NEWSBRIEF: The Whittemore Peterson Institute (WPI) is now allowing a laboratory to temporarily offer the tests researchers used in the study linking XMRV to chronic fatigue syndrome (CFS or ME/CFS).
The chosen lab is Viral Immune Pathology Diagnostics (VIP Dx), in Reno, NV, which is also where the WPI is located. The institute says net proceeds from the test will be dedicated to further research.
For more information about the test kit, go to the VIP Dx website. At this time, this is the only lab test associated with the WPI research, although many companies are advertising XMRV tests online.
Pros & Cons of Testing
While the prospect of a positive test for something -- anything -- has a lot of appeal for those of us with a diagnosis of exclusion, does that mean you should jump at the opportunity to get tested for XMRV? There are good reasons on both sides of the argument.
(The "pros" listed below are relevant only if XMRV is a major cause or diagnostic marker of ME/CFS, and it's too early to know whether it is.)
The Pros include:
- Validation of your illness, for yourself, your family and friends, and maybe your doctors (more on doctors below). However, consider that we don't know how reliable the test is -- you could get a false negative.
- Further data & money for research, which may get us closer to a diagnostic test, better treatments and a vaccine. (Again, this only applies if the WPI researchers are correct about the strong link.)
- Possible directions for your own treatment (more on this below, too).
- Confirmation of the need for precautions, since the retrovirus may be transmissible through bodily fluids.
The Cons include:
- The high cost of the test kit, which ranges from $400 - $650, depending on which test you get.
- The lack of any proven, or even tested, treatments for XMRV and the conditions it may cause.
- The possible lack of acceptance of results from a test that's still considered unproven by the greater medical community. Your doctor may not accept the results, and also may be unwilling to give you untested treatments.
This is one of those decisions that everyone needs to make for their own reasons, based on their own situation. Also, keep in mind that the published XMRV study only looked at ME/CFS, and the possible connection to FMS is extremely preliminary at this point.
Will you get the test? Have you done it already? What was the result? What factors played into your decision, either for or against it? Leave your comments below!
Also See: The XMRV Discovery Series index
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This lab is a mess!! Good luck getting your lab results. I had other tests done with them (before their XMRV designation) and it took almost a month to get the results. On top of that single customer service representative is highly unprofessional. Half the time when you call them you get a voice recording to leave a message…then no one gets back to you…..If feels like there are 4 people with a microscope working in a basement…….SR
I think your comments are bit unfair. Diagnostic blood tests often take time to show up their results, so maybe that was why you had a long wait previously. It is known that this lab is a small one and is most probably flooded with requests for the XMRV test as this disorder is worldwide. At least people in the U.S. (if they choose) have access to it, many, many, sufferers (like myself with a history of 35 years of ME/CFS and live in the u.k.) , with varying degrees of the illness worldwide do not, at this moment in time, but I am sure most people will understand and await results………….BT
I am also in the UK, and have opted for a slightly different approach to testing, and that is to eliminate the possibility of Hepatitis B, also a retrovirus, having already had HIV eliminated as being a possible problem through having many tests, and knowing that I have never been in a position to become infected with HIV. I have never given positive tests for Hepatitis B or HIV, despite many tests. The next step is to test for retroviral infection in general, not a specific retrovirus. If this is positive, then I shall know that I have a retroviral viral infection, but I shall also know that it is not HIV or Hepatitis B. If the test for retroviral infection is positive, even though it does not prove that it is XMRV related retrovirus, this does not stop treatment from being given. The fact that my white cell/lymphocyte count remains low, strongly suggests some form of chronic viral infection is present that my immune system cannot tackle, and with HIV and Hepatitis B not being present, does tend to point towards XMRV related retrovirus as being the cause of my ill health.
The Hepatitis B virus is in fact a hepadnavirus. It replicates in a similar way to retroviruses, but isn’t a retrovirus. The only retroviruses known to infect humans are HIV, HTLV, and now XMRV.
Thank goodness for the WPI. Even if transpires that XMRV is not the cause of CFS / ME / FM it has done a great service in raising the media profile of this terrible illness. If you suffer from the disease mark yourself on this map designed to identify CFS “hotspots”: http://xmrv.me.uk/me-cfs-global-map.php
Personally I’d wait until before getting tested for XMRV – a lot more research needs to be done.
In response to Andrew Porter’s comment – Andrew – I am a UK based writer though I have had to give up work due to my illness – when symptoms allow – I have been tenaciously researching the illness – I have had the test posted on this site under the headline cause-mechanism-test in May http://tinyurl.com/mudk9m
I have been in touch with two of the main researchers and it seems this test along with the XMRV test and findings are the most significant of the moment.
I have started a website which will report on my own story and recovery – it is very much in embryo but i would love to hear more about your approach to discovering your retroviral status (i too have a v low white blood cell count) please contact me via http://www.meddsupport.com (M.E & Digestive Disorders Support)
I have tested positive for the xmrv virus. The pcr-infectious and the culture-latent. I was tested at VIP labs in Nevada. Have had fibromyalgia for over 10 years
Janet Kirland,
I’m curious as to how you are now doing 1 yr after your posting & testing positive for XMRU. Have you found any treatments to be successful? I have been diagnosed with fibromyalgia and “chronic Epstein-Barr” for over 20 yrs. I am currently unable to work and on FMLA leave but can’t find a doctor that might be able to do anything. Haven’t been tested for XMRU yet and wondering if it would be worth it. Has anyone in the US qualified for SS disability? If so, how did you go about doing it? I’m only able to function for a couple hrs at a time without naps and resting, memory and logic are a mess, sore throat is constant, no energy, and of course, pain from fibromyalgia. Savella is helping some with that but still unbelievable exhausted. Even driving to town is almost more than I can handle. Unfortunately, we really need my income. Any suggestions as to treatments will be greatly appreciated.
Just wondered if you have any more answers yet? I’ve tried eating gluten free products and it’s helped.