Tuesday, April 12, 2011

NIH State of Knowledge April 7-8, 2011

In the pursuit of making my daughter better, I spent two days at the NIH State of Knowledge conference in Bethesda. These lectures were video cast live, and some are available on youtube. Eventually the NIH will pod cast this conference.

This conference was not as bad as I thought it was going to be. While many major figures were not present at this conference, there were others whom I was excited to see and hear. (I think the reason why so many key figures were missing is that they have given up on the NIH.) In general there was a sense that information was being exchanged, especially during the breaks. There was also great evidence of the continuing “frozen” response of the NIH towards this disease – years and years and years now.

The first day had excellent presentations by Dr. John Chia and Dr. Leonard Jason. Presentations of these researchers can be seen on youtube, or through videos from InvestinME. To the seasoned viewer, neither of these men said anything new. However what they presented was very important for NIH “investigators” to hear. Both of these independent researchers are guided in different ways to seek clarification with this illness. Dr. Jason’s background in Psychology serves him well in his successful and continuing efforts to define and clarify the ME/CFS patient population. I first heard Dr. Jason five or more years ago and it was immediately apparent to me that this man is very smart, and has the doggedness to follow his arguments and definitions to the very end, backed up by data. His role in sifting things to their very essence has been immensely important, although I am not sure how many people realize this. (It is interesting to consider the idea of Dr. Jason “and his team” at DePaul University. Dr. Jason’s team is Dr. Jason and his brain, Dr. Jason and his heart, with a few graduate students thrown in. This guy is really a key asset.)

The same positives expressed about Dr. Jason can be extended to Dr. John Chia. Dr. Chia, a clinician and researcher, has doggedly followed his pursuit of enteroviral involvement in ME/CFS. He has single-handedly reignited a decades old, but forgotten, UK association of enteroviral involvement in ME/CFS. Dr. Chia has brought this association back in a very big way. Dr. Chia is one of a very few clinicians who has a firm grip on a subset (or more) of this illness. As with Dr. Jason, it is my feeling that Dr. Chia’s work is underappreciated. Dr. Chia needs to collaborate more with other independent researchers and clinicians. His contributions are invaluable. Dr. Chia and his son Andrew continue to look for treatments for enteroviruses, some of which are on the horizon.

These very important figures were presented amongst lesser figures - giving the general sense of the a lack of direction or of trying to cover too many bases. I very much prefer the format at the InvestinME conferences, a focused day of hard-hitting researcher/clinicians. Richard and Pia Simpson take the time to chose what they feel are the most “coherent” speakers for moving the research and treatment field forward. The big difference is that the Simpsons are not “confused” about this illness. They know what it is, its shape and feel, and are intent on “getting at it”. The NIH is into “wandering” indecisiveness.

The first day of the NIH conference was highlighted by an intense exchange between Dr. Judy Mikovits and Dr. John Coffin. Standing in between was Harvey Alter, who did a “professional” job of straddling the fence. He indicated, at this point and again the next day, that this dispute will be resolved by two ongoing tightly drawn studies. This could take up to two years – or longer.

Dr. Coffin was impressive in his lengthy, twice repeated apology for popping the bubble of XMRV. There are those who will take Dr. Coffin at face value, and accept this as a genuine apology of a “pretty good” virologist. I am certainly willing to do this up to a point, but where I have trouble is when he repeats the exact same apology for a second time. Oscar Wilde or Mark Twain would have appreciated the humor here, and seen right through it. I also think he went a “bridge too far” with his recommendation that we leave XMRV behind. It had a very dramatic ring to it, but Dr. Coffin must know that this is slightly premature and one wonders why he did this? It seemed a bit forced, and immediately after declaring it, he started his habitual back up and covering his bets. One could hear the crunching of gears as he put the car in reverse while it was still moving forward. Dr. Coffin was the only participant, or the only one of a few, who had a “hired gun” aura to him. He came in, delivered his information, did his apology thing, and split. It was like he had a job to do, and this job included closing things down without opening anything up.

