New York Times Updates XMRV Saga

I'm sure most of you have heard of all the crazy, scandalous goings-on related to XMRV research these past six months.  Frankly, I've avoided writing about it here.  I just don't have the energy to address politics, scandals, and controversy, unless there is some valuable information in there for patients.

But now the New York Times has published a summary of the whole XMRV saga, from that first paper published in Science through to the recent arrest and the new charges against the Whittemores.  So, you can read all about it there, in case you haven't been keeping up.  It's a brief and easy-to-understand summary of the main events.

The Lipken study is still in progress to ascertain whether XMRV is a factor in ME/CFS, so we will see what results that brings.

Latest on XMRV and WPI

Ugh...I've been procrastinating on writing this blog post.  By now, most of you have probably already heard most of this news.  Honestly, we've just been in crisis mode here for the past month (or more), and I have been too wrapped up in taking care of Jamie and researching what might help him to have any mental energy left for summarizing the complex goings-on in the ME/CFS research world.  But I feel guilty for not keeping you up to date, so I will attempt to write a brief review of the latest news.

The latest XMRV study was published a few weeks ago.  Bottom line is that they were unable to reliably detect XMRV in ME/CFS patients.  Here's a good summary from the New York Times.  The reason this study was extra-important was that it was a multi-lab study; 15 previously-found-positive samples and 15 previously-negative samples were sent, blinded, to nine different labs, including Dr. Mikovitz's own lab at WPI and VIP Dx, the lab that has been selling and running commercial XMRV testing.  None of the labs was able to reliably find XMRV in the samples.  Only two labs in the entire study found any positive XMRV results at all, and none of the results was reproducible.  In some instances, even the same lab came up with different answers each time it ran the same sample.

Most alarming, VIP Dx could not get reproducible results.  This means that the same sample might sometimes come up positive and sometimes show negative.  That lab has now been shut down; there is no longer a commercial XMRV test available.

In the aftermath of this study, WPI (The Whittemore Peterson Institute) let Dr. Mikovitz go, as explained in this Wall Street Journal article.  In public statements, Dr. Mikovitz has said she is still committed to XMRV research and still has some grant money.  She is currently looking for another institution to sponsor her work.  WPI says, as stated in the above article, that they remain committed to ME/CFS research and specifically, research into retroviruses' role in ME/CFS. 

So, what does this all mean?  Is there really an XMRV?  Is it involved at all with ME/CFS?

From what I've read, it seems less and less likely that XMRV is the culprit in ME/CFS; however, I don't think anyone can conclusively say that for sure (though some have!).  XMRV could be just the result of lab contamination, as some claim, or it could just be something that is constantly changing and is therefore very hard to reliably detect.  The big NIH XMRV studies involving hundreds of patient samples are still in progress.

If you had your own blood tested for XMRV, you can't believe the results, whether they were positive or negative.  Even Dr. Mikovitz agrees with that; apparently, she recommended VIP Dx be shut down earlier.  So, what about the people who tested positive and have improved on anti-retroviral drugs?  Well, there are three possible scenarios: XMRV is indeed present but can not be reliably detected yet or there is another retrovirus present that has not yet been identified or the drugs had some other positive effect for reasons not yet understood.  A lot of "not yets" in there, huh?

So, yes, this is a bit of a setback for us, but I don't believe we are back where we started, as some have suggested.  For one thing, XMRV has brought unbelievable, tremendous attention to ME/CFS.  Before XMRV, can you even imagine the NYT, WSJ, Science, Washington Post, BBC, and other major news media all covering a story related to ME/CFS?  Now they routinely cover new studies and new information.  We are finally getting some of the attention that this debilitating illness deserves. 

With that attention comes interest (and funds!) for research.  XMRV opened the door for all sorts of new research possibilities into the causes of ME/CFS, with a focus on infectious agents.  Negative studies are absolutely necessary for science to move forward, in any field, and provide information that is often just as valuable as positive studies.  Scientists in many fields and at many different institutions now seem eager to build on what's been done and delve into the puzzle that is ME/CFS.  And that is a far cry from where we were just 5 years ago.

Science Requests Retraction of Original XMRV Paper

XMRV and CFS are once again being splashed across all the major news media this week, though this time it's a big step backward.

The editors of the magazine Science, which published the seminal XMRV paper in October 2009, have issued a request to the paper's authors that they retract the paper, in light of the negative XMRV studies that have been published lately.  This news, with a strong negative spin, has been reported in all the major news media, from NPR to the Wall Street Journal to Scientific American, plus in many local papers and news shows and as far away as Australia.  Here's a short summary from the New York Times.

Of course, Dr. Mikovitz of the Whittemore-Peterson Institute issued a response.  You can read it at the WPI website (click on the two documents posted on May 31, 2011).  She once again defends their original research, points out flaws in the contamination theories, and states that this action is premature.

