Friday, June 10, 2011

I See No Ships -- XMRV

"I see no ships" – attributed to Admiral Horatio Nelson after putting his spyglass to his blind eye
The politics of ME/CFS/XMRV require certain people to deny the existence of any objective evidence that patients are not just lazy or crazy.  They wouldn't admit to seeing XMRV if it spit in their eye while they were looking straight at it.
Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention – based on the correspondence they exchanged over a period of months – was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic."
Aside from the staggering costs to disability insurers if they had to pay out for ME/CFS/XMRV, there are too many people who have staked their careers on psychobabble; they (and their friends) are willing to continue to sacrifice the patients to keep their reputations and sizeable expert fees. 
Since those with the most at stake (patients) are not the ones who are in the laboratories, and most of us have never run a virology experiment, it's easy for those who don't want to find proof that they're wrong to not find what they're not looking for.  Laboratory science not being my strong suit, I have to trust the researchers at WPI when they point out that not a single true replication study has been done.  Different "recipes" and different processes have been tried and (allegedly) failed, but no one has done exactly the same things in the same way as WPI. 
"Allegedly" because I wouldn't put it past some of these clowns to doctor their results in order to report the result they wanted to find (or the government/insurance companies asked them to find).
Science, the journal that broke the XMRV news in 2009, has apparently caved to pressure from the Powers That Be and is asking Mikovits/Lombardi to retract the XMRV paper based on the number of people who aren't using the same method and therefore can't find the same result.  FDA won't approve an anti-viral (Ampligen) for a disease CDC says doesn't exist, and Science won't let stand a paper proving that CDC is wrong.  Dan Peterson has said this disease is all about politics ... in light of what's happened the past quarter-century, who can doubt him?
I have looked Dr. Judy in the eye from a distance measured in inches and she has assured me that the other studies haven't been done the same way and she stands behind her results. 
I choose to believe Dr. Judy, who strikes me as honorable and reputable, intelligent, and with the backbone to stand up to the male establishment who couldn't stand it that they were scooped in the 1990s by Elaine DeFreitas and are irked again that another woman has found what they couldn't with XMRV. 
Eventually, the truth will be accepted, that there is such a thing as XMRV, and it's not a lab contaminant.  The only contamination here is the nonsense being spread by those who refuse to accept the truth that XMRV exists.
Whether it turns out that XMRV causes CFS or is just an opportunistic infection that takes advantage of CFS patients' ineffective immune systems isn't something I have the proper education to guess.  But I don't have to guess at it that the WPI lab found XMRV in a majority of CFS patients.  And it makes sense to me that people don't develop antibodies to lab contaminants.  But what do I know?  I studied law, not medicine.
Most importantly: What seems to fall off the radar of some of the denialists is that in the same published paper XMRV was also implicated, by the reputable National Cancer Institute, in prostate cancer.  The attacks on XMRV are directed only at CFS and the upstart WPI.  I have not seen a single study claiming that men with cancer are also just imagining things.  No one is trying to debunk the XMRV/cancer link.  Why is that?
The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd.
                                                      — Bertrand Russell


CFS Facts said...

Dr. Judy's explanation

Lesley McLeod said...

XMRV has been identified as a human gamma retrovirus and it will remain identified.
The resistance of Governments to Fund the next step of the Research definitely shows the Politics involved in impeding the natural process of discoveries into human diseases.
The question is why?
There has to be secondary gain for the Government and / or those who do not want Replication Studies to proceed.
Absolutely Shameful, because their gain has a human cost.
The lives of everyday Mums and Dads and their Children as they battle a disease process that increasingly disables and kills.

Me, myself and ME said...

Thank you for you continued blogging.
I too have looked Dr.Judy in the eye and I KNOW that she has found XMRV without a shadow of a doubt.
Her detractors KNOW she has found XMRV in ME/CFS patients without a shadow of a doubt.
We all KNOW why they are doing this and it is not in the interest of us, the patients.
I do know that after speaking with Dr.Judy I now feel confident that her truth will out no matter how hard the powers that be try to suppress it.
The cat is out of the bag and there is no going back. Or as Dr.Judy herself said "The train has left the station".

Gabi said...

Thanks for posting. I wish I had the pleasure of meeting Dr Mikovits, I fully support her work and that of the WPI and those who try to thwart it will eventually come undone. The virus is there, we know it's there, the Government know it is there and they can't cover it up forever.