Tuesday, June 29, 2010

At War with the United States Government

"Those who cannot remember the past are doomed to repeat it." George Santayana

Part of my job as Patient Advocate for my thirty-six year old daughter, housebound in St. Paul, MN, is to follow ME/CFS research and treatment developments. In this capacity, I read the internet, consult with doctors and researchers, and attend CFS/ME conferences. I try to share my observations and experiences on this blog - for better or worse.

Recently, unusual things are happening in CFS/ME research. I wrote about Kerr and Huber in London - two lingering "strangenesses". My observations are taken by some readers as "conspiracy theories". I can assure you that the Patient Advocate does not believe in conspiracy theories. He believes in reality - and in his own observations. In my role as a Patient Advocate I am essentially an "observer". I listen to CFS/ME associated individuals - patients, advocates, doctors and researchers - and I make my own observations. At times I talk to and communicate with CFS/ME patients and researchers. Most of the time I am on my own - coming to my own conclusions through connecting the dots. Coming to certain conclusions is not as difficult as it is made out to be. I am guided by an attitude developed over years of dealing with doctors, lawyers, politicians, artists, and academics.

For instance the situation that I related about Jonathan Kerr is not a fantasy. It is real. The only question that can be disputed in the exact manner in which he was given the big "squeeze". Huber's situation (along with her buddy Coffin) is even worse than I imagined.

For the moment I am worried about the FDA/NIH XMRV study. Dr. Alter gave a talk at the end of May (reported by journalists in the Netherlands), where he revealed an FDA/NIH study confirming the findings of the October 2009 Science study of the NCI, the Cleveland Clinic and the WPI. The FDA/NIH report reveals that 80% of the tested CFS patients were positive for XMRV and 7% of controls. In giving this talk in late May, Dr. Alter obviously felt that this study was just about to be published - otherwise he would have been crazy to put up slides about it. From this it can be deduced that the results were known over a month ago, probably much longer than that.

In the meantime, the CDC, using their own primers, have been unable to confirm the findings of the WPI, the NCI and the Cleveland Clinic. They found the elusive "zero" XMRV. What else is new? They play their part and even overplay it. These are the same people who tripped up on positive samples given to them by the WPI prior to October 2009. These people at the CDC are the kind of neighbors that you do not want. They are trouble makers - and they are venal. They insist on being in control, and always have. Why would they change now?

Presumably the CDC thinks that their primers are state of the art and the best available. Presumably they think the NIH/FDA study is flawed. The NIH and the CDC are parallel organizations existing under HHS. Obviously the CDC put pressure on someone above them to block the NIH study.

So what is happening here? The straight skinny is that CFS/ME is at war with the United States Government. The CDC wants to deep six the FDA/NIH study. At the moment both studies are "on hold".

At this very moment our loving and supportive government officials at HHS are trying to "reconcile" these two studies. I hate to think of what the term "reconcile" means to them - especially in light of the leaked story from Holland. One thing is certain: If this story had not been leaked. no one would have ever heard of the NIH study. It would have been "disappeared". (Imagine what Dr. Alter is thinking at the moment. He must be a little bummed out). But the story was leaked - and now things are "difficult" for the HHS. I suggest that we make it more difficult for them. It will take someone more skilled than I to organize resistance against the HHS. But if there ever was a time, it is now.

I imagine that the CDC is going to try to delay things by insisting that the NIH test their samples. This idea is fraught with peril -as who can imagine what they might have already done to these samples to not have them yield any positive XMRV. You can see their devilish logic, as this might very well unseat the NIH study if the NIH cannot get positive XMRV results from the CDC cohort.

All this is highly unusual and speaks to a more serious and complicated game being played. We have two studies here and there is no "reconciliation" possible. It is too late for reconciliation - and the CDC is not to be trusted. These two studies should be published as is.

Otherwise, things will muddle along.

Without clarity, the WPI and others will continue their poorly supported, but highly significant, research. With clarity, these obstructionist in our government can be held accountable.

What will the future hold? More than likely, the confirmation will have to come from outside of government organization. The government does a poor job at protecting the health of their citizenry and it is corrupt. There are various independent possibilities for confirmation studies, but they are months away. In the meantime, research grants are being put off and applications delayed. Time is being wasted and various labs are having to answer skeptical questions all day long. It is a fine tactic, expecially when used against researchers with limited resources. Again we can see the measly fingerprints of the CDC as various trials were stopped, months of time and momentum lost, and studies had to be restarted, all for no good reason.


  1. The fortuitousness of that leak occurred to me too. However, the results could still be squelched -- it isn't as though the general public will know or care.

    The trick is to make them understand why they should care. We don't have a lot of time.

  2. Do you have a reliable source for the following info:

    "The FDA/NIH report reveals that 80% of the tested CFS patients were positive for XMRV and 7% of controls."


  3. You are right. The time is now. If we ever want real research published about XMRV, we need to let HHS know they cannot disappear this NIH/FDA study. Contact these people NOW!

    Patricia Carter