I try to stay away from all the various conspiracy theories that tend to circulate around ME/CFS, but this request from Science is so ludicrous, so premature that it's hard not to think that someone really is out to get us.  Most  knowledgeable scientists (other than one or two on the fringe) agree that this subject is far from closed and that more research is needed.  In fact, a couple of huge, government-sponsored, multi-center studies are in progress right now.  Why on earth would anyone try to cut off debate right in the middle of all this?  It goes against all principles of scientific study.

Let's just hope that logic and science prevail, so we can get more data and more information before jumping to any conclusions.  Unfortunately, though, no matter what happens going forward, the damage has already been done with all of this negative media coverage, and we are once again in the position of defending ourselves and our right to full scientific investigation.

The Latest XMRV Study

By now, many of you have probably heard about the latest study on XMRV in ME/CFS, conducted by Dr. Singh and published in Journal of Virology a few weeks ago.  I apologize for the late posting on this, but I wanted to gather information and opinions from several sources, especially a response from the Whittemore-Peterson Institute, before attempting to explain it.

So, here's the scoop, in brief:

• Singh and her colleagues reported in the May 4, 2011, issue of Journal of Virology that they were unable to find any evidence of XMRV in any of the ME/CFS patients they tested.  What sets this study apart from many of the other negative studies is that Dr. Singh expected to find XMRV, consulted with Dr. Mikovitz, author of the original XMRV study at WPI, and used multiple methods to try to detect XMRV.  They analyzed blood samples from 100 ME/CFS patients and 200 healthy controls.  Even Dr. Mikovitz said she was "astounded" that Dr. Singh didn't find XMRV.  Dr. Singh also says she had problems with contamination.  Here is an article from Science that summarizes the study pretty clearly.
• Though this sounds pretty grim, Dr. Mikovitz issued a response from WPI (to read it, scroll down to May 9 on this News page).  She clarifies some misconceptions about the Singh study and continues to defend her original positive XMRV study, published in Science last October.  She also further explains how WPI has made sure that there are no contamination issues in their lab.
• Suzanne Vernon, Scientific Director of the CFIDS Association issued a detailed analysis of the Singh paper that explains the methods and approach used, as well as the results.  In her conclusion, she explains that the two huge multi-center studies of XMRV in blood sponsored by the Department of Health & Human Services (DHHS) are still going forward and that no matter how things turn out, WPI has done some amazing work and XMRV has brought much-needed attention to ME/CFS from the scientific community and the general public.
• The International ME Association also issued its own analysis of the new study.  This is a highly technical document that delves into the details of the methods used in the Singh study.  Its conclusions suggest that the testing methods in this study were not adequate to detect XMRV.
• While all this arguing is going on, WPI has published a new study that found a unique immune response in ME/CFS patients with XMRV, which would seem to provide new evidence for XMRV's role in ME/CFS.

So, once again, we have an XMRV study with multiple differing views of its outcome.  I'm not a virologist and don't understand the details of all the technical arguments over methodology, but it seems clear to me that these issues are not yet settled.  Certainly, I hope that WPI is right about XMRV - that would mean some answers for us, finally - but they still need to convince the scientific community.  Perhaps this new study on immune response will help.

Bottom Line:  Unfortunately, it seems to be more of the same - wait and see.  WPI continues its work into the role of XMRV in ME/CFS, the DHHS is moving forward (albeit slowly, at the pace of government) on its huge, multi-center studies of XMRV in ME/CFS, and we just have to be patient and wait for the scientific community to work it all out.

WSJ Blog Covers XMRV Debate at NIH Workshop

In my summary of the 2-day NIH ME/CFS State of the Knowledge Workshop (see post below), I gave a very brief summary of the XMRV debate between WPI and the National Cancer Institute.  The Wall Street Journal Health Blog did a much better job providing the details of the debate that took place yesterday and today.  Check it out if you're interested in more information.

Article on ME/CFS and XMRV in Nature

Nature magazine ran a 4-page feature-length article on XMRV and the search for a cause for ME/CFS, including an in-depth interview with Dr. Judy Mikovitz.  It's a pretty good article - a clear and well-written explanation of the controversies surrounding XMRV, mostly accurate and even-handed, indicating that CFS is now beginning to garner serious attention in the scientific community. 

Just one glaring problem - the article starts by referring to Chronic Fatigue Syndrome (CFS) but then quickly lapses into lazily calling it chronic fatigue (no caps even).  Lots of readers have already complained, and the editor responded with an apology and an assurance that he didn't intend to downplay the seriousness of CFS but just thought it would read better that way without a lot of acronyms (you can read all the letters at the end of the article). 

Sloppy editing, but otherwise an excellent article and some very good coverage for us.  Besides, the sad truth is that most people will not even notice the disparity between calling it CFS and calling it chronic fatigue.  At least people are finally talking about it.  If you're confused yourself over XMRV, this article provides a pretty good overview.

