NETWORK POSITION ON XMRV - Where Do We Stand? By Lydia E. Neilson, C.E.O.

Message from Lydia E. Neilson, M.S.M., Founder
Chief Executive Officer
National ME/FM Action Network

As most of you know, 4 papers were published in the journal of Retroviroligy while a 5^th commented on them pointing out how easy it is to contaminate lab experiments involving the XMRV virus. The authors themselves disagreed on the interpretation of their data. One senior author stated that he just wanted to point out how easy it is to test positive for XMRV, even if the person is actually negative, if a tiny bit of the mouse DNA gets into the sample tested.

There is no need to get upset about these findings in the latest papers as it did not prove the other studies who did find the retrovirus wrong. It only means that those testing the XMRV samples need to be extremely careful because of the possibility of contamination. Something that researchers are very well aware of and don’t need to be reminded of.

The way to look at the latest findings is that they are doing research and that for any negatives found, the researchers who are way ahead of this research, can easily rectify any negatives that are being thrown in the way of solving the problem of XMRV. No one would be going through all this trouble if they had actual proof that it doesn’t exist.

Take pride in the fact that we are being taken seriously and research is ongoing. We know that both XMRV and MLV has been found. Scientists are hard at work to discover what these findings mean in regards to ME/CFS and what role, if any, it plays in the illness. Once that is established, the research on treatment can go full speed ahead.

Hang in there everyone, we are getting there.

Lydia E. Neilson, M.S.M.

August 24, 2010

In October 2009, a study was published associating Chronic Fatigue Syndrome with a particular retrovirus called XMRV.  Four subsequent published studies failed to find XMRV in patients with CFS.

Yesterday afternoon, a new study was published by the U.S. National Academy of Sciences.  This study again failed to find XMRV.  However, XMRV is part of a broader family of retroviruses called Murine Leukemia Virus (MLV)-related viruses.  The study found evidence of MLV-related viruses in 32 of the 37 patients they tested (86.5%), and in only 3 of 44 healthy volunteers (6.8%).    This means that the retroviral theory for CFS is still very much alive. It has been expanded to looking at the broader range of retroviruses.


The position of the National ME/FM Action Network is that this announcement is very exciting.  It has the potential to lead to a better understanding of CFS and to prevention and treatment strategies.  Retroviruses may also be a factor in related illnesses like Fibromyalgia.  However, we recommend that patients be cautious until more research is in place.  The authors themselves identify the need for more research into
-whether the same strong association with MLV-related viruses is found in other groups of patients with CFS
-whether these viruses play a causative role in the development of CFS, and
-whether they represent a threat to the blood supply.

There is a need for much more research around the world but also here in Canada.  The Canadian Institutes of Health Research (CIHR) is the primary funding organization for health research in Canada.  CIHR maintains a data base showing the grants it has funded recently.  The database shows over 6,000 grants worth over $1.5 billion.  Not a single grant descriptions even mentions Chronic Fatigue Syndrome.  We encourage you to contact your Member of Parliament and ask for immediate funding for follow-through research.

We are monitoring the response of the Canadian media to this announcement.  The release prepared by Associated Press has already been picked up by CTV, CBC and by the Winnipeg Free Press.  We expect it to be picked up by other media.  We encourage you to add your comments where possible.

Lydia E. Neilson, M.S.M., Founder  and Margaret Parlor, President
Chief Executive Officer
National ME/FM Action Network