Monday, October 19, 2009

NJCFSA conference October 18,2009

Dr. Derek Enlander received an Achievement Award on October 18, 2009 from the NJ CFS/ME Association. Prior to receiving the award, Dr. Enlander gave a lecture on recent research and treatment possibilities for CFS/ME. The information presented in the lecture can be culled from the internet or from DVDs of his lectures. The presentation was similar to others that I have seen. In other words there was not much that was new. Enlander outlined his protocol - a Hepapressin combo-injection and the use if Immunoprop, Catapult and other things. His current treatment of CFS/ME results in “improvement” in 55-60% of his patients. Dr. Enlander also focused on the Methylation cycle and cited the work of Rick van Konynenburg. He was optimistic about the future for CFS patients, emphasizing that there is hope.

This Patient Advocate took note of a few items. Among them were –

- Dr. Enlander has used Valcyte in 120 patients and none of them had suffered adverse effects. He tests them carefully for the first four weeks. He says his success with Valcyte is less than the 75% success rate of Montoya. I think he said it was more like 40%.

- Dr. Enlander spoke of a patient who was legally blind from HHV6. After treatment with Valcyte her vision is 20/20.

- Dr. Enlander spoke of the recent paper about XMRV and his comments mirrored ideas that he has expressed on the internet. He is excited about the study and states that it needs to be replicated by an independent lab. Dr. Enlander said that he was sending patient samples to Jonathan Kerr in the UK, who is in the process of testing the XMRV hypothesis.

- Dr. Enlander has a grant to do XNRV testing.

- Dr. Enlander is testing de Meirleir H2S hypothesis.

- These observations are an indication that CFS/ME doctors and researchers are communicating and joining forces.

- This Patient Advocate asked Dr. Enlander about Ampligen and his opinion was mixed. He himself used this drug on his patients a number of years ago but stopped with the problems that were circulating around Ampligen, most of which had nothing to do with the drug efficacy. Dr. Enlander is neutral towards Ampligen at this point, although he did say it has potential toxicity issues. Some patients who took Ampligen got much worse on the drug and suffered long-term effects.

This of course contradicts the more rosy picture presented by Hemispherx. There was a Hemispherx representative at this conference. She repeated information about Ampligen included in company statements. She said nothing that I had not heard before. Hermispherx expects an FDA decision by the end of the year and the recent delays are perhaps manufacturing issues or toxicity issues, both of which seem to be minor problems, at least from her point of view. Where this all leads for Ampligen, no one knows. The PA asked her is anyone had died in the trials, and she said no. She said that Ampligen has a very good safety record and it did not have toxicity problems in the many doses that have been given over many years. She said that Lapp, Peterson and Bateman use the drug in the U.S. She said that de Meirleir does not use it as much as he did. So, to this PA, the picture on Ampligen remains cloudy.

Dr. Susan Levine presented results of two small research trials that she has done. While a practicing physician in NYC, Dr. Levine also likes to do research. Dr. Levine has presented her viral research at this conference in other years. She has also received the NJ CFS/ME Achievement Award. Dr. Levine is an impressive and devoted physician. Many of her patients were in attendance. Dr Levine makes an effort to include young medical people and potential doctors in her practice and research. She is thinking down the road - to the future of CFS practitioners. One of her younger colleagues - Alexandra Volper - won a scholarship award at this conference. She was tremendously impressive in her acceptance of this award. She follows in a line of very dynamic and committed young future physicians to win this modest award of $3,000. It was great to see her.

Dr. Levine was cautious about this recent XMRV study. She pointed out that it was “scary” to think that a retrovirus was involved. It must also be remembered that Dr. Levine was part of the failed attempt to replicate the de Freitas trial.

The PA got the feeling that no one really knows where this XMRV research is going – but that everyone was very interested. The one person who seems to be driving the interest and who does not seem to be wavering is Judy Mikovits. This is going to be interesting.

3 comments:

  1. Thanks so much as always for your insights and your passion! (Honestly I didn't even know you had a blog - just linked you up to mine.). These sure are heady days. Thanks for all the info.

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  2. A question:
    was there any discussion or any intermediate data about the correlation between Prof. de Meirleir's H2S test and XMRV presence?

    (my wife and kid are strong positive on the H2S test)

    Much obliged

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  3. chrislopez
    5/13/10 New Jersey Meeting

    maybe we were at a different conference or maybe you are in love with Susan, here is my report


    The Main speakers were Dr Derek Enlander and Dr Susan Levine. Dr Enlander spoke for an hour gave a broad overview of recent research including the XMRV viral work. He said that it was too early to judge the outcome and the initial results have to be reproduced and duplicated by other researchers before we can determine the meaning of the original results. He however was excited for other reasons, he stated that the publicity resulted in the Press reporting that CFS/ME was indeed a disease rather than an imagined problem. He underlined the deFrietas retrovirus research 20 years ago resulted in a setback in CFS because it was not reproducable.
    He then spoke about the methylation cycle and the results of his treatment protocol (based on RichVank). 65% of patients improve on this treatment. The protocol is based on the Kutapressin-like product, Hepapressin Complex includes aminocid complex,folic acid,magnesium sulphate,calphosan,methylcobalamine and some other things; Immunoprop, a glutathione/ l-cystine product (www.immunoprop.com); Immunoplus contains follinic acid and other things ; An electrolyte mixture based on Blassi (Spain) research, and sublingual Methyl cobalamine instead of injections.
    Dr Levine gave a listless uninformative talk for ten minutes, she seemed uninterested and was uninteresting. I think she is burnt out. A medical student talked on some research.
    Dr Enlander was presented with a plaque by the Society for his work, we noted Susan Levine left the room for the presentation, it was not polite. Maybe she had to go, but her timing was poor, nor did she apologize.
    In all, a good conference because of Enlander's talk, I hope he speaks again.

    Chris

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