XMRV in ME/CFS: New Facts and Findings

I'm still a bit down this morning, though maybe better than yesterday.  Unfortunately, I just had to shovel a little again.  My 12-year old son did most of it (the kids had another 2-hour delay this morning), but I wanted to clear a spot to park the cars.  Thank goodness my husband gets back today!!

A couple of days ago, I posted links to a summary of a recent XMRV presentation.  The summary was written by Lannie in the Lymelight, and I think she did an excellent job summarizing a lot of information.  I encourage you to click on the link and read her entire two-part summary.  But, in the middle of the night, as I was struggling to get back to sleep (rough night!), it occurred to me that some of you may not be up to reading and understanding the whole thing, yet I think there is some critical information in there.  So, I thought I'd post a few highlights here for you.  If you're really badly brain-fogged, try just reading the parts in bold!

The following statements are excerpted directly from Lannie's summary on her blog (my own explanations or clarifications are in parentheses):

• As most of you know, the detection of XMRV in blood cells of patients with CFS was first published in Science, October of 2009. At the time XMRV RNA/DNA was detected in 67% of patients with CFS, XMRV protein was detected in greater than 85% stimulated/dividing T and B cells, and an antibody to XMRV Envelope was detected in over 50% of CFS patients. Exactly one year later Mikovits was published again, after improving on original testing techniques to find XMRV infection in 98% of the original cohort.
• (There has been a lot of media attention paid to recent negative XMRV studies.)  Both Whittemore and Mikovits addressed the skeptics – confidently, calmly and articulately. Whittemore put it best when sharing what Mikovits has many times reminded her, “positive papers take forever – months or even years to publish. Negative papers only take a few weeks (to publish).”  (The two presenters described in detail why the negative studies do NOT contradict the positive ones and why contamination is the cause of the positive results).
•  Even with skeptics galore, hope is not lost. Enter a second study, confirming what Lumbardi, Ruscetti, Mikovits, et all proposed in Science, October 2009. This paper, known as the Lo/Alter for Dr. Shyh Ching Lo and Dr. Harvey J. Alter, found MRV, closely related to Polytropic MLV, in 86.5% of CFS patients and 6.8% of healthy controls.
• Again, understanding the nay-sayers to the Science publication, the Lo/Alter team rigorously ruled out contamination. They are the only other study, like that published in Science 2009, that controlled its own samples. If samples are not pristinely maintained (i.e. some might be frozen and thawed REPEATEDLY (updated 1/20/11), "the results will be negative," confirmed Mikovits.
• Another study, unpublished, but shared with the WPI is from the Cheney Clinic in North Carolina. He tested a group of 47 patients, all families, with 81% positive for XMRV. The findings in this group are astounding. The ratio of male to female was identical. This is NOT a woman’s disease! Half of all family members with a CFS case are XMRV+. And then the list goes on and on of parent/child correlations with CFS, XMRV and Autism. (I previously reported on on this family study which I still find astounding).
• (Another family study has been conducted by WPI with similar results).  A quick summary provided by Dr. Mikovits regarding families. She can confirm, there is XMRV in children under the age of 5. To date they have confirmed XMRV in 16 of 17 families with neuroimmune disease amongst multiple members.
• What we know about XMRV is that it integrates into human tissue, demonstrating that it is a human infection. We can confirm it is NOT an endogenous virus to humans. It is in fact a new human retrovirus. However, how it got into humans is still unclear at this time. 
• In discussing tests, another very important take away was that if you test positive you are positive. If you test negative, they are not able to confirm it is absolutely negative. Until there is further understanding of the XMRV lifecycle, they can not confirm this.  
• So where are we seeing XMRV? The disease association seems limitless. It’s showing up in every corner of the neuroimmune world.  One private practice shared it’s associations with Mikovits and the WPI team. This practice started testing its neuroimmune patients and soon found they were treating XMRV positive patients with CFS, Fibromyalgia, Chronic Lyme Disease, Multiple Sclerosis, Parkinson’s Disease, ALS, the list goes on.  XMRV research has concentrated around ME/CFS to date, but larger studies on the presence of XMRV in these other neuroimmune diseases are coming.
• In the presentation they referenced a study where 65 Chronic Lyme Disease patients were tested for XMRV, and 100% came back positive. This was the most reactive group the WPI has seen. That is a higher rate than ME/CFS! 
• Treatment: Three antiretrovirals showed promise amongst 45 compounds and 28 drugs approved for use in humans. Those three include Zidovudine(most know it as AZT), Tenofovir and Raltegravir. The study showed all two-drug-combinations showed efficacy against XMRV in vitro. (NOTE:  The only studies to date have been in vitro studies (i.e. in the lab) - there have been no patient clinical treatment studies for XMRV yet.)
• TREATMENT: Dr. Brewer, an infectious disease specialist who’s spent much of his career in HIV but more recently in ME/CFS and XMRV, has used 2 and 3 drug combination antiretroviral treatments with a CFS/XMRV+ patient sample of 25. The results have been a mixed bag among the patients on ARVs anywhere from 1-9 months. The expected Herxheimer response occurred in some as would be expected. Symptom reduction has been reported, however majority reported feeling “about the same.”   She (Dr. Mikovitz)  has noticed a common theme of patients feeling better around 6 months, followed by a return of all or most symptoms. It sounds very similar to what happens to many on antivirals. She went on to ask herself and her team “how can we add immune modulating supplements to keep up the response beyond 6 months?” That might be the next step we see in antiretroviral (ARV) discussion.

