A non-scientific report on the Reno conference

Discussion in 'Fibromyalgia Main Forum' started by consuegra, Mar 16, 2009.

  1. consuegra

    consuegra New Member

    I attended the CFS/ME conference in Reno Nevada from March 12-15. I am a patient advocate for my 35-year old daughter who is housebound with CFS. The conference took place at the Peppermill Hotel and Casino. Upon arrival, this location seemed a most improbable place to have a CFS/ME conference. This choice is a highly stimulating environment, with flashing lights, chemical smells, perfume, noise, lousy and expensive food, and a smoky environment.

    The location was chosen because Reno is the home of the new Whittemore Peterson Neuro-Immune Institute, which is currently under construction at the nearby Reno branch of the University of Nevada. This research and treatment center is scheduled for completion in several years.

    As with all academic conferences, there are contending forces at work. The conference organizers do their best to be inclusive of this vast umbrella of CFS/ME. Consequently the presentations run from the most abstract to the very mundane. It is a four-day extravaganza. Because of its length and breadth, the total effect is somewhat confusing and unsatisfactory in terms of getting a sense of cohesion. However one can pick their way through the talks and presentations and come away with some sense of progress and direction.

    I am a patient advocate. I am neither a doctor nor a scientist. I come to this conference seeking practical information regarding treatment modalities. I find many of the research talks fascinating, but I am more interested in the here and now. My knowledge of biochemistry is limited, despite having listened to hundreds of talks.

    I attended the conference in Ft. Lauderdale in 2007. The 2007 conference had a much greater sense of superficial excitement than the Reno conference. This was due to the impending Valcyte trials. Dr. Montoya, a virtual unknown at the time, was welcomed as a hero. Dr. Montoya was not at the Reno conference, and no further presentation of the Valcyte trial results have been made public.

    The conference started with a one-day Patient’s conference. The talks were general in nature. The auditorium was full with close to 300 participants. Dan Peterson and Anthony Komaroff gave excellent introductory talks, followed by fine talks by Dr. Leonard Jason, who is always super focused, and by Nancy Klimas on various current treatments. There were questions for all of the speakers at the end. Very little was new here and most of the information presented can be found on the internet. The big news of course is the Whittemore-Peterson Neuro-Immune Institute.

    The format from the last conference was changed in that there were not "open mike" question periods. Instead questions were put in writing and selected at the dais. While this might have proven itself to be more “efficient”, it lost the “dynamic” of the "questions portion" of the program. This written question procedures went on for the entire conference (with one notable exception). Hence the presence of Dr. Park, Dr. Shoemaker, Dr David Johnson, Rich van Konynenberg and many others was missing - in that the authors of the written questions were not identified, nor could the spectator judge the questioner through appearance and voice. (I found the open question sections incredibly valuable in the Ft. Lauderdale conference and also at various other conferences to which I have been.) I was surprised at this new format, as Klimas usually encourages the give and take. The one exception to the written questions was on the third day when there was an open discussion of several case studies. It was during this time that van Konynenburg, Park and others were able to voice their ideas to the entire group. I would very much have liked to see more of this.

    A fine lunch and dinner were provided for the patients by Sierra Internal Medicine, Peterson’s organization. At dinner, Dr. Peterson was introduced - and then enthusiastically welcomed for his tremendous efforts in this field. Speaking to an appreciative audience, many of whom must have been his patients, Dr. Peterson was visibility moved - shaken really - as he thanked the patients for the inspiration that they provided him. It was a very moving and heartfelt moment, and put aside any question in my mind of the value of coming to this conference.

    The next three days were the Research part of the conference. Many of the familiar CFS doctors and researchers were present: Kenny de Meirleir, Natelson, Klimas, Dan Peterson, van Konynenburg, Shoemaker, Kerr, Raymond Perrin, Trevor Marshall, Dr. John Chia, Cheney, Mikovits, and Jason. Surprisingly, many physicians and researchers were absent: Holtorf, Byron Hyde, Jacob Teitelbaum, Dale Guyer, Susan Levine, Derek Enlander, Ablashi, Montoya, Vrchota, Lerner, and Viniski. There were a few doctors from UK and Europe, and a number from Japan.

    For me the highlights of the first research day (Friday) were the presentation of a small but positive trial of Isoprinosine (showing patient improvement in various parameters), an exquisite talk by Alan R. Light on receptor expression on Leukocytes increases after moderate exercise (with potential biomarker possibilities), and a small trial on Xyrem (taken for alpha wave intrusion). 95% of patients showed improvements, with no difference in immune markers. Next was the soft-spoken Jonathan Kerr, who holds a key for long-term solutions, and whose presentations are riveting.

