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Only a few short years ago it was determined that XMRV was a highly likely potential cause of chronic fatigue syndrome, otherwise known as CFS.  Further studies, however, have only proven that the virus may not be a link in the cause behind CFS after all.

Chronic fatigue syndrome is a disease that is characterized by a constant fatigue and inflammation that can last for years.  It is estimated that approximately 1% of the world’s population is affected by CFS.  Though the etiology of the disease is unknown, recently it was thought that the XMRV may have a relation to CFS. 

XMRV is a virus which can be transmitted through transmission of blood, intravenous drug use or by any other blood bourne route.  It was still unclear whether or not other modes of transmission (such as sexual or respiratory) could transmit the disease.

XMRV (also known as xenotropic Moloney murine leukemia virus-related virus) is a retrovirus that was found in the tumor tissue of those who had prostate cancer.  The XMRV nucleic acid was detected by polymerase chain reaction in the blood of 68 out of 101 samples, or 67% of individuals tested who had CFS.  Almost two thirds of CFS blood samples had antibodies for the virus as well, leading researchers to believe that XMRV was a leading cause of CFS. 

It was believed that XMRV could potentially cause CFS as it is constantly present in the high titers of the blood. This, in turn, would lead to a continuous and long-term immune response from someone with the virus. 

Recently however, two “damning” papers have been published in Science that proves otherwise.

Jonathan Stoye, a retrovirologist at the National Institute for Medical Research in London has recently said that the recent studies about XRMV and it’s relation to CFS are a “bust”.   He was also one of the largest proponents to the association between XMRV and CFS. 

“People who are interested in the condition will have to move on,” Stoye said.

These research results change a lot for a lot of people, with up to 17 million people worldwide being affected by CFS.  A leading researcher of CFS, Anthony Komaroff, has said that CFS has always been met with a lot of skepticism for many scientists.  He fears that this will only further cause doubts of the existence of CFS.  “That, in my mind, would be an intellectually inappropriate way to respond,” he says.  “… beyond XMRV there’s evidence of an underlying biological process and infectious triggers that we need to understand better.”

Komaroff is not alone in believing that this latest research disproving the link of XMRV to CFS will have a negative effect on validating CFS.  Simon Wessley, a psychiatrist at King’s College in London is reviled by many who suffer form CFS by emphasizing the neuropsychiatric aspects of the syndrome.  He feels that the XMRV studies will have a negative effect upon the most recent CFS research.

At a more recent workshop on CFSW,  a retrovirologist at Tufts University in Boston, John Coffin, made a plea to those who suffered from CFS.  “We really went in with the idea of being able to push this field forward,” he said.  “Nobody went in with the idea of disproving this.”

The lack of a link between the virus and CFS has been met with great criticism, causing a lot of scientists to feel abused or “absolutely appalled” by the treatment that they have received as a result.  Coffin is concerned that “this will convince another large group of decent scientists to say: oh no, I would rather go find the gene for homosexuality or do work on images of the prophet Mohammed to do this.”

Paul Kellam, a virologist at the Welcome Trust Sanger Center in Hinxton, UK is a bit more hopefully however:  “I think we’re in a transition period at the moment. We’ve just got to wait for the dust to settle, but I think it will galvanize the people in the end.”  Part of the reason why Kellam feels so hopeful is that advances in biotechnology will allow those who are interested in studying complex syndromes such as CFS of enigmatic origin to be able to do so effectively.  There are biomarkers of the condition, and gene scans and whole genome sequences from patients with CFS will be able to help single out any variations that there could be that would determine if a person is more likely to develop this condition.

Kellam still does acknowledge that finding out what triggers CFS will be more difficult.  One single and infections agent, such as XMRV, is very unlikely to be able to explain this condition.  He does say that in order to decide what actually causes CFS, and determine who has the debilitating condition, requires better diagnostics. 

“This is essentially preventing us from moving forward on good solid research that deals with biomarkers, diagnoses and eventually treatment,” agrees Dennis Mangan from the US National Institutes of Health in Bethesda, Maryland.

Currently an approximated six million dollars is spent on CFS research, with another four to fourteen million being spent on conditions that are relevant to CFS, such as pain and exercise. 

The NIH, Mangan says, is looking for ways to better support the CFS research.  “It’s an illness that’s not going away and the NIH is not going to turn its back on it.”

The MRC in Britain has acknowledged that this is a debilitating disease. Currently they are accepting all research proposals for a new program which is devoted entirely to CFS. 

The goal of the program is to try and draw in any high end scientists into the field to better improve the study.  “Part of the difficulty is that we don’t have very many good scientists working in the field,” says Stephen Holgate, an immunopharmacologist at the University of Southhamptom School of Medicine, UK.  The ultimate goal is for CFS to be reviewed and studied from a “fresh view”, says Holgate.