Well, that still turned out longer than I intended, but I believe those are the highlights, for those of you with cognitive difficulties understanding the entire summary.  The bottom line is definitely optimistic for all of us with ME/CFS, as well as other neuroimmune diseases.

This post is a part of XMRV Bloggerama Day, intended to flood the internet with FACTUAL information about XMRV, to counter all of the junk that's been circulating recently.  Join in with your own post!  The information page even includes a template and links you can cut and paste, if you're not up to writing something yourself.

Dr. Mikovitz's Recent XMRV Presentation

Fellow CFS and Lyme blogger Lannie in the Lymelight recently posted an excellent summary of Dr. Mikovitz's latest XMRV presentation in California last weekend.  And here is Part 2 of her summary.  She did a great job summarizing the presentation, which includes more updates in XMRV research - check it out!

WPI Refutes Latest Accusations of Contamination in XMRV Studies

I haven't had the time or energy to post about this, but I imagine you've seen at least one of the many articles published this week and last claiming that there is no XMRV in ME/CFS and that the previous positive studies that found XMRV were due to contaminated samples.  This new proclamation is coming from the UK but has been reprinted by many major news outlets.

I haven't been paying much attention to it because I knew it was all BS.  As I reported this fall from the NJ CFS Conference, Dr. Mikovitz addressed the issue of potential contamination in her presentation, including detailed explanations of why both her findings and those of the FDA/NIH study could not possibly be due to contamination.

Since this new accusation is getting so much press, I just wanted to post the refutations.  First, here's an excellent explanation written by a fellow blogger at CFS Chronicles - I absolutely love her coining of the term "retrocrapologists"!!

And here is Dr. Mikovitz own refutation, released from WPI yesterday:

"Statement from the Whittemore Peterson Institute regarding
Retrovirology December 20,2010by Whittemore Peterson
Institute on Tuesday, 21 December 2010 at 04:13
----------------------------------------------------------

The Lombardi et al. and Lo et al. studies were done using
four different methods of detection. They were not simply
PCR experiments, as were the studies by McClure et al. and
others who have recently reported their difficulties with
contamination. Experienced researchers such as Mikovits,
Lombardi, Lo and their collaborators understand the
limitations of PCR technology, especially the possibility
of sample contamination. As a result, we and Lo et al.
conducted rigorous studies to prevent and rule out any
possibility that the results reported were from contamination.
In addition to the use of PCR methodology, the Lombardi team
used two other scientific techniques to determine whether,
in fact, we had found new retroviruses in human blood
samples. We identified a human antibody response to a gamma
retroviral infection and we demonstrated that live gamma
retrovirus isolated from human blood could infect human
cells in culture. These scientific findings cannot be
explained by contamination with mouse cells, mouse DNA or
XMRV-related virus-contaminated human tumor cells. No mouse
cell lines and none of the human cell lines reported today
by Hue et al. to contain XMRV were ever cultured in the
WPI lab where our PCR experiments were performed. Humans
cannot make antibodies to viruses related to murine leukemia
viruses unless they have been exposed to virus proteins.
Therefore, recent publications regarding PCR contamination
do not change the conclusions of the Lombardi et al. and Lo
et al. studies that concluded that patients with ME/CFS are
infected with human gammaretroviruses. We have never claimed
that CFS was caused by XMRV, only that CFS patients possess
antibodies to XMRV related proteins and harbor infectious
XMRV, which integrates into human chromosomes and thus is a
human infection of as yet unknown pathogenic potential.

"The coauthors stand by the conclusions of Lombardi et al.
Nothing that has been published to date refutes our data."

Judy A. Mikovits"



Sue again...I hope that helps put these ridiculous accusations to rest (though of course, the controversy will continue...)

The Votes Are In!

The FDA voted yesterday to ban CFS patients from giving blood until they have more information on infectious agents and CFS!  It's about time.

A kind reader (Thank you, Luke!) just clarified that today's action was a recommendation from an advisory committee to the FDA, recommending they ban blood from ME/CFS patients.  The FDA hasn't actually taken action yet...

Sorry for the mistake - I'm so busy with holiday preparations that I must not have read the article carefully enough.

Here's another article from Bloomberg BusinessWeek on the recommendation.

