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The recent discovery of retrovirus XMRV raises more questions than answers for me. Not surprising, this is very new research. Speculation and theories explode as people wonder how, or if, this will impact their lives.
First theory. XMRV causes Chronic Fatigue Syndrome. A good anti-viral is all that's needed and we'll all be cured. We all like that one.
Another theory. XMRV does NOT cause Chronic Fatigue Syndrome. CFS has an as yet undetermined cause which hogties the immune system, allowing XMRV to flourish.
A similar raising and dashing of hopes occurred when we thought for one shining moment that the Epstein-Barre virus (EBV) was the culprit. Lots of people who don't have CFS carry EBV but they're not sick. Nor does getting EBV under control eliminate CFS. Maybe whatever causes CFS also leaves people vulnerable to proliferation of EBV. And now, of XMRV.
Here's a related theory. XMRV is not the cause of CFS, but it alters our DNA and triggers other viruses. This could explain the wide range of CFS symptoms.
Worrisome thought. If XMRV is the cause of CFS ... what if they can't cure it? Are we doomed to carrying a life-long virus that stirs the pot every once in awhile, causing life-stopping relapses? Must we learn to live with the ominous knowledge that we carry within us a ticking time bomb?
Let's speculate in another direction. The first response for many of us was elation. Then trepidation, as we realized this may be great for people who test positive for XMRV. But what if I don't test positive? While those with XMRV get treatment, will I be once again discarded to the medical / scientific Ignore list? Where the reaction of much of the medical community is a shrug, a scratch of the head, and a barely concealed yawn?
Will I now be twice rejected? First for having Chronic Fatigue Syndrome, and now second for having the "wrong" one?
Just a few of the thoughts that have caused many a CFS relapse and crash last week. Other stalwarts with CFS wrote letters, made appointments, posted online comments and wrote articles. Then, many of them were also levelled by their symptoms from the duress of responding, and they are now flat on their faces once more. Hoping that one more time they will regenerate and be able to get up, to face -- again -- an unknown future.
Resources:
Whittemore Peterson Institute for Neuro-Immune Disease
http://wpinstitute.org/xmrv/xmrv_qa.html
ME/CFS Forums at the Phoenix Rising
http://forums.aboutmecfs.org/index.php
ME/CFS Forums at the Phoenix Rising: XMRV / XAND
http://forums.aboutmecfs.org/forumdisplay.php?f=54
XMRV: The Puppet Master?
http://aboutmecfs.org/Rsrch/XMRVPuppetMaster.aspx
European AIDS Treatment Group: Chronic fatigue syndrome linked to infectious retrovirus XMRV
http://www.eatg.org/eatg/Treatment/Chronic-fatigue-syndrome-linked-to-infectious-retrovirus-XMRV
About.com: XMRV: Retrovirus Linked to Fibromyalgia & Chronic Fatigue Syndrome
http://chronicfatigue.about.com/b/2009/10/12/xmrv-retrovirus-linked-to-fibromyalgia-chronic-fatigue-syndrome.htm
Visit Jody's website and blog at http://www.ncubator.ca and http://ncubator.ca/blogger
Add a Comment11 Comments
Yes, good point. One positive thing is that the significance of XMRV could be clearer in a relatively short timeframe, because the discovery is specific relating to a retrovirus, so others can verify/falsify the findings. Existing retro-viral drugs can be testing straight away, but perhaps there is a one-in-then chance of that approach getting lucky. Perhaps we might have a feel for which direction this is heading in six months. I wouldn't expect a cure in a few years, but I feel during the coming months there will be a new level of research energy going on, and I expect the occaisional offical update perhaps more than once in the next twelve months. I remain hopeful on this one, it was such a nice weekend when the news broke, it was every sufferers dream to have such a definitive moment...
October 20, 2009 - 11:00amThis Comment