journal but unfortunately – again – it isn’t good news for us CFS patients.  Ever since news broke last year regarding the XMRV, the xenotropic murine leukemia virus-related virus, being found in ME/CFS patients, there have been different studies that have said that the virus is not in CFS patients.  Now the CDC is saying the same thing, according to the Wall Street Journal:

Scientists at the Food and Drug Administration and the National Institutes of Health, including NIH infectious-disease specialist Harvey Alter, recently finished research that came to a conclusion similar to that of the Science paper—that XMRV, or xenotropic murine leukemia virus-related virus, is found in the blood of chronic-fatigue syndrome patients.

The paper was accepted for publication in the journal Proceedings of the National Academy of Sciences of the United States of America but is on hold, according to Ashley Truxon, media coordinator for the journal. She had no further comment.

Separately, scientists at the CDC, led by microbiologist William Switzer, concluded in a paper in another journal, Retrovirology, that they couldn’t find XMRV in the blood of people with chronic-fatigue syndrome, according to people familiar with the situation.

What is unusual is how this whole situation is the “hold” from what I am gathering from the reading and from what others are discussing.  The article goes on to say that:

Publication of results is considered a critical part of the scientific process, and researchers familiar with the situation said they were puzzled by the move. It is unusual for a paper to be held after it has already gone through the formal peer-review process and been accepted for publication, say scientists who publish frequently.

“It’s fair to say it’s not a usual kind of thing,” said John M. Coffin, a special adviser to the National Cancer Institute and a professor at Tufts University in Boston who wrote an editorial alongside the Science report in October.

We all know, however, what it has been like over the last 20 years with the CDC and CFS.   They have never taken us seriously and I’m sure this is just another reason for them not to.  Does anyone think they are going to try hard to find a XMRV and if they do, will we ever really know it?  What are your thoughts?

World Conference: XMRV Replication Study Eventually

We have been hearing a lot of information, both confirming and denying, the presence of XMRV in ME/CFS patients.  According to this article on ProHealth, the consensus at the World Retrovirus Meeting in Prague, a replication Study Finding XMRV in CFS is “just a matter of time”.

On May 3rd, a Dutch press release posted in English by the European Society for ME  says the following:

Last October U.S. scientists presented a breakthrough around the research on chronic fatigue syndrome (CFS), which was published in Science. They found traces of the retrovirus XMRV in the blood of CFS patients. Thereafter, three groups of European researchers, including a Dutch group from Nijmegen, couldn’t confirm these findings. However, at the ‘Centennial Retrovirus Meeting’ in Prague it became clear that the first positive ‘replication study’ seems only a matter of time. [Abstracts of papers presented at the Prague conference are available at the CRM site.]

The June issue of the Dutch magazine Ortho will focus on the multi-day conference in Prague, which ends today. Especially in the corridors this new retrovirus was the talk of the day. Insiders agree that the negative XMRV studies which have been published so far, were not exact replication studies. The several groups of researchers used techniques that differed too much from those used by the U.S. researchers. This is also true for a yet unpublished German study, where XMRV wasn’t found in blood samples from CFS patients either.

Recently the American scientist Dr. Judy Mikovits visited several European research groups to help them with the proper laboratory technique. It is now clear that these visits are starting to pay off.

During the Prague Conference, Mikovits explained once more in great detail the complex methodology of the Whittemore-Peterson Institute (WPI), the National Cancer Institute (NCI) and the Cleveland Clinic. This methodology of culturing the virus is imperative because XMRV is only present in extremely low concentrations in the peripheral blood.

Dr. Francis Ruscetti of the renowned NCI – a U.S. government agency – told Ortho that he hopes this controversy will all die away in 2011.

He is especially surprised about the fact that the investigators of the UMC St. Radboud at Nijmegen concealed in their publication that the Americans found traces of XMRV in the same blood samples from the Dutch patients. “I don’t know how they get away ethically with this,” said Ruscetti. “I don’t think that is good science.”

Ruscetti pointed out again that the WPI, the NCI and the Cleveland Clinic applied four procedures in their research. “In those negative studies they only tried one.” Ruscetti also ventilated his annoyance over what he calls the “whispering campaign” about contamination. According to the Nijmegen researchers, the Americans contaminated or polluted the Dutch blood samples.

Among others Ruscetti is supported by Prof. Dr. John Coffin, who is linked both to the NCI and Tufts University in Boston. He is considered one of the most prominent retrovirologists in the world.

“People have raised the issue of contamination,” said Coffin. “But we don’t really know anything about that yet. We don’t have any evidence. A lot of the studies were done in fact at the NCI, in the lab of Francis and Sandra Ruscetti. They have a long experience with these viruses and are very careful workers.”

Coffin emphasized once again that doing a replication study implies that it is performed in exactly the same way. “In none of the studies that have been published so far that were negative, the virus was cultured,” said Coffin. “Only the Science study did this, which is a very compelling point.”

Researchers from Nijmegen were not present at this leading conference.

To read more articles on XMRV I have previously posted, please refer to the related post links below or do a search using XMRV.

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