Latest News on XMRV and Blood

I've been really overwhelmed with holiday stuff lately and am way behind on my blog postings, so you may have heard this news already, but it's big news for all of us so I thought I'd pass it along:

Although many countries, including the UK and Australia, have banned people with ME/CFS from donating blood in the wake of the XMRV research findings, the U.S. government has been dragging its feet.  Last week, the American Red Cross decided to stop waiting for government action and announced it would no longer accept blood from donors diagnosed with ME/CFS.

And, today and tomorrow, the FDA Blood Products Advisory Committee is meeting (FINALLY!) to discuss XMRV and related viruses and the potential dangers they pose in the blood supply.  Let's hope they make the right decision.

Time to make a nice, soft dinner (Craig got his braces put on today).

ME/CFS in Newsweek!

Both XMRV and Laura Hillenbrand continue to fuel increased coverage of ME/CFS in the mainstream media - hurray!

Here's an article that appeared in Newsweek on ME/CFS and XMRV that focuses on how ignored the illness has been in past decades.  Good stuff!

ME/CFS In the News

Two interesting news items came to my attention this morning:

• A new documentary about ME/CFS, called Invisible, is being released tomorrow in Vermont; the director/producer has CFS.  This is the first I'd heard of this one - I'm interested to see it.  I also highly recommend another award-winning CFS documentary, I Remember Me (see link below).
• An update from the Wall Street Journal's Health Blog on the new, large-scale study to test CFS patients for XMRV.  What's new and exciting about this study is that it is a cooperative study between WPI and FDA/NIH (who have both previously found XMRV and related viruses) and the CDC (who has not).  They are agreeing on using the same selection criteria, the same handling and storage requirements, and the same testing methods.  Hurray! 

The Laura Hillenbrand story was AGAIN pre-empted from the Today Show yesterday for the second day in a row, in order to make room for extended coverage of the royal engagement.  No offense to my friends in the UK, but enough already!   No official word on when it will run, but I'm watching again today!

ME/CFS and XMRV in the News

Lots of news and updates published recently on ME/CFS and specifically on XMRV.  I found most of this information and references from the CFIDS Association of America's latest e-mail update, CFIDS Link - I highly recommend signing up for this e-newsletter.  You can sign up for the newsletter or read past issues here.

• Wall Street Journal's Health Blog reports on a new paper by XMRV expert Ila Singh that provides guidelines to researchers on how to properly plan studies in order to use the methods necessary to detect XMRV in blood samples.  Let's hope the researchers all listen!
• The Journal of the American Medical Association's recent newsletter includes a detailed article on XMRV and CFS.  Nothing really new reported here, but it is significant that such an article appeared in JAMA because it's the most widely-read medical journal in the world.  Get the word out!
• Highlights of the recent CFSAC meeting in Washington - this article focuses on the meeting itself, on Days 2 and 3, rather than on the Science Day presentations on Day 1  (which I still plan to summarize for you!)
• Laura Hillenbrand's newest book, Unbroken, is scheduled for release on November 16.  Read all about it at this website, along with a long list of scheduled interviews and appearances (I hope she's able to handle all of those!).  Many of the events and publications scheduled will include author overviews, so hopefully, this will also be good PR for ME/CFS - there are some biggies listed here!
• Videos from the September 2010 Conference for Healthcare Providers and Patients, sponsored by OFFER (Organization for  Fatigue and Fibromyalgia Education and Research) are now available online.  The list of speakers and presentations is impressive - all the major players in ME/CFS treatment and research!

That's all the news for now.  I think I'm doing a bit better today.  I took a shower, so I'm resting from that, but I do feel less achy.  Have a good weekend!

More on XMRV and CFS/ME

I came across another couple of articles on XMRV this week that I thought might be of interest to you.

First is a brief article (actually a sidebar) called "Unraveling the Mysterious XMRV Virus" in a larger article on virus research at the University of Missouri.  The cool thing about this article is that it appears in a scientific news website completely unrelated to typical CFS/ME news - word is starting to spread about XMRV in all sorts of scientific research venues, which is great for us.

The other article is a very nice summary of XMRV basics, "An Explanation of XMRV Research So Far...", posted in one of the forums at Phoenix Rising by Bob.  If the scientific details have been confusing to you (as they have to most of us!), this is a clear and well-written summary of the basics to date.

Hope you have a great Halloween weekend!

Norwegian Study Finds XMRV in 62% of CFS/ME Patients Tested

Great news!  A new XMRV study was just published in Norway, confirming similar results to the original XMRV study done at WPI.  Here's an article explaining the findings:

Dr. Mette Johnsgaard of The Lillestrom Health Clinic tested 24 patients and 3 healthy controls for XMRV using the culture test and found that 14 were positive.

Of the negative tests, 11 were then retested with serology tests and 5 more positive results were found, bringing the total to 19 of 27. One of the positive serology samples was from a healthy control.

*The Lillestrom Health Clinic has now tested 80 patients and 50 are positive by either culture or serology test =96 a total of 62%.* This is very close to the 67% of positive patient results reported by Mikovits, Lombardi, et al., in* Science *in Oct. 2009.

