So okay, while I was holding Linda all day yesterday, until she collapsed in almost total despair and agony yesterday evening and my heart roared in helplessness, the CDC chose to publish not the positive XMRV study but the negative one.
The one that reckons the search for "XMRV in CFS" is over .
Oh it does, does it ?
Well hooray : wouldn't that suit the Insurance Industry right down to the ground ??
Now here's the thing :
NO WONDER THE CDC STUDY WAS NEGATIVE. It did't study genuine ME patients :
1. Half of the patient cohert had not even consulted a physician !!
2. Three quarters of them had a "gradual onset" - Linda's was literally overnight, or so it seemed 17 years ago.
As Cort Johnson brilliantly declares on Phoenix Rising this was, to say the least , the "CFS -Lite" Cohort ; actually I'd like to suggest the "ME-free" Cohort.
You see, the WPI study went to a lot of trouble to correctly select participants according to the Canadian Definition. Oh but that's been criticised as "too inclusive" apparently !!
It's the hoary old moving of the goalposts , that's what this study is, the same hoary old moving of the goalposts that has characterised the CDC's involvement n ME all along .
You shake your head, you shake your head....
Turns out they used the wrong test tubes to collect the blood.
The CDC apparently is unwilling - what the hell..? to use test tubes laced with Sodium Heparin, you know , the ones the WPI use. Where they really interested in finding the virus at all, asks Dr Vernon.
It really doesn't look like it, does it ??
Hold on to your hat :
Plasma was collected from 18 participant in Georgia : using tubes not suitable for plasma collection !
I'm telling you....
Dr Vernon writes :
"the explanation for not finding XMRV in these studies is simple - this was a study designed not to detect XMRV using a hodge-podge sample set." Yes to that.
If the researchers had to live with the all-embracing agony Linda my wife has to live with day after day, for decades on end, oh yes, I bet they would have made very sure they were studying ME patients, especially the severely affected.
So, there we have it : more delay. Endless f...... delay. Of course, of course...
Just get on with it you two , you holding your wife, just get on with it
I had reason to be reading Randy Shilt's "And the Band Played On" yesterday, that terribly beautiful book about the AIDS struggle : so awfully similar to ours.
If I could just paraphrase, Larry Kramer :
If this CDC study doesn't scare the shit out of you we're in real trouble. If this study doesn't rouse you to anger, fury, rage and action, people with ME may have no future on this earth. Their continued existence depends on just how angry you can get.. (cf March 7 New York City, pg 244 , Larry Kramer.)
Is my wife dying ? It sure felt like it yesterday - and the year before, and the decade before that....
The shameful history of the AIDS struggle, same old, same old, was once described by Cleve Jones as the "story of bigotry and what it can do to a nation." Change that to "corporate interests" for ME and there you have it in a nutshell.