October 27, 2010

The Question of XMRV

Lately there has been a lot of discussion in the media about new research on chronic fatigue syndrome given the new discovery of the XMRV retrovirus last October.  Having suffered from the illness for 7 years and feeling like managing my symptoms has become increasingly difficult, I have been following these studies with great interest and hope.  I have always felt as though every doctor I’ve seen (who believes in my condition) only has the capability to treat my long list of individual symptoms rather than their underlying cause.  And with what result?  Medications, medication, and more medications – all with potential interactions and side effects.  It is a nightmare. 

With each new treatment I have to ask myself a series of questions: Is this medication working to treat the symptoms it is designed to?  Is this medication producing sides effects or interacting with other medications?  If so, are these new symptoms worse than the original symptoms or better? If they are better, how will they affect me long term (aka will they create a larger problem that will need to be treated with a new medication).  Long story short, it is constant trial and error and a lot of headaches.

Therefore, when I heard that there was a possibility that chronic fatigue syndrome could be explained by a retrovirus – a legitimate underlying cause – I was hopeful, yet cautious.  As a Sociology student I like to find any excuse to incorporate the topic of chronic fatigue syndrome into my schoolwork so I conducted a research project on the condition’s portrayal in the media since its discovery. Using the keyword function in the Lexis-Nexis Academic database I searched for all articles containing the phrase “chronic fatigue syndrome” and selected 43 articles from international news sources dating from 1987-2010.

Here’s what I discovered: In all 43 articles that I read, each one posited a possible theory for chronic fatigue syndrome, a total of 15 different theories on underlying reasons for the illness (including traditional and alternative medicine).  Furthermore, each theory claimed to be a step closer towards finding a cure.  So the question remains: is XMRV different?  Is this the one we’ve been waiting for?  In my opinion, it is too soon to tell.  However, that does not discredit the wonderful advocacy and awareness that has been generated by the finding of XMRV.  This new research has helped to unite the chronic fatigue community and started to legitimize the illness to the public.

As far as how to proceed with treatment and making the decision of whether or not to get tested is a personal question that we all need to answer for ourselves.  Last week I began seeing a new chronic fatigue specialist and asked his view.  In his opinion, the drugs currently being used to treat XMRV (which are drugs that have been proven to treat HIV) are very toxic to the body so users need to monitor their liver function etc.  HIV sufferers have no choice but to use these drugs to prevent AIDS and death, however, chronic fatigue patients will not die from their condition.  In addition, he believes that the research surrounding the retrovirus is insufficient and is not pleased with the precedent being set by people using these drugs.

Before this doctor’s visit I was planning on being tested.  For me it would represent some peace of mind that my illness is quantifiable.  However, now I have rethought that position.  If my test did come back positive for XMRV I would not feel comfortable trying to find clinical trials in this early phase of research.  Therefore, it is my decision to wait and continue following the progress of his research.  I am hopeful that in my lifetime a cure will be found for this horrible illness and society will finally recognize the struggle of chronic fatigue sufferers.  In the meantime, I am going to stick to the medications that work and try a few more.  I am not looking for a magic pill because at this point I don’t think it’s out there (at least for me).  My ultimate goal is improved management of my symptoms and getting over my most recent flare so that I can get back to school and finish college. 

Some questions to consider:

What is your opinion of the XMRV research?

Has anyone been tested?

Is anyone being treated for XMRV?  What is your experience?


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