Thursday, November 17, 2011

Mt. Sinai conference - Rich van Konynenburg

The upcoming conference at Mt. Sinai (on Sunday November 20, 2011) is a step in the right direction. This conference, the first of the new Mt. Sinai ME/CFS treatment and research center, embraces the serious exchange of treatment and research ideas in ME/CFS. There are some new names here, and we look forward to hearing from them. There are also some more familiar figures. The interaction should be illuminating.

The conference will start at 11 and will feature five half-hour presentations by Dr. Derek Enlander, Dr. Kenny De Meirleir, Dr. Eric Schadt, Rich van Konenynburg and Dr. Merriam Merad. After a lunch break there will be a panel discussion with the participants. (Judy Mikovits was scheduled to join the panel discussion, but will be "unable to make it" as she was arrested on Friday, November 18th in her hometown in CA on a fugitive from justice charge.)

I was pleased to see the name of Rich van Konynenburg among the speakers. Rich is an "independent operator" in the ME/CFS world - and one of the best. Over the years, he has developed a very convincing biochemical explanation for the part that methylation blockage and glutathione depletion play in ME/CFS. Rich has existed on the periphery for too long. He needs to be brought into the discussion. Rich is a welcome addition to this list of speakers, and perhaps this exposure will get some traction for his ideas.

I have followed closely the work of Rich for a good number of years now. Rich has presented poster papers at each of the major ME/CFS conferences (and at various other conferences). Once in a blue moon, he is actually invited to speak, and to present his thesis on the connection of the methylation blockage and glutathione depletion in ME/CFS. His ideas are firmly based in biochemistry and very well might play an important part in understanding and penetrating this illness. Certainly Dr. Enlander believes in the reality of methylation blockage, and his formula for treatment involves elements either borrowed from Rich's theory or coincident with it. Other clinicians also are paying more attention.

Rich's presence at the recent IACFS/ME conference was very noticeable, as he seems willing and able to talk individually with people without prejudice. He is on his feet all day of the poster conferences, presenting in a nutshell his complex set of ideas. Why he has never been given a time slot to directly address a conference session I will never know. His ideas need further exposure.

Here is a article by Rich van Konynenburg on Phoenix Rising. A revision of the original simplified protocol and a discussion can be found here. Discussions of the methylation protocol can also be found on various ME/CFS forums.

The first time I observed Rich van Konynenburg in action was at the 2007 IACFS/ME in Ft. Lauderdale. At that point, attendees to the conference could come to an open microphone and ask questions directly to the panels. In general the panel members "froze up" with the clarity and persistence of Rich's (and others) questioning. It was obvious that the "ability" of the panel members to engage unfamiliar territory was limited. Rather than trying to come to terms with what Rich was suggesting, they changed the format at the next conference to written questions - and in this way the organizers could control (and eliminate) the questions that were more penetrating or "difficult". This "technique" is used more and more today by important people who are averse to things "entering in". My response has always been, "Let's hear more from this fellow".

Recently, Rich gave a three-hour long lecture at a conference in Sweden. It is available online in three sections and they can be accessed in the following videos. I recommend viewing it in parts, as it is well worth watching.

Treatment for this complex, yet measurable, dysfunction is relatively simple, and can be found in various places on the internet. Rich himself engages on various forums, discussing with patients and advocates the specifics of his ideas, disassociating himself from giving medical advice.

It becomes obvious that his interest in ME/CFS is a labor of love. Certainly he cannot be accused of making money off of his idea, as he is always "on his own dime". Instead we find that his motivation to "get involved" is similar to many others in this field. He has a friend who has the illness.

Rich also is free of the usual entanglements - as he is neither an academic researcher nor an ME/CFS clinician. Instead his background is in electrical engineering. In his retirement, he has turned his fine mind onto the problem of solving or getting to the source of ME/CFS. Actually, like other important contributors to the mechanisms of ME/CFS (Dr. John Chia comes to mind here with his revisiting of older UK research of enteroviral involvement in ME/CFS), these ideas on glutathione depletion are not new, but borrowed from practitioners in autism. Rich had the insight to see the connection. We will all benefit from his insights.