I was slightly discouraged at the end of the long first day and entertained pitching it in and just going to the museum. However I stuck it out and found the second day somewhat better. I was particularly interested in two presentations - Dr. Michael Dean, and Dr. Theoharis C. Theoharides. Both of these researchers presented interesting angles of research, each with the capability of being rolled into existing research and treatment avenues. Their work had a “translational” aspect to it.

Nancy Klimas and Mary Ann Fletcher, two researchers who work in tandem, gave important presentations. They both seemed to express exasperation at the largely confusing picture of this illness being presented - as they do not see it as so confusing. It is always surprising to me that Klimas and Fletcher do not share cytokine research information with Mikovits or Montoya. Everyone has to invent their own wheel, is that how it works? Everyone seems to go off on their own tangent, even while they are trying to solve the same problem.

Gordon Broderick, a great discovery of Dr. Klimas, added his important information. This fellow could easily work for a consortium of ME/CFS researchers. Baraniuk gave a little speech saying that the NIH needs to uproot its “culture”. The implication was that the NIH was not approaching this problem in the right way, and that they needed to change their ways. Dr. Ken Friedman outlined the abuse that he has suffered at the hands of his university. I had heard Dr. Friedman speak about this and other abuses before and always found his accounts very shocking. He has a lot of guts to get up in this environment and reel off the injustices and prejudices surrounding his association with this ME/CFS. Having myself suffered through 35 years in an academic college setting, I know of the hypocrisy and venality of which Dr. Friedman speaks. Dr. Martin Lerner, the father of viral treatment of ME/CFS, was in attendance although he was not amongst the speakers.

Underlying many of the presentations was the dynamic struggle between things that might have immediate applicability to this illness versus those that will perhaps shed light on this illness one hundred years or more from now. Since I feel a great sense of urgency about this illness, it does not come as a surprise on which side my interests lie.

I am also convinced that an important part of the struggle is over long-standing attempts to establish ME/CFS as an infectious disease. This is the true elephant in the room.

It has become apparent that the WPI is developing a framework to try a number of protocols or combo/protocols on patients in limited trials. Because of a lack of funding it is possible that they might just bypass trials, and start treating patients and building data. Dr. Judy Mikovits pointed out quite clearly that the WPI was not going to wait another two years to move on to the treatment of these sick patients. The WPI’s position has become very clear in the last few months They feel that there is a very sick patient population of ME/CFS patients that can be clearly identified. They feel that that there are means by which these patients' immune function can be measured and tracked. They feel that there are treatments to try both on the side of pushing back pathogens and on regulating the immune system. Some of these treatments already exist, and some are coming down the line. From the WPI’s perspective everything is in place to begin treating these patients. The WPI are also actively looking for clinicians, researchers, and drug companies to help in this effort.

The gap between the WPI's position and the general level of indifference displayed in the conference room could not be more palpable - and one gets a bizarre feeling seeing these divergent ideas on display, played out in one room in a slice of time.

I sought out Dr. Coffin and Dr. Alter and gave each of them a copy of “Lost Voices”, Natalie Boulton’s book about severe ME/CFS. (This book is published by InvestinME and is available here.) Each received a signed copy (to me) from Natalie Boulton. (I figured they could just erase my name and write in theirs). I am not sure that either of these scientists were overly impressed by my approaching them - nor do I expect them to take more than a cursory view of this fine and frightening book. But I figure that this is a job that I can do. Mary Schweitzer had a similar idea, but on a much larger scale. She brought 40 copies of "Lost Voices" and placed one in each of the participant’s laps. What they will do with this document is anyone’s guess. There is no question that many of these participants do not know much about ME/CFS illness, although they will tell you that they do. All of these folks think they have a perfectly clear idea of everything. Living in an insulated world tends to increase the inability to interact in a convincing fashion with reality. These guys and gals should ride the public bus system in Minneapolis, especially the #21, where all folks are on an even plane - and many carry guns to support their positions.

