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X M R V |
Xenotropic murine leukemia virus-related virus A Newly Discovered Retrovirus |
Information for people living with Chronic Fatigue Syndrome / Fibromyalgia / ME |
The currently available XMRV test is a DNA PCR. To accurately diagnose an XMRV positive person, the DNA PCR needs to be combined with the XMRV antibody and live virus testing. All three need to be done to confirm active or latent infections for the clinician to know what to treat. Not all three tests are commercially available at this time. Most insurance companies will not reimburse for the laboratory fee which is anywhere from $400-$900 dollars. Currently, an ME/CFS patient’s treatment would not be different based on positive test results. It will take at least 1 year and perhaps a decade before treatment is available specifically for XMRV. Therefore, IT IS OK TO WAIT. In another 6-12 months, more will be known about XMRV, tests will be validated, and hopefully, insurance will reimburse. |
Should I be tested for XMRV? |
Make an appointment with your physician and discuss the pros and cons of testing. In some states, patients can order their blood tests and receive the results without a physicians order. THIS IS DEFINITELY NOT RECOMMENDED. ME/CFS is multifactorial with many complicating co-factors that will be overlooked by proceeding without physician input. |
What should I do if I want to be tested? |
It may mean that XMRV is not connected with ME/CFS. It may be a false negative, especially if done before the diagnostic tests are validated. It may mean that at the time of the blood draw the virus was not activated. It may be that ME/CFS has subsets of patients and not all will have XMRV. It may mean……. For all these reasons, you need to discuss it with yourphysician. DO NOT tell yourself that if the XMRV test is negative, that nothing is wrong, that there is no hope, that all is psychological, etc. Your CFS physician will know that those statements are incorrect. |
What do I do if my test is negative? |
Your physician will need a printed report from the laboratory before advising and discussing a treatment plan. DO NOT DONATE BLOOD OR BECOME AN ORGAN DONOR. Consult your physician before becoming pregnant or breast-feeding since transmission is still unknown. Professional counseling maybe beneficial to help with coping mechanisms, how to discuss results with family members, etc. XAND (XMRV Associated Neuro-immune Disorder) has been proposed as a diagnosis for symptomatic people with a positive test result. This may take years to be approved through coding guidelines. Until there is a specific diagnostic code for XMRV, code 079.50 for retrovirus, unspecified, will be used on claims. |
What do I do if my test is positive? |
You can be the energy and voice for those that are unable. Become knowledgeable. Pass on the knowledge. Become active in WPI and/or CFIDS Association. Write e-mails to the government. Write to insurance companies for better coverage. |
What can I do if I know someone with CFS / ME / XAND? |
"Researchers at the Whittemore Peterson Institute (WPI) in collaboration with the National Cancer Institute and the Cleveland Clinic have recently discovered the presence of XMRV in blood samples from patients diagnosed with ME/CFS..." |
STAY INFORMED. THE FOLLOWING WEBSITES ARE RECOMMENDED FOR ACCURACY. BE VERY CAUTIOUS OF INFORMATION ON BLOG SITES, FACEBOOK, TWITTER, AND ENGINE SEARCHES AS THERE IS AN ABUNDANCE OF MISINFORMATION. HTTP://WWW.WPINSTITUTE.ORG HTTP://WWW.CFIDS.ORG XANDINFO.ORG |
The following web address is a very easy, user-friendly way to write/e-mail to government officials, committees that oversee different aspects of ME/CFS, and news media. Besides the usual content of funding, recommendations to move XAND/CFS/ME out of the current department of the CDC into infectious diseases/virology and move the CFS advisory committee (CFSAC) from the Office of Women’s Health to report directly to the President as the XAND/CFS Council to the President. HTTP://CAPWIZ.COM/CFIDS/HOME/ |
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