Monday, March 7, 2011

"The other Dr. Peterson"



For some time now I have been wanting to write, as a matter of curiosity, about "the other Dr. Peterson". Dr. Phillip K. Peterson is Director of Infectious Diseases and International Medicine of the Department of Medicine at the University of Minnesota. Between the years of 1988-2000 he organized and ran a CFS clinic at Hennepin County Medical Center in Minneapolis. Hillary Johnson first told me of the existence of Dr. Peterson - in regards to my desperate and unsuccessful attempt to get a doctor for my daughter in MN. Dr. Peterson appears several times in Osler's Web, portrayed in a favorable light. I direct the interested reader to her incredible book. (Osler's Web is actually Hillary Johnson's second most incredible book, the first being My Mother Ruth:a memoir of love, loss and art. - mymotherruth.com)

One of the things that I try to do is facilitate relationships between people on an individual basis. Dr. Peterson is at the end of his career, and no longer practices medicine with CFS patients. I have written to him, trying to get him to connect to the WPI, trying to solicite suggestions for physicians at the WPI clinic, but it seems my efforts are too little and too late - I think Dr. Peterson is out of the CFS business, now for many years - and for reasons undisclosed.

Dr. Peterson recently gave a Grand Rounds on CFS at the University of Minnesota, and this one hour lecture can be viewed here. I don't imagine that there are many Infectious Disease doctors giving Grand Rounds lectures on CFS at major universities. Perhaps I am wrong here. The lecture contains an unidentified CFS sufferer, a woman who formerly was a cardiologist and an avid rock climber. From the video it is obvious that she is "one of us". I wonder who she is? If anyone knows her, will they please contact me?

Some will find items to object to in this lecture. Others will be more forgiving, as Dr. Peterson was in on CFS as a clinician and researcher quite early and in a very serious way, combining clinical work with serious research. His group did a number of double blinded placebo controlled trials examining IVIG, florinef, and cytokines. His most important paper was a 1991 paper entitled CFS in Minnesota that documented functional severity of this patient population that was equal to heart disease and worse than various cancers and other chronic illnesses.

To me this whole situation is a little bizarre. From this investigation of Dr. Phillip K. Peterson, I am led to understand that twenty years ago serious work was being done in CFS in Minnesota. What happened? Where have all of Dr. Peterson's 390 patients gone? How come I can't find a doctor who will take responsibility for my daughter? I believe there are significant answers buried here regarding the larger and current CFS picture with which we are now dealing. I think these answers are in the details of those past years, but these details are not going to be revealed.

In a comment about the previous post - I appreciate the responses that I get and read them carefully. Generally I do not respond to comments, for my own reasons. However upon further reflections, with the comments of others in mind, I have found a partial answer to my own question of "Why", or "Why now"? It very well might be that both these authors rolled out what I see as "off topic" articles to blunt the effect of the PACE trial in the public's mind. Thanks. In this regard, I can see that these authors do have "my interest" in mind.

3 comments:

  1. A famous hiker/backpacker/rock climber that was hit was Wanda Kurdziel....not sure if this is who you are talking about.

    Great Article. I think there are many, many, many more CFS and Lyme Doctors out there than are talked about amongst the population on Facebook or at CFS/ME events. They tend to keep quiet to keep their patient loads manageable.

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  2. FWIW, until the mid 00's [what DO you call that decade ...] there was a group of clinicians/researchers from the AACFS (now IACFS/ME) who used to do Grand Rounds. Tony Komaroff and Charles Lapp were two who I recall doing this. Then I remember a CFSAC meeting where CDC announced they were doing all physician education, thank you - and James Jones, formerly of Denver and a man with a very bad Peter White- type attitude.

    I think I learned about this at the beginning of my relapse off-meds, because I have unfortunately a fuzzy memory about just what happened.

    I know both Ken Friedman of the IACFS/ME and Fred Frieberg of the Vermont CFIDS Assoc and the NJ CFIDS Assoc are trying to do something about physician education - those state groups, plus PANDORA, have funded small scholarships for med students to learn about the disease.

    Key to our invisibility in med textbooks is that no specialty wants us. But that is going to be changing. I suspect the articles by Amy Marcus of the WSJ, and Dave Tuller of the NY Times are going to have a big impact on the profession.

    Mary

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  3. Oops. That should say that James Jones was suddenly put in charge of physician education - certainly not my choice, because he really believes the psychobabble.

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