I felt compelled to emerge from my crash to comment about,
A timely question here might be the following: "When is a "sense of urgency" hysterical? And when is it heroic?"
The Cancer Link
An interesting addition to this thread would be the finding that a disproportionately high percentage of patients who had ME/CFS for 20,30 years have been presenting with clonal T-Cell receptor gamma rearrangements (a danger signal for cancer), and that they have indeed been coming down with deadly lymphomas. Additionally, the rate at which these lymphomas present is far outside of the epidemiology that one would expect. In other words, this is a massive red flag arguing for ME/CFS - and XMRV - to be taken seriously.
The Viral Cardiomyopathy link
Additionally, a quick look at the abundant research on viral cardiomyopathy reveals that opportunistic viruses commonly associated with ME/CFS (EBV, HHV-6, CMV, Cocksackie-B, Parvovirus B19 etc) are known to also cause viral cardiomyopathy. Just do a PubMed search of "myocarditis and virus". While some posters might scoff at the mortal risk of ME/CFS, those of us with biopsy-confirmed viral cardiomyopathy or lymphoma know better. The stark reality is that viral persistence in the myocardium - in PVB19 myocarditis for example - is associated with progresive cardiomyopathy and death. In other words, you need to eliminate the virus - or else. And this is certainly borne out in the stats in ME/CFS patients with heart failure (see Jason's work on this), who are dying decades earlier than what one would expect.
Mikovits is in good company
The fact is that Mikovits is privy to far more information on XMRV than armchair posters who ridicule the potential for a pandemic of mammoth proportions. Consider the words of Stewart le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at the US National Cancer Institute (NCI). As he commented in the Wall Street Journal,
NCI is responding like it did in the early days of HIV.
So why isn't le Grice called hysterical?
Given the alternative of listening to naysayers who don't acknowledge the devastation this disease wreaks on the living - much less the early mortality statistics of ME/CFS - and the known linkages with lymphoma and viral cardiomyopathy - or listening to Mikovits who is "plugged in" to the reality of morbidity/mortality in ME/CFS (and indeed to the linkages with other neuro-immune diseases such as ASD), I'll choose the latter.
WHEN will tangible steps be taken to prevent XMRV transmission internationally?
Let me put it this way:
Bottom line, there are a myriad of preventive measures that could be initiated NOW to prevent the transmission of this virus which has destroyed so many of our lives. With all due respect to the naysayers - and of course you are entitled to your opinion - I would argue that you don't "get" how serious, life-destroying, and fatal this disease is.
- If I were scheduled for elective surgery in June of 2010 - in which there were an excellent chance that I would need potentially tainted blood products - and I knew about the risk of XMRV, I would most certainly postpone my surgery until I was assured that the blood had been screened appropriately.
- If I were pregnant and about to give birth, and I knew about XMRV, I would insist on the kind of measures that HIV patients are afforded, to reduce transmission of a retrovirus to the baby.
- If I knew that I would be killed in a car accident tomorrow, and that my organs would be donated to some hapless victim, I would scratch out my authorization for organ donation
- If I were entering into a sexual relationship, I would insist that we used a condom.
- If I shared a toothbrush with someone, I would stop!
- And of course, if I were in one of the blessed remissions of this disease, and wanted to donate blood - I wouldn't!
- The list goes on....
Our concern isn't driven by hysteria. It's driven by compassion for the poor souls who will unwittingly and unnecessarily stand to contract XMRV as a result of delayed and concerted action by our international authorities. I would not be at all surprised if October 8th 2009 were to be used as a watershed date in future class action suits against institutions not taking appropriate measures to protect their patients from XMRV. Just how long do we have to wait - and how many people will be unwittingly infected - before there is concerted action on XMRV?
Thank heavens there are bold souls who speak the truth, fighting for accelerated ACTION on XMRV! Dr Mikovits has never struck me as someone who cares about what's "popular". She's doing what's right. And I'll bet the naysayers a Canadian "loonie" that she will be proven to be heroic, not hysterical, for her appropriate sounding of the alarm on XMRV.
All that is irrelevant. She comes across as hysterical, and that damages her credibility. That's the only relevant point here.