The tests were done in cooperation with VIPdx labs in the USA.

More information about these results will be given on the 28th of November in Oslo at the XMRV/MLV seminar with Dr. Judy Mikovits. Details of the seminar can been seen here:
http://esme-eu.com/xmrv-mlv-seminar-oslo/category203.html  Register by writing to: post@esme-eu.com

The Lillestrom Health Clinic is currently cooperating with many international ME experts in order to share knowledge about testing, treatment and research. Dr. Johnsgaard is also cooperating with
international experts who specialize in infectious diseases (Borna virus), retrovirology and biotoxic illnesses (Shoemaker), a probable secondary phenomenon in ME.

*In November 2010, the clinic will launch a large international research project on Human Gammaretrovirus and ME. *

In Aug. 2010, Dr. Johnsgaard was interviewed by NRK (Norwegian National Broadcasting) where she confirmed the two first positive XMRV patients in Norway. With that interview Dr. Johnsgaard opened the public debate about ME and XMRV in the Norwegian medical and political environment. The same day, Norwegian politicians and doctors reacted positively in a follow-up interview on NRK (see links below)

Virusfunn gir nytt h=E5p for ME-pasienter:
http://www.nrk.no/nyheter/norge/1.7257026

Another link with health minister Laila D=E5v=F8y - Regjeringen b=F8r gj=F8=re mer for ME-pasienter :  http://www.nrk.no/nyheter/norge/1.7259180

Lillestrom Helseklinikken is situated just outside of Oslo, Norway and specializes in the treatment of ME and other chronic diseases. They have recently begun treating patients from outside of Scandinavia.  

Kind regards,

ESME Team

The European Society for ME is a non-profit group, operated entirely by volunteers. You can support ESME with a donation by visiting:
http://esme-eu.com/home/donate-article427-6.html
 

Sue again...just wanted to point out that the methods used in this study are those that Dr. Mikovitz was explaining in her presentation at the NJ Conference last week:  culture tests and using multiple methods to find all of the XMRV in all of the samples.

Further Clarifications to Mikovitz's Presentation at NJCFSA Conference

Much to my dismay, I have received more messages alerting me to other facts I got wrong or misunderstood or mistyped in my summary of Dr. Mikovitz's XMRV presentation at Sunday's NJ CFSA Conference.  Apparently, my mistakes are being discussed all over the internet. 

I've come to feel as if this blog is our own little, private place to communicate with each other - me and all of you who comment or send me messages - a place for friends to chat honestly and openly.  But, of course, nothing on the internet is private, and I should be more aware that anything I say here can (and will) be copied and repeated...forever.

So, in the interest of accuracy, here are some further corrections and clarifications:

• WPI found antibodies AGAINST, not IN, the envelope protein of XMRV. (I told you I didn't understand what she meant by envelope!)
• The first studies to detect XMRV (Urisman et. al) found partial sequences of XMRV (that is all that can be determined from PCR). WPI has since fully sequenced XMRV.
• Xenotropic doesn't mean human, it refers to a virus that can grow in the cells of a species foreign to the normal host species. Other mammals can have the XPR1 receptor too.  However, in her talk, Dr. Mikovitz DID emphasize that XMRV and PMRV are found in humans but not in mice.  Further, I misstated that MLV's are not mouse viruses (I got the terminology mixed up).  In fact, MLV's are mouse viruses, but there is confusion about this because MLV-related viruses (e.g. XMRV and PMRV) are not MLV's and not mouse viruses.  So, XMRV and PMRV are not MLV's (not mouse viruses) but they are only MLV-related human viruses.  Follow that?
• It was Tufts, not Johns Hopkins that tested 75 mouse strains.
• Retroviruses are not "constantly changing", but may recombine with other RVs or mutate over time.
• Cheney clinic is in Asheville, not Dallas.

 Once again, my sincere apologies for getting some of the facts wrong.  Please understand that this was a 90-minute long talk, Dr. M spoke very, very quickly, and as I explained before, much of the technology and terminology was new to me.  Copies of her slides were so tiny that I literally can't read them at all, so I relied solely on my own notes.

Thank you to those readers who have stood up for me in various public forums and who took the time to kindly help clarify these points.


(No comment to those who left me nasty messages!)

Corrections: XMRV Presentation by Dr. Mikovitz

It has been brought to my attention that I incorrectly implied in my conference notes yesterday that Dr. Mikovitz "discovered" XMRV.  She was not, in fact, the first researcher to discover this new retrovirus.  She began her presentation by crediting Bob Silverman & Eric Klein with the discovery of XMRV. 

Also, I mis-stated that Dr. Mikovitz didn't expect to find XMRV in ME/CFS patients - immune system abnormalities in XMRV positive prostate cancer patients made her think it might be implicated in CFS as well.

