Saturday, May 19, 2012

InvestinME Conference 2012


The 7th annual InvestinME Conference will take place on June 1st in London. I have been to four or five of these conferences, and I am hoping to be able to go this year.

This conference for ME/CFS patients, clinicians and researchers, organized by Pia and Richard Simpson and their colleagues, is the very best of conferences on ME/CFS. Others should take this conference as an example for organizing clinician and research presentations. Actually, last November, Dr. Derek Enlander did organize a conference at Mount Sinai ME/CFS Center that was roughly based on the InvestinME model. We can look forward to upcoming conferences at the Mount Sinai ME/CFS Center. 

The one-day format of the InvestinME conference is hard-hitting and intense. It is a long day, and it does not let up. There is a round table and dinner presentation the afternoon and evening before the conference that allows the presenting clinicians and researchers to have valuable and serious interaction. I myself have observed numerous intense conversations going on in the hotel and at the conference, often during breaks and at lunch. (They serve a nice and healthy lunch as part of the conference.) It is a great idea to get these clinician/researchers together, and to have an informal go at each other. This is where things happen. InvestinME has done us a great service in facilitating such conversations.

This year's conference is going to be another very exciting event. Each year, there is a finely designed balance between past avenues of treatment and research, and new guest speakers that reveal new or further research directions - often aimed at filling out the larger picture. Emerging research and treatment is always blended in an intelligent way that extends the focus of their past conferences. In other words the organizers of this conference have an idea of what they are doing, and consistently follow a thread of the most serious and important research. The sponsors are not interested in solutions one hundred years into the future. They want things to happen now. Given the number of options, the organizers always strike a good balance. Always underlying this conference is an emphasis on new and expanding interactions.

This year we will see the return of Professor Olav Mella and Dr. Oystein Fluge, who made a very important presentation on Rituximab at this conference last year. Certainly they will elaborate on continuing studies with Rituximab. Perhaps they will speak about the announcement from just a few days ago that they will be conducting an open trial of Etanercept (Enbrel) on seriously ill ME/CFS patients. Some readers might remember that Dr. Jonathan Kerr proposed Entanercept as a good drug study candidate for ME/CFS. In 2007 Dr. Kerr designed a small trial using this drug on ME/CFS patients. Dr. Kerr's research application for funding for this trial was denied. Imagine what might have happened if this small trial had been funded? Unfortunately, this was the beginning of the end for Dr. Kerr and he was driven off the stage of ME/CFS research. He was such a fine researcher, modest and exacting. It was one thing that he was looking into genetic associations with ME/CFS. It was quite another that he was proposing treatments. Dr. Kerr went "one bridge too far" and he was disappeared.These attacks on ME/CFS or immunological researchers certainly indicate something.

Most of us know the story of how Dr. Fluge and Dr. Mella stumbled on the possibility of using Rituximab on ME/CFS patients. It was serendipity. It is worth noting at this time an announcement some months back of a study funded by author Laura Hillenbrand. Ms. Hillenbrand is underwriting an effort to revisit older pharmaceutical drugs for use on ME/CFS. This is a welcome effort, as sometimes searches like this actually really pay off. A good place to start would be the list of drugs that Dr. Kerr suggested might be useful. These suggestions were based on his genetic research. Enbrel could be one of these helpful drugs - and it does not have the toxicity of Rituximab.

Two other Americans are returning from last year, Dr. Andreas Kogelnik and Dr. James Baraniuk. Dr, Kogelnik has a great deal of information to share with Dr. Fluge and Dr. Mella, as they are all working with Rituximab. I would not be surprised if Dr. Kogelnik also begins or has begun studying the use of Enbrel in ME/CFS. Dr. Baraniuk, from Georgetown University, does important work with the brain. Mike Turris' fine summary from last year's conference said this about Dr. Baraniuk: "He is conducting a CFS and GWI research study, doing lumbar punctures where they measure the spinal fluid pressure during the procedure and search for specific proteins that may help understand these two similar conditions. As a treatment, he is trying Carnosine as an antioxidant that could relieve symptoms."

Dr. Daniel Peterson makes another presentation this year - as he has done several times in the past. Often he will attend this conference even if he is not giving a lecture. He has things to say to others, and he is always looking for new connections. As evidence of these connections, we can look to his colleagues from Bond University in Australia, where Dr. Peterson has strong research links. One of them, Dr. Sonya Marshall-Gradisnik, will be giving a talk entitled, "Current Knowledge of Immunological Markers". This will no doubt include details of a recent NK cell research project. Dr. Peterson has long believed low NK cells are at the heart of this illness and are a potential biomarker.

Further information on the remaining researchers can be found here.

InvestinME releases a DVD of the conference and the price is quite modest. It arrives in a timely fashion and can be shipped worldwide.

What suggestions might I add myself to the organizers of this conference? I would say these two things: I would like to see Dr. Samuel Shor invited to speak. I would like to see more ongoing attention given to GcMAF.

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