The “Most Famous Scientist in the World” Visits Stanford – Lauds Davis’ End ME/CFS Project
The “most famous scientist in the world” visited Ron Davis and his End ME/CFS group a couple of weeks ago and gave the project a thumbs up. James Watson and Francis Crick produced arguably the single most important breakthrough in science in the past 100 years with their discovery of the structure of DNA in 1953. A couple of weeks ago James Watson spent a day with Ron Davis and his team going over their End ME/CFS project.
James Watson, Janet Dafoe and Ron Davis
Over his 35 years as director, Watson built the Cold Spring Harbor Laboratory (CSHL) into one of the world’s leading research institutions. It now contains over 50 labs and employs over 600 researchers. Eight Nobel Prize winners have done their work at CSHL.
Watson is also credited with mentoring or supervising many graduate and post-graduate students who went on to have stellar careers, including four future Nobel Prize winners and Ron Davis.
Watson was also a seminal figure in the genetic field’s version of President Kennedy’s moonshot – the Human Genome Project. Watson headed up the project for two years until he resigned to protest NIH’s Director Healy’s attempt to patent gene discoveries stating “The nations of the world must see that the human genome belongs to the world’s people, as opposed to its nations.” (The Supreme Court later ruled that genetic sequences cannot be patented.) He has also protested the Vietnam war and nuclear proliferation. In 2007, citing the need for personalized medicine, James Watson became the second person to publish his fully sequenced genome online.
Watson’s controversial statements regarding race and intelligence lead to his resignation from the directorship of Cold Spring Harbor Lab in 2007. (He later apologized for them).
Ron Davis and his wife Janet Dafoe’s history with Watson dates back decades. Watson supervised some of Davis’ work at the Cold Spring Harbor Lab, and when Davis left for Stanford he returned to Cold Spring in the summer to teach classes for several years. During one period Janet worked for a time at his office. Janet said they’ve known Watson for many years, they stayed at his home when Ron was teaching there, and have even backpacked together. They know him as a great intellect and a good friend who sometimes lacks a filter that most people have.
Some people will never forgive Watson for his remarks (he apologized for them), but he has successfully lead some of the largest research institutions and research efforts in the world, and at 91, he is arguably the most famous scientist in the world. He was reportedly greatly intrigued by Davis’ ME/CFS work and bothered by how little resources ME/CFS has received given how serious it can be and how prevalent it is.
Given the many connections Watson has gathered over the years he could impact the course of ME/CFS simply by whispering in the right person’s ear about this really interesting disease…
The Seahorse and the Nanoneedle
At least four groups (Isabel Barao – SMCI grant, Avindra Nath – NIH Intramural Study, Maureen Hanson (NIH grant), and Victor Darley-Usmar at the University of Alabama at Birmingham) are using a technology called the Seahorse to study energy production in chronic fatigue syndrome (ME/CFS). This technology is able to simultaneously measure both the glycoytic and mitochondrial energy pathways in many types of cells.
The Seahorse can be used to create a “bioenergetic health index” that shows how well cells produce energy in a variety of different environments. You can use the Seahorse to hit cells with all sorts of things and see how they respond. If you had a machine in your bedroom, you could see how your cells respond to the energy producing supplements you’re taking, for instance.
It appears to be the leading technology for measuring energy production of cells. So what the heck is going on with Ron Davis and Seahorse? Davis is consumed with figuring out what is turning off the energy in ME/CFS cells. Is he riding the Seahorse?
Ron Davis and James Watson with Rahim Esfandyarpour – the developer of the nanoneedle
Davis said he’s actually used the Seahorse in the past and is going to use it again shortly. Why? Because, get this, he has an idea about what’s blocking energy production in ME/CFS patients’ cells and wants to test it out using the Seahorse technology.
In the long run, though, he’s going to stick with the nanoneedle tool that his student Rahim Esfandyarpour developed using nano fabrication technologies. Why? Because again, in the long run, Davis believes it’ll give him more useful data.
As always, it seems, Davis is thinking long term. These “nanoneedles” aren’t just designed to measure energy production in ME/CFS patients. He sees them as potentially producing the first biological diagnostic marker for ME/CFS – and an inexpensive one at that.
There are biomarkers and there are biomarkers. A biomarker that’s too expensive or difficult to administer won’t fit the bill. It’s pretty clear, for instance, that natural killer cell dysfunction is off in ME/CFS, but the NK test is a difficult one which only one lab (Mary Fletchers’) does correctly. The two day exercise test might be a fine diagnostic test if only it weren’t expensive and time-consuming, didn’t require sophisticated equipment that not everyone has access to, and didn’t temporarily wipe patients out in the process.
Davis’ nanoneedle, on the other hand, could produce a quick diagnostic test for pennies. By hooking it up to an IPhone, the whole test could take about 15 minutes to complete.
Having a cheap, biological test for ME/CFS which targets energy production of all things would clearly be a game-changer. Imagine the simplicity of the message: energy really is low in “chronic fatigue syndrome”.
We’re still a ways off from that. Davis is pleased with how the tool is functioning, but he can’t say it can produce a diagnostic biomarker until it’s been tested in many people with many different diseases.
The next step is transforming the chip, if I have it right, into a wafer so that it can process hundreds of samples quickly. Davis said he has his electrical engineers working on doing just that.
That wafer is also the key to Davis’ finding a drug for this disease as well. Davis plans to introduce drugs into patients’ serum and then use the wafer to see which drugs or substances turn ME/CFS cells into energizer rabbits or sloths.
Progress On the Immune Front
Mark Davis runs the biggest immune lab at Stanford. He also happens to be a friend of Ron Davis and he sits on the Open Medicine Foundation’s Scientific Advisory board. Mark’s been working with Ron Davis and that work is starting to produce something. Ron was mum on what Mark is finding, but said that it looks highly significant – significant enough apparently for Mark to send four of his graduate students over to Ron’s Genome Technology Center to work on it. Ron said they’d just cleared space in the lab for them.
That’s might be doubly interesting given that both Mark Davis and Derya Unutmaz, at the Jackson Genomic Lab in Connecticut, have similar interests. Both are fascinated by T-cells and both are developing immune signatures of disease and health. Both appear to be making real progress in ME/CFS and both put in applications to produce an NIH ME/CFS Research Center. Mark Davis is part of Ron Davis’s application, and Unutmaz put in his own. Could they be finding similar problems and if they are, might the two labs collaborate if they both became research centers?
Movement
Things are clearly picking up for Ron Davis. Two years ago he was holding fundraisers at his house for his Stanford foundation and trying desperately to marshall support among Stanford faculty. Davis’ message about ME/CFS seems to be getting through. Janet Dafoe told me she was pleased and heartened at the broad and enthusiastic level of support Stanford researchers and administrators provided for Davis’s NIH funded ME/CFS research center application and for his ME/CFS research in general.
I asked Davis if he had $5 million/year could he do the work in the Stanford Genome Technology Center? Absolutely, he said. Let’s take a look at what’s happening at Ron Davis’ home at Stanford.
Stanford Genome Technology Center (SGTC)
The SGTC is Davis’ baby; he’s the director. It was created in 1993 and contains about 40 staff members. Originally designed to build the next generation technology needed to make genomic analyses efficient and cost-effective, the SGTC helped create the field of commercial genomics and has spun off several companies. It’s now involved in developing many new technologies. The SGTC’s website is a couple of years out of date, but lists some 60 patents and over 400 publications that have come out of the Center.
A list of completed projects includes things like “thermocyclers, DNA shearers, plaque pickers, micro-centrofuges and oligonucleotide synthesizers”. Some of its current efforts involve creating tiny nanosensors to do metabolomic screening, developing a handheld device that can cheaply and quickly identify biomarkers and pathogenic bacteria, developing ways to combine MRI’s and the MRS technology, and developing cheaper and more effective ways of sequencing DNA using thermosequencing.
Plus, there’s the “nanoneedle” being used in ME/CFS which could produce the first diagnostic test (and a cheap and easy to administer diagnostic test at that), illuminate what’s blocking the energy production in ME/CFS, and help determine which drugs may help. That’s the possibility you get when one of the premier inventors of our age gets involved :).
The Future
A couple of weeks ago Open Medicine Foundation reported that they’d received another $1 million in donations. Davis doesn’t have the money he needs to fund his vision of a collaborative network of individuals working together to solve ME/CFS, but that network is definitely forming. (That’s for another blog). From quite humble beginnings, Davis and the Open Medicine Foundation have progressed rapidly. We’re not nearly at the $5 million/year Davis needs to fulfill his vision, but if they can keep up the momentum who knows?