It seems I should have just skipped the history section of my summary yesterday...sigh...she covered that stuff briefly at the start of her talk (and she speaks really fast!!), so I didn't have thorough notes.  The rest of her presentation so blew me away that I was focused on all of that.

Sorry for the mistakes and any confusion.

NJ CFS Conference - Update on XMRV by Dr. Mikovitz

Thanks to everyone for letting me let off some steam and rant yesterday (not that you had any choice!).  I'm doing better emotionally today and a bit better physically, though I still have crash symptoms (which could also be herx symptoms from a new Lyme treatment - hard to tell).  Jamie is still badly crashed, which again is probably both from over-doing and herx reaction from new bartonella treatment.  More movies today, but I insisted on a TV-free hour so I could write a bit!!

So, I will attempt to summarize for you the most important points from Sunday's NJ CFS Association Fall Conference.  In looking over my notes, I realize that, although all the speakers were good, most of the new information I learned came from the XMRV update from Dr. Judy Mikovitz, the author of the original XMRV study and head researcher at the Whittemore-Peterson Institute, so I'll focus my summary on that.  Some of what she presented was in direct response to criticisms presented at last week's CFSAC meeting, so I'm covering the last conference first.

As I mentioned on Monday, Dr. Mikovitz's presentation was extremely technical and she spoke very quickly for over an hour.  I have a scientific background, and much of the details she discussed went over my head, so I'm going to focus here on the bottom lines and her conclusions - sorry in advance if I can't explain the details behind these or if I get something a bit mixed up!


XMRV - History

• Dr. Mikovitz' father (or maybe step-father) died of prostate cancer, so she devoted her career and life to finding the infectious agent responsible.  She's been working in this field for over 20 years.  Certain immune system abnormalities in those who were XMRV positive made her wonder if it might also be implicated in ME/CFS.
• Dr. Mikovitz also worked on HIV for many years and has a lot of experience with that retrovirus.
• Because other known retroviruses, like HIV, tend to mostly affect B and T cells in the immune system, that's where they first looked for XMRV - turns out those are NOT the best places to find XMRV.
• The body's antibody response to XMRV is very different from the response to HIV, so you have to look for it in different places within the immune system (WPI found antibodies "against the envelope protein of XMRV" - I didn't entirely understand what this meant but it's important and she emphasized it often).
• The first studies to detect XMRV found only sequences or parts of the retrovirus.  WPI has since fully sequenced XMRV.
• There are two types being found: XMRV and Polytropic MRV (which were found in the more recent FDA/NIH study).  Polytropic MRV is also referred to a PMRV.
• Although MRV (MLV-Related Retroviruses) have Muerine (i.e. mouse-related) in their name, Dr. Mikovitz emphasized that these retroviruses are not mouse viruses; they are only related to mice (MLV are Muerine Lukemia Viruses)  XMRV has ONLY been found in humans, not in mice (this is important in discussions of possible contamination later).  Tuft University has studied 75 types of mice, both those bred in labs and those found in the wild, and these retroviruses do NOT exist in mice.

Why is XMRV so hard to find and why are so many CFS/XMRV studies coming back negative?

• XMRV is showing great sequence diversity (at first, only sequences or parts of the retrovirus were found) - retroviruses can change, and different sequences or parts are present in different people and in different parts of the body.
• Patient selection criteria differs in different studies.
• Methods used in different studies so far differ GREATLY.
• WPI/Mikovitz first looked in B and T cells and found only partial sequences of XMRV and not very frequently.  It is standard procedure to look for retroviruses by looking for their DNA in cells (this method is called PCR).; however, they have found that XMRV is not always detectable this way.
• Next, WPI tried looking in plasma and they found more that way - not all studies have used plasma.
• How the samples are handled after they're drawn and before they're tested is critically important - it's easy to kill XMRV in the samples if they're improperly stored and handled.  Storage and handling have differed greatly in different studies.
• WPI has determined that some samples are negative by PCR testing (a method that looks for the DNA of the retrovirus) but are positive using alternate methods.  Some studies have ONLY used PCR.
• One of the methods commonly employed to find XMRV will only find it 10% of the time.
• WPI has found that it is necessary to use multiple methods of detection in each study in order to find all of the XMRV - most negative studies have used only one method.

What About Contamination?

• Some people are claiming that the positive XMRV studies in CFS are positive due to contamination of the samples in the laboratory.  Dr. Mikovitz addressed this argument.
• WPI tested ALL samples for mouse DNA and there was no evidence of contamination (plus, remember that XMRV does not actually exist in mice!).
• Both the WPI and the FDA/NIH studies rigorously ruled out contamination with extra testing.  ALL of this data was included with the original papers, even though there wasn't room to publish all of the background data.