At some point, for some reason, on the afternoon of the second day, the moderator decided to recognize patient statements. Various patients came to the microphone and spoke of the particulars of their illness. This is a difficult thing to do in a spontaneous fashion, to speak in front of a group of people who have marginalized and abused you. It has a bit of the plaintive character of a boy begging not to be beaten again by his father. Each of the patients’ testimonies were descriptive and deeply personal. Of particular affecting power was the presentation of Bob Miller that can be viewed here. Of a heightened expression was his pounding on their flimsy conference table. This was a very great moment of drama, and many people in the room sensed this.

Some of the participants tried to get beyond the particular disputes and inadequacies of the past. It is obvious that there are a few new friends here, and some of them are very smart people. There seemed to be some emphasis on cooperation in various matters. Dr. Mangan made an effort to bring in people from the outside. I was particularly keen on Dr. Dr. Theoharis C. Theoharides. I wonder if he can be convinced to stay around in the ME/CFS world? Often the smart people take one look at the larger “political situation” of this illness, seeded and fed by the government, and decide to go somewhere else. Often sponsored by the NIH, good researchers, according to the game, are beholden to the NIH and susceptible to pressures of various kinds. These larger political elements were on full display at this conference, including the short appearance of NIH director Collins, who has been presented as the new bureaucratic savior. He played his role well, revealing nothing.

The more that I watch these situations, the more I am convinced that there are two irreconcilable positions relative to “XMRV” - or to the investigation into infectious agents, or into infectious agents relative to immune dysfunction (which incidentally includes the brain).

The first is the party line, adopted by the status quo, and this is the view held by the majority of people. This line of “thinking” suggests that the WPI made a quick and lucky hit on a retroviral association that was sufficiently vague and confusing as to not be able to be knocked down immediately. The WPI's decision to attach themselves (hoodwink) the Rushettis and Bob Silverman in the process allowed the WPI discovery to be published in the hallowed Science magazine. The effect of this Science article allowed XMRV to attain a higher elevation than it deserved. Repeated efforts to replicate this study failed, except for one paper by Lo/Alter that was also actually not able to find XMRV. Instead it did find another retrovirus in the same family, but this did not confirm in any way the Science paper. Since then, various studies, papers and presentations contending that XMRV is a contaminant, have emerged – conclusive, but not entirely proven yet. This is seen as the normal progression of science - and now we are finally at a point where we can be assured that the proper outcome will take place with the Lipkin study. This study will be completed in the next year or two or three. Stay tuned.

The second is the alternative interpretation, adopted by the “crazies”, many ME/CFS patients, and the conspiracy theorists. With this line of thinking, the WPI has made a lucky “strike” in attaching an association of the third known human retrovirus with ME/CFS, catching many in the science community off guard. The WPI had the foresight to join forces with the Ruschettis and Bob Silverman and get their study published in Science magazine. – (without these other labs, this paper would never have seen the light of day). The near-unprecedented publication of this study from three separate labs was in itself a replication study. Various negative studies emerged that quickly blunted the momentum of the October paper, with the pitter-patter of negative presentations continuing over the next year and a half. Another positive study, the Lo/Alter was delayed (in a quite unusual fashion) for reasons unknown. Several months later this paper was released, finding a retrovirus from the same family of retroviruses as ME/CFS, thus confirming the first study. Subsequent negative findings have greatly slowed momentum into XMRV research. The orchestrated slow down has had great consequences for ongoing research into XMRV - no funding has been extended to the WPI, at least one ME/CFS researcher has been squeezed out of his job, another’s application for continuing research funding has been summarily cut off, funding for ongoing research into XMRV has been delayed, and researchers have been “encouraged” to distance themselves from XMRV. Two or more renowned retroviralists have claimed decisively that XMRV is a contaminant. A third virologist has unwittingly been caught in a very tight spot, having no previous experience to guide him in this matter. The NIH has funded a definitive study that will reach a conclusion in the next two years and “settle” the matter. This waiting game, this blocking and holding game, is seen for what it is – an attempt to disrupt serious research into ME/CFS by the status quo, for unknown reasons. This “activity’ continues a 25-year relationship between ME/CFS and the United States government. The conclusion of this scenario is that someone, somewhere does not want this retrovirus to surface in this patient group, and that no infectious disease needs to be associated with this illness.

