Reprinted with the kind permission of Cort Johnson and Health Rising
By Cort Johnson
The Real Action – The Working Group
Davis has noticed that waiting for data to be validated in journal publications isn't exactly a pathway to quick results. Far better, he thinks, to give new data – recognizing that it's not been completely validated – the chance to inform and strengthen other researchers' work. (Suzanne Vernon did something similar with her Cold Spring Harbor meetings). The working session actually was planned before the Community Symposium; it's part of Davis' vision of a collaborative team of researchers working together to solve ME/CFS.
Drs. Bateman and Bell will provide clinical expertise to PhD's from a variety of fields. Some research names will be familiar (Naviaux, Younger, Hanson, Light, McGregor) but many others (Tompkins, Olivera, Xiao, Berg, Esfandyarpour, etc.) are experts from other fields whom Davis has enrolled in his fight to beat ME/CFS. Two Nobel Laureates (Paul Berg, Mario Capecchi) are attending, as well as several department heads/directors (Ron Tompkins, Michael Synder) and one person from industry (Integrative Bioinformatics). Stanford and Davis' Genome lab is widely represented.
That's a lot of brain power to assess the most recent findings in ME/CFS, suggest new directions, and produce new insights into ME/CFS.
The Community Symposium was conceived after the workshop, but it is a rare chance to hear from and interact with researchers doing some of the hottest work on ME/CFS.
You can either physically be there, view it live for free over a Livestream feed (how often does that happen?), or watch later via DVD's or YouTube downloads. The $75 participation fee for those who want to physically be there covers the costs of hosting the event and the breakfast and lunch provided. It's a chance to hear, ask questions and mingle with some of the top researchers in the field. We should hear some exciting early results from a number of researchers.
Ron Davis, PhD – last seen using the Seahorse machine to determine if something in ME/CFS patients' blood is blocking their cells' energy production. He will be speaking on some early results from the Severe ME/CFS Big Data project.
Bob Naviaux, PhD – last seen publishing a successful pilot drug trial in autism and possibly about to gear up for one in ME/CFS.
Chris Armstrong, PhD – last seen doing a long term metabolomics study and attempting to rejuvenate metabolic functioning in ME/CFS patients.
Jonas Berquist, PhD – last seen doing metabolomics and proteomics studies on the cerebral spinal fluid of ME/CFS patients.
Mario Capecchi, PhD – last seen getting a Nobel Prize and exploring the interface between molecular genetics, the immune system and central nervous system diseases.
Mark Davis, PhD – last seen publishing (with Dr. Montoya) the biggest immune study ever in ME/CFS – which should go far to help legitimize ME/CFS. Ron Davis thinks Mark Davis' next project involving T-cells may be even more significant. NINDS director, Dr. Koroshetz, also singled out Mark Davis' findings in the recent NIH Teleconference call. Davis will talk on those findings in the Symposium.
Maureen Hanson, PhD – talk about an exciting project: last seen examining the effect exercise has on the immune system and metabolomics.
Alan Light, PhD – last seen demonstrating how the receptors that react to exercise by-products go bonkers in ME/CFS and FM.
Neil McGregor, PhD – last seen promoting the use of metabolomics to study ME/CFS.
Baldomero Olivera, PhD – last seen developing ion channel drugs to relieve pain.
Wenzhong Xiao, PhD – last seen analyzing the Severe ME/CFS Big Data project results.
Rules of the Game
Ron Davis is easy to talk to and has a great sense of humor – you'd never know you were talking to one of the great figures in biology. Davis has won some of the highest prizes in medical research, has been mentioned as a Nobel Prize candidate, and created some of the building blocks that made the human genome project possible.
He's a different sort of researcher than we've come to expect. Running a major lab at Stanford, Davis inhabits a different world than we're used to with ME/CFS. Plus, he's 76 years old, has nothing to prove, and wants to save his son's life. Given that context, one might think that Davis would be out tooting his own horn and ginning everyone up constantly. What Davis really wants to talk about, though, is not the latest breakthrough, but how to do good science and just how difficult and rare that is.
He's just relentless on the subject. Whether it's doing good studies, the grant awarding process, publication procedures, or study methodology, this theme crops up again and again. Davis has had a life-time of solving complex problems. Now, it's solving ME/CFS. It's a game he really wants to win. He's won games like this before – and he dearly wants to communicate how to win this game.
Rules of the Game (Note – I came up with these rules after listening to Davis)
Davis has dealt with staggeringly complex problems throughout his career (his "former life" he says) – he loves the really knotty stuff – but that legacy has left him with a real appreciation for just how incredibly complicated the human body is. He knows the curve balls the body often brings. He never underestimates its ability to fool us. So one of the rules is to be humble and expect surprises.
One of the rules of being successful at the game of solving ME/CFS (or any biological mystery) is recognizing that surprises – false leads and unexpected breakthroughs – are inevitable. That's a humbling thing – we all want quick answers – but once you recognize that surprises are inevitable, you don't get too carried away at any one finding. You stop discarding things that don't, at first blush, make sense. Instead, you investigate them fully. You try and poke holes in your breakthroughs. Above all you try to avoid wasting precious time and resources on something you should have discarded long ago.
Davis said his team is following many preliminary leads, but I got the feeling that it's the results they didn't expect (they are getting some surprising data) that he finds the most interesting. Some of those unanticipated results, he said, will turn out to be fortuitous, but others could change everything.
That kind of thinking is rare. We tend to go where we know to go. After all, humanity almost destroyed the ozone layer because researchers' computer programs automatically discarded the "aberrant" reading that they thought must be wrong.
It takes some daring to think outside the box. Davis wondered how many ME/CFS patients with lymphoma it took before two doctors recognized that Rituximab was helping with ME/CFS. No one at that time would put a chemotherapy drug and ME/CFS in the same sentence – and that kind of closed thinking had consequences; it probably took us much longer than necessary to glom onto Rituximab than it could have.
Davis clearly does not want that to happen with ME/CFS. Investigating everything is part of the process. That seems slow, but it really isn't in a disease where not that much is known. Unless you look at EVERYTHING, you might – in fact you almost certainly will – miss anything which is out of the ordinary – hence the Open Medicine Foundation's Severe ME/CFS Big Data project and the NIH's Intramural study.
Collaboration is Key
Davis has many times said he can't solve chronic fatigue syndrome on his own – the disease is simply too complex. He needs to collaborate, and that means enrolling researchers who have successfully worked on complex projects before, who are experts in the fields he is not expert in, and people with a high intellect to arrogance ratio.
Davis said his PhD advisor had the highest intellect to arrogance ratio of anyone he's ever known. That mentor basically provided a template for effectiveness and collegiality that Davis has followed ever since. If you're arrogant (unless you're an out and out genius – it is a ratio, after all 🙂 ) you probably won't be welcome at Davis' table. Davis wants people who work well with others.
Luckily, arrogance is not normally a problem: biology, Davis, said, has a way of humbling one – the really smart people know enough to know that there's too much that they don't know for them to be arrogant about the little they do know.
Davis didn't say so, but the underlying message for me was that it's going to take time. We are getting some good results, but my guess is that the process – bringing good people in, getting them to collaborate, getting them thinking more and more about ME/CFS – is the most important thing right now.
If the field follows that kind of process, if it focuses on doing the best work, on collaborating, if it's fiercely critical and remains curious and creative – ME/CFS will yield its secrets and fold.
Find Out How to View the Symposium Here.
About the Author
: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising