By Alan Cocchetto, NCF Medical Director © 2015

From Fall 2015 Forum

The “Just Ask!” column is intended to act as a means for patients to inquire about issues related to the NCF’s research activities. This column is NOT intended to act as medical advice in any way, shape or form! The National CFIDS Foundation assumes no responsibilities for any action or treatment undertaken by readers. For medical advice, please consult your own personal healthcare providers

Q: Many CFIDS patients got very excited about the possible involvement of XMRV in their disease until it was proven otherwise. Did the NCF have patients, from their cohort, who tested positive for XMRV?

A: The NCF wrote a column on XMRV previously where we reported that XMRV involvement did not fit the epidemiology nor the pathology associated with CFIDS in our cohort ^[1]. As such, we received much “negative press” on-line from the patient community at that time. At the time, the NCF wrote that, “A 1991 paper by David Bell, M.D. on a cluster of pediatric cases may shed light as to whether or not XMRV fits the epidemiologic profile for the disease ^[2]. This paper provides information on the Lyndonville outbreak. The risk factors, found to be statistically significant, identified to be associated with CFS were raw milk and raw eggs; exposure to dogs in the house and cats on the property; hot air heating source; and appendicitis. Unless proven otherwise, the NCF’s medical committee does not believe that XMRV fits this particular epidemiologic profile.”

Ironically, Dr. David Bell was a staunch proponent of the XMRV theory in an interview with the Wall Street Jounal ^[3]. Given Dr. Bell’s knowledge of radiation and its involvement in the development of CFIDS, this surprised the NCF at the time ^[4].

You asked if our patient cohort tested positive for XMRV? For those who were tested in our cohort, these patients tested negative for XMRV.

References:

1. National CFIDS Foundation comments on XMRV; Winter 2009-2010 Forum; www.http://ncf-net.org//forum/2010winter2.htm
   
   
2. Risk factors associated with chronic fatigue syndrome in a cluster of pediatric cases; Bell KM, Cookfair D, Bell DS, Reese P, Cooper L; Rev Infect Dis. 1991 Jan-Feb;13 Suppl 1:S32-8.
   
   
3. The puzzle of chronic fatigue; Amy Dockser Marcus, March 5th, 2011; Wall Street Journal; www.wsj.com/articles/SB10001424052748704005404576176823580854478
   
   
4. World famous CFIDS/ME physician is aware of radiation connection to disease; NCF National Forum; Fall 2012; www.ncf-net.org/forum/2012fall3.htm