Friday, March 21, 2014

Dr. Jose Montoya and the Stanford ME/CFS Symposium





It is March 19, 2014 and I have come to Palo Alto for a one-day conference at Stanford University. The weather here is ideal - sunny and warm. I take the long, familiar walk up the allee to the conference - past the Caltrain station, past the museum. This is familiar territory to me, having been here many times in the past - for much different purposes. The air is full of anticipation. It is exciting to come to a major university for an ME/CFS conference.

This conference is the product of one remarkable person: Dr. Jose Montoya.

Dr. Montoya has single-handedly forged this ME/CFS research collaboration at Stanford.  There is nothing of its breadth and scope anywhere else in the world.

Seven years ago or more, Dr. Montoya, an infectious disease doctor, stumbled upon ME/CFS. At that time, his burgeoning interest in this illness did not seem to be particularly welcome to his colleagues at Stanford. An outsider might have given Dr. Montoya no chance of making headway in this environment.  Why would an infectious disease doctor want to waste their time on CFS?  In spite of this resistance, Dr. Montoya forged ahead - and he has created a very strong collaborative research team, including the likes of Dr. Ron Davis. It is a remarkable story.

The series of conference lectures was impressive. The morning’s session included Dr. Jarred Younger’s “Daily Fluctuations of Cytokines in ME/CFS patients,” and the afternoon was highlighted by a presentation by Marcie and Mark Zinn entitled “Quantitative EEG studies Suggest Subcortical Pathology in ME/CFS." (Others, here, and  here, will present a more detailed explanation of these lectures and the scientific strengths of this conference.)

The final two lectures were what I had come to see: Jose Montoya and Ian Lipkin.

Dr. Montoya’s lecture “Circulating Cytokines in ME/CFS Patients reveal a novel Inflammatory and Autoimmune Profile” articulated the results of his long-standing research into cytokines in ME/CFS. For a number of years, Dr. Montoya has been looking to create a cytokine signature and he looks like he might have done this. Over the years I have asked Dr. Montoya how his work towards a cytokine signature was progressing. Each time he said that it was going well and that he was taking his time to make sure that “he got it right”. Now the time of “getting it right” has arrived. Dr. Montoya invites criticism of his work in order to strengthen it.

Dr. Ian Lipkin gave his generic lecture, aimed at college freshman science majors. I found it fascinating, but, in reality, he was actually addressing a room full of hard-core scientists.  One wonders. At the end he tacked on additional work coming out of the Chronic Fatigue Initiative at Columbia.  His results continue to be unimpressive - and we wait for publication of some of his work.

A young woman asked Dr. Lipkin about Enteroviruses and ME/CFS. He gave a vague, evasive answer. Later I asked Dr. Lipkin specifically about Dr. John Chia’s work. Dr. Lipkin professed to not know of Dr. Chia, or of his 2007 paper, or actually of any of Dr. Chia’s work. I found this difficult to believe.  Dr. Lipkin did say that he believed that the stool sample work, for which he is hawking support, would reveal Enteroviral involvement. According to others, others that actually know something about Enteroviruses, this is not possible.

The sold-out conference took place in a large room filled with round tables with chairs and three large screens for slides. It was an ideal situation in which to see and hear the presenters, and the format was constructed in such a way as to encourage interaction. It was a great conference, tightly focused, no bullshit.

Obviously, Dr. Montoya’s efforts have paid off and he now has a momentum to study and treat ME/CFS at Stanford. How lucky can we be? He and his collaborators are producing significant results and garnering attention from the larger science world. This is what is necessary in this ME/CFS illness discovery - serious consolidation and collaboration. The great success of this conference only guarantees that Dr. Montoya and his colleagues will be back with more information, more research, more results, and more hope in the very near future.  Dr. Montoya has done what everyone wants to do in life - but very few can actually pull off. I take my hat off to this fellow.

If one wants to learn more about Dr. Montoya, check out this video:


12 comments:

  1. Hello Christopher,

    I was not satisfied with Dr Lipkin's answer. I asked him after the conference if he could explain his answer in better detail and he simply went back to the old "enteroviral infections will cause antibodies so we need not look in the tissues" thing. And I am appalled to learn/have my suspicions confirmed (?) here that he does not know Dr Chia.

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  2. Thanks for the blog, Chris!

    Some time ago, it was reported that Dr. Chia discovered enterovirus in the brain of a patient who had died. It was also reported that Dr. Chia and Dr. Lipkin would meet to discuss this issue. I hope this meeting will occur.

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    1. I would be *absolutely delighted* if that happens because, as Christopher reported in this post, Dr Lipkin admitted that he did not even know of Dr Chia or of his work. But since Chris only found this out from Dr Lipkin 3 days ago, where, Anonymous, did you read that Drs Chia and Lipkin would meet and discuss enteroviruses? Lipkin would have to know who Chia was first before he'd agree to meet him! Thanks for any light shed on this!

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  3. The information regarding Drs. Chia and Lipkin was reported on a social media platform in late 2013.

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    1. I was told that this information is incorrect. Can anyone verify this?

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  4. Lipkin certainly won't be aware of the decades of research into Enteroviruses and ME done by Dr Richardson and his Newcastle Research Group then either. It's worrying how little knowledge of the existing research literature some of the researchers seem to have.

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  5. This is beyond upsetting, and is close to incompetence. Lipkin, microbe hunter, and Dr Chia, one of a few Infectious Dis. docs, along with Lerner and Santoya should not only know about the existing work, but form a current TaskFforce to pool funds and take each agent suspected to the distance to establish causation. People are dying of this disease, crap I can hardly finish typing this, and these guys need to be real scientists, not ego maniacs. Now, I know Chia isn't into ego, but if he believes in his own work, then he needs to pick up the phone to Lipkin, etc, and offer his ideas. BTW, anyone have a link to what Chia just brought up at the 2014 conference a few weeks ago? Did he meet with Lipkin and others there to discuss his work? I have a 2+ EV stomach biopsy and I'm making an appt. with Chia.

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    1. Geoff,

      Thanks for your input. Perhaps one of the things that I neglect to emphasize enough is the important private conversations that go on at this conference and also at !ACFS/ME. Dr. Chia was heavily involved in numerous conversations, as were many others.

      Chris

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    2. Sorry, my brain freeze. Meant Montoya, not Santoya above. Thanks Chris, but do you also know the new tissue findings Chia discussed recently? If so, have a link? Thanks again

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  6. The only thing that will impress me now is if they find a cure. I have lived with this condition for too long.

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  7. Always nice to hear a ray of hope! BTW The above video was uploaded on Mar 11, 2011 to Youtube by Stanford, so it's not his up-to-date findings. Anybody know when that actual lecture took place?

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