Sunday, September 19, 2010

First Glimpse of the XMRV Positive Survey Results

Results from 38 completed surveys - 9/18/2010
** See below for abbreviations **

The XMRV Positive Survey was launched on May 12th 2010 on International ME/CFS Awareness Day. The initial response was good. Thanks to the 25+ people who took the time to answer the survey questions in the first few weeks. Over the summer, the survey was not very active. The surge of XMRV testing that had happened between December and February 2010 had slowed down. Patients in the U.S. were waiting until a serology test became available. Patients in Europe waited too. The proprietary XMRV co-culture test that Red Labs has licensed from the Whittemore Peterson Institute has only recently become available.

Now patients are starting to get tested again. In an email, a representative from VIPdx reported that already more than 1000 test kits have been requested. We anticipate that over the next few months, hundreds of people will learn that they are infected with a human gamma retrovirus. If you are one of them, we invite you to take the XMRV Positive Survey. You will be contributing to a growing understanding of how XMRV and MLV-related viruses are associated with disease.

As of September 18, 2010, 38 people have completed the survey. This is what we know about them.
  • They range in age from 11 to 73 with the average age being 47
  • 32 live in the US; 4 live in the UK; 1 lives in Canada; 1 lives in Norway
  • 100% suffer from a chronic disease
  • 24 out of 38 (63%) cannot work at all
  • 11% are completely bedbound
CFS = Chronic fatigue syndrome; ME = Myalgic Encephalomyelitis; FMS = Fibromyalgia syndrome; MCS = Multiple chemical sensitivity; IBS = Irritable bowel syndrome; POTS = Postural orthostatic tachycardia syndrome; NMH = Neurally mediated hypotension