    The second research conference day, Saturday, was the longest and included the most presentations. Saturday started with the open discussion on “difficult patients’. This was quite interesting, but it could have been much longer. Mikovits, the director of the Whittemore-Peterson gave a slam-bang talk, one similar to what she delivered in the UK last May. However, this time she had less time and she really had to whirl through it. This gal is generally accepted as being a serious researcher and in a position to get some results. She is obviously bringing money and people over from her former research field in cancer. Gordon Broderick, allied with Klimas, gave a super lecture on his new paradigm or motif for gathering and collating information, which presents a much broader and dynamic model. Vincent Lombardi, also with the Whittemore-Peterson Institute, concluded that cytokine and chemokine signatures in subgroups of ME/CFS could be used diagnostically, as serum biomarkers to striate patients for appropriate anti-inflammatory, antimicrobial and antiviral therapeutics. Klimas followed this with her talk on cytokine defects in CFS/ME. I was pleased to see Norman Booth give his study results on mitochondria dysfunction and the mitochondrial tests that are being done at Acumen in the UK. Acumen is run by John McClaren Howard. Also Shoemaker gave a great talk, but he seems to get lost in the shuffle. I actually was surprised that he was invited to give a talk.

    The third day featured research in genomics. This session presented, through Kerr (and two of his very young lab scientists, who both made excellent presentations) and Mitovics, an impressive coherence. At the same time there seemed to be a sense that not everyone was on the same page, and that there were many loose ends. There was an agreement that much work needs to be done before biomarkers might be realized or treatment modalities attempted.

    At the end the Japanese scientists presented their “model for an integrative approach” including ideas about anti-fatigue foods.

    Poster papers are presented in an adjacent room to the lecture hall. Poster papers are visual presentations on bulletin boards and available for viewing throughout the three day Research conference. They are pre-selected, through an application process. I estimate that there were about 30 poster paper presentations. These included work of Dr. John Chia on Oxymatrin, and Rich van Konynenburg’s positive results on his Methylation pathway blockage concept. Additionally Ritchie Shoemaker, Trevor Howard, Raymond Perrin, Amy Proal and Ashok Gupta presented their ideas. The presenters of the posters were available during the breaks for conversation - and there was a great deal of interaction that took place in this room.

    A DVD of the complete conference is available and will be released in two weeks.


  2. mezombie

    mezombie Member

    This is the best that's been posted on this board so far.

    Thank you for attending and writing this up for us, Chris.

    One question: Dr. Byron Hyde was invited to be a poster presenter. Was he there? If so, was there any interest in his data?

  3. Forebearance

    Forebearance Member

    Thank you SO much, Chris!

    I really wish I could have been there. I am so glad that Dr. Shoemaker attended. I know he was talking about pediatric CFS, but I would assume he said something about neurotoxins in his lecture. Did he?

  4. stschn

    stschn New Member

    Thank you so very much for doing this for the rest of us.

    I wish we could all just get a $300 bailout to purchase the DVD of the conference.
  5. SolSerenade

    SolSerenade New Member

    i want to thank the original poster for taking the time to describe the conference to us.
  6. consuegra

    consuegra New Member

    Thanks for your comments. I wish that Dr. Goldstein was still practicing medicine.

    The big problem with doctors is that they are people, and they have all the strengths and foibles of people. I can imagine the scenario that you present about Peterson, but I prefer at the moment to record in my mind what I saw at Reno. There was genuine affection expressed for this man by quite a large crowd of sufferers. That does not happen for no reason.

    I thought about you gunning me down when I included Rich van Konynenburg's name. Technically I am sorry to have to report that he actually is a researcher. Was this looming shadow going to make me leave his name off the list? - no, it wasn't. Mr. van Konynenburg seems to be making headway in the complex world of CFS with many patients at this conference and elsewhere attributing modest gains to his concepts, ideas, theories, speculations (whatever you want to call them). A few doctors, and now more, are listening to him, even though others at this conference and elsewhere are very interested in shutting him up.

    About John McClaren Howard you are wrong. He is much more like Goldstein than you might think. Unfortunately there is not much information available about him except for people like me, who have sought him out.

    Anyone with this disease who does not pay attention what they put in their mouth is missing a big item.


  7. ladybugmandy

    ladybugmandy Member

    i still cannot believe so much in medicine is politics. i should be used to it by now, but it still always floors me.

    thanks for a great synopsis!
  8. mezombie

    mezombie Member

  9. QuayMan

    QuayMan Member

    Thank you very much for taking the time to write this. Even if I lived in Reno, I wouldn't have the energy to attend. And of course it costs money. So it's great to have reports like this. Thanks again for the time and effort you took to write it.
  10. bakeman

    bakeman New Member

    "I believe that the doctors wanting to "shut him up" are aware of his ties to Amy Yasko, and her fleecing of the autistic community. (Anyone who's not aware of that hasn't done their homework). They are probably aware of her court battles over money, too."

    i recall goldstein had some legal issues as well. how quickly we forget. (Anyone who's not aware of that hasn't done their homework).

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