Not over yet : the CDC & the negative XMRV study
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.
Yep.
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.
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.
Yep.
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.
Did you read this?
ReplyDelete"The authors strenuously object to application of the Canadian case definition in other studies, stating that, “physical findings in persons meeting the Canadian definition may signal the presence of a neurological condition considered exclusionary for CFS.”
As far as I am concerned ME is a neurological disease and seeing as CFS is seen as the new term for ME which is WHO defined as a neurological disease, then this makes so little sense that all it can equal in my mind is massive corruption.
PS - hope that makes sense, I am really ill at the moment and my brain isn't what it once was!
No I hadn't seen that Elle, bless you, thanks .
ReplyDeleteIt could be welcome !
It just confirms that CFS is not ME and they need to start looking at ME - a neurological disease.
I'm sory you're so ill today Elle. Thanks so much for taking the time to send this key statement - much appreciated.
Greg
Thing is though - in that case, they should stop telling people with ME that they have 'CFS' - where they seem to define CFS as something that can never be 'detected'. (I for one would love to see the nonsense term CFS disappear from the face of the earth.)
ReplyDeleteDid any of you think about the following? What if when they stopped the presses for both studies whith opposite outcomes, they had to come up with a "logical" explanation to wurm their way out of all this. What if the CDC decided to emphasize that their study was done on "CFS" "non-neurological-symptoms patients". And what if the FDA, when (if) their paper eventually gets published adds a sentence that their cohort consists of "Canadian-criteria-chosen-patients-with-neuro-symptoms".
ReplyDeleteSo who are we afterwards to say anything anymore about yet another "null" XMRV study from the CDC, surprise surprise? They will say they studied a different cohort and that will be that. Nothing was deliberate, intentional, etc.
And doubt will continue to exist about to which "subgroup" we belong ...
the problem is that they refuse to recognize ME....they can't (well shouldn't be able to) have it both ways: either CFS is the same as ME, or if ME excludes one from having CFS, they need to actually recognize that ME exists as a valid diagnosis
ReplyDeletesince they made up CFS and ignored the reality of ME they just created a big mess
I am not sure how clear I am being - need to get to bed now