The first scenario maintains the status quo, and the belief that the world of science has its way, that it is slow, and that the truth always comes out the winner. The second questions this idea at every turn, believes humans are fallible (or deceitful) and that questionable activities are taking place.

Suzanne Vernon, the scientific director of the CAA, made a good summation of the conference. First she stated the obvious - that XMRV has elevated ME/CFS, and that its discovery has created new and unprecedented opportunities. She neglected to name the discoverer of the XMRV association with ME/CFS – a habit of hers and a slight oversight. Later she also spoke at length about cooperation among various groups in a low-funding environment. To me this is an extremely important idea. However, I am not sure that the CAA is the proper group to guide this cooperation. The CAA seems to lack both a focus and a constituency. They are too tied to the forces that have buried this illness and these patients. I would like to see the CAA change their stance to be more genuinely open, to be more inclusive. I do not, however, imagine this will happen.

After this conference, my basic position remained the same. “XMRV” does not need to be left behind. Instead, let’s “leave the NIH behind”. It is time to face the reality that these folks are not going to help with ME/CFS. The NIH is not capable of leading here.

There is only one way to move forward. The smart folks who have knowledge of and experience with this illness have to work together. They have to overcome their differences and try harder to work with each other. (I always liked the idea of the Ratna Ling group.) Cheney, Peterson, Klimas, de Meirleir, Chia, van Konynenberg, Mikovits, Lombardi, Deckoff-Jones, Enlander, Montoya. Jason, Baraniuk, Conant, Singh, Hanson and many, many others have to put their angers and frustrations behind them and work for a common good. These are very smart people with a lot of clinical experience and good ideas. The most obvious focal point, or “clearing house” is the Whittemore Peterson Institute.

For another review of the conference please consult Rich van Konynenburg’s write up here.

Liz Willow also writes about the NIH conference here. Check it out.


  1. Can you share with us what Dr. Chia's, WPI's or Dr. Dean's treatments on the horizon may be. I have already ordered Dr. Theo's NeuroProtek.

    thanks for the write up and attending the meeting.

    warmest regards

  2. An adroit summary (as ever) Chris. Your insightful analysis are a valuable asset to us all, as you have the capacity to illuminate the many dark places surrounding this illness.
    Watching the video of his SoK workshop talk, I was immediately struck by the relevance of Dr. Theo's work and can see the potential for its rapid translation into treatments. He's clearly been around a long time and yet he appeared in "our world" almost from nowhere. Why?
    Why weren't the NIH, the CAA and others already collaborating with him on ME/cfs ? - it's so bloody obvious!
    I will be watching him closely from now on.

  3. In my opinion: This is BY FAR the BEST ACCOUNT of what went on with and at the NIH Meeting. Objective, Truthful, EXCELLENT Reporting and Insight.
    Thank You!

  4. Thanks PA, a really good summary...and glad you made it there! I do feel it is like Dr Mikovits is saying that the house is on fire and no-one is running in with the hoses. Would be great if all these talented and extraordinary people could get together to move research forward as per your suggestion.

    I would also like to add that the lady who was a director of AHRQ (also an ME sufferer, sorry didn't catch her name) said an important point that we all should remember... "behind funding is political will".

    Thanks again,

    Julie Sowerby

  5. "The gap between the WPI's position and the general level of indifference displayed in the conference room could not be more palpable - and one gets a bizarre feeling seeing these divergent ideas on display, played out in one room in a slice of time."

    This was my feeling exactly, especially after I saw the CAA's Suzanne Vernon attempt to reprimand Dr. Judy Mikovits: "Judy,I think you need to be careful..." See: http://www.youtube.com/watch?v=GCG2KFzCe8o

    Thank you, Patient Advocate, for giving us the benefit of your observations.

    Patricia Carter

  6. We don't have a choice about the NIH. The reality is the NIH is the primary funding source for much of the medical research done in the world.

    We need (and can easily justify with reference to economic costs and estimating DALYs) a few hundred million dollars a year in research funding. The only way to do this is somehow get through to the NIH.

  7. Thank you PA.
    Your comprehensive report and analysis is very helpful, and greatly appreciated.