 UK XMRV Study

• WPI started a study in March 2010 to look for HMRV (Human MLV-Related Viruses - both X and P) in UK ME/CFS patients.
• The study included 50 patients with ME who met the Canadian Consensus Critera, 50% male and 50% female, along with 50 controls.  It was a blind study.
• The 100 samples were tested blindly by two labs who had never worked with MRV or mice (to ensure there was no possibility of contamination).
• The labs first tested plasma and 48% of the ME plasma samples were positive for XMRV (all were also tested for mouse DNA and were negative).  Other samples were detectable only after culturing (some sort of special sample preparation).  In some samples, only the virus was detectable; on others, only the antibodies were detectable.  Multiple testing methods were necessary in order to find all of the XMRV positive samples.
• In all, 80% of the ME patients in the study were positive for XMRV.
• 4% of the controls were also positive for XMRV (in line with the original WPI study).
• Dr. Mikovitz emphasized that the XMRV was very difficult to find.  They have learned that subtle differences in storage, handling, and testing make a big difference and that multiple methods must be used to find it all.

XMRV Family Studies
(This is the part of the day that totally blew my mind)

• In January 2010, WPI did a study using samples from Dr. Cheney's clinic.  They tested not only CFS patients but also their families, including children, parents, and siblings.
• 81% of the Cheney CFS patient samples were positive for XMRV.
• Ready for this?  50% of all family members of CFS patients were also positive for XMRV, whether they had any symptoms or not.
• They constructed family trees for each family.  In addition to people with CFS, they also looked for family members with cancer and autism.
• They found XMRV positive: parents with CFS kids; kids with a CFS parent; kids with autism.
• In all, 54% of the parents tested were XMRV positive, 59% of the children tested were XMRV positive, and 82% of the kids with autism were XMRV positive.  They detected additional XMRV positive people in 16 of 17 families tested who had 1 member with CFS.
• Detection of XMRV in these samples required multiple testing methods to find it all.
• They have no idea how XMRV might be transmitted between family members.
• By the way, the possible link between CFS and autism is not new.  Other researchers have suggested it in the past because they see similar immune system dysfunction in kids with autism.

Politics?
(This part is really disturbing to me.  I like to believe that people are generally good and do what they believe to be right.  I know that's not always the case.)

• Are you wondering why we haven't heard about the amazing studies conducted by WPI in the UK and with families from Dr. Cheney's clinic?  Dr. Mikovitz says no one will publish them.  She said they keep submitting papers to various publications and they keep getting turned down.  There has been some confusion on this point in various discussion forums, but this is what Dr. Mikovitz stated during her presentation - that they can't get any of their papers published - I'm assuming that includes these two studies she described.
• Dr. Mikovtz said what's happening with XMRV and CFS reminds her very much of the early days of HIV research.  She said that just like back then, she has a drawer full of scientific studies no one will publish, but she will just keep on conducting studies and putting them in the drawer until things change.
• Dr. Mikovitz also said that some of the people who've been suggesting contamination are people who were involved with the original studies and who saw all of the original data, including those which proved contamination was impossible.
• Other speakers also mentioned that politics are involved.  The prevailing theory seems to be this:  if the CDC confirms that XMRV, a new, dangerous, and transmissible retrovirus, is present in people with CFS (and the CDC has estimated the number of adults in the US with CFS to be 4 million), then they have a huge public health crisis on their hands.
• Dr.  Mikovitz says that the evidence of XMRV in CFS is actually stronger than the evidence of XMRV in prostate cancer because of the more extensive testing methods used to date.
• Rumor is that the National Cancer Institute (NCI) has been told by someone high up in the government to pursue whether XMRV is involved in prostate cancer but should distance themselves from CFS.  Though I hate to believe something like this could actually happen, the speaker from NCI at CFSAC last week was the one who suggested that contamination might be responsible for the positive XMRV results in CFS.  Dr. Mikovitz said that person has seen all of the data proving contamination is impossible.

OK, I think that covers it.  Sorry this turned out to be so long, but I think it is extremely important for all of us to understand.   Hope you find this as enlightening as I did.

NOTE:  A few kind readers pointed out some errors I made in the above summary after I posted it, so I have corrected them as of 10/21/10.  Thank you to those who were kind enough to offer me their assistance.

CFSAC Meeting Online

The U.S. Department of Health and Human Services is hosting another Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting this week, Tuesday through Thursday, in Washington, DC.  I had hoped to go, but I'm on my own with the kids this week, so I can't risk the almost-certain crash that would likely result. 

Fortunately, there's an alternative for those of us who can't manage a trip to DC - the entire 3-day meeting will be broadcast live through the internet - tune in at this webpage.  Of particular interest is tomorrow's agenda - for the first time ever, the CFSAC is starting with a Science Day - a day filled with informative presentations from some of CFS's top doctors and researchers (including one on XMRV).  Check out the all-star line-up on the agenda.

So, I plan to tune in for much as I can tomorrow (working around nap time, of course) and parts of the next two days, as well (especially the public comment periods).  A friend of mine is attending and giving public testimony; she's one of our local CFS group and has two teen sons with severe CFS.  I'm sorry I couldn't accompany her to the meeting, but the videocast seems like the next best thing!