Nobody can predict what comes next. Davis has produced at least four technologies that have radically changed the field of genomics, one of which directly made the Human Genome Project possible. I asked Davis if he, pioneer in the genomics field that he’s been, could have imagined how much that field has progressed. He said, “no”. It’s gone much further, more quickly than he would have thought.
That’s a reminder that we have no idea what the future will hold. Given the resources available, researchers produced wonders in genomics. We shall see what happens in ME/CFS.
- Next up – how an inventor of the Seahorse technology got involved in chronic fatigue syndrome
Cort, Olav Mella also said at iimec12, that they used seahorse in Norway.
Nice…Thanks for sharing that. It helps when researchers are using the same technology.
reading this makes me think that star trek technology will someday become a reality-sorry, a little off track, but it just popped into my mind :))
🙂
Ron loves the idea that he and team might end up making a tri-corder!
Everything stopped at Cal-Tech when we were there; everyone was watching Star Trek every week. It was so much fun!
Hi, so good to see this work being done!! Thank you!!Then…our local ME org witnessed a seemingly MIRACULOUS and curious recovery of one of our members some years ago…might that also hold some key?? He was diagnosed with ME, severely disabled for more than a decade, then a series of unusual circumstances in his health situation that seems to have triggered an almost instantaneous recovery….I’m personally witness to his years of suffering and now his years of good health. He chronicled his story on the link below: ttp://www.noeticholdings.com/ken/
Thanks E for passing that on 🙂
DEAREST DR JANET DAFOE….I HOPE SOONEST TIME JUST IN TIME-.ALL YOU COULD FIND AND TREAT THE CURE AGAINST CRONIQUE FATIGUE SYNDROME…A VERY TOP POWERFUL BEAST THAT EVERY DAY DESTROY MILLIONS PEOPLE IN THE WORLD IN MY CASE I TREATED SINCE 4 YEARS WITH POWERFUL AND IMPROVED DOSAGE WITH L-ACETYCARITINE ALDO L-ARGININE IN INTRAMUSCOLAR DEPOT INJECTIONS….BUT 4 3 YEARS THIS MEDICINE TRATMENT SYSTEM IS FUNCTIONED..BUT RECENTLY AFTER 1,5YEARS PASSED IN GERMANY IN A VERY STRESSED WAY..THE CFS RETURNED IN MY LIFE WITHOUT A SOLUTION PLEASE CAN TELL ME IF IN MILAN OR ITALY THE NAME OF BEST INTELLIGENCE HOSPITAL CENTER WHER I CANGO TO ASK THEM TO INTENT TO CURE ME OR IMPROVE AND UPDATE MY LIFE-STYLE AS I CAN’T GOING ON TO WORK??SINCEA LONG TIME MANY MANY THANKS 4 YOUR REPLY THE BEST WAY SEND ME PLEASE A E-MAIL TO …avvocatojeantartaglia@hotmail.com o mobile phone ITALY 0039/351-0485772 ALSO WITH SMS
AVVOCATO/PENAL/CIVIL LAYER JEAN TARTAGLIA MY BEST REGARDS TO U
hello Cort,
i don’t know if you could have more informations about that but…
a man from our french-sfc-association is gone to london to hear the Ron davis conference.
it seems that Ron has found a molecule: suramin, who make safe again the blood from sfc ill men….
is it a good information ?
thx
sebastien
Right now it’s a possibility. Suramin comes from Dr. Naviaux, though, who just tested that drug in a very small trial in autism. Dr. Naviaux wants to explore it in ME/CFS as well. What worked in a small trial in autism might be helpful in ME/CFS: it’s really a hypothetical at this point but it’s definitely worth trying. I’ll have a blog on the autism trial coming up.
the information don’t come from Naviaux but from Davis.
It seems that Davis tried suramin in sfc blood on his small test-puce…Healthy cells in the sfc blood continued to function normally with suramin…
Interesting! Very interesting….Thanks for passing that on. That’s good news, indeed 🙂
I have a wealthy friend who is very interested in CFS and would like to make a donation (s). Which do you think would be the best groups,and how do you get in the studies these folks are doing?
For me there are three groups that I can think of right now
Health Rising – Please ask your friend, though, to consider a side donation to Health Rising. It hasn’t escaped my notice that David Tuller has in last two weeks raised about what Health Rising raises in a year to continue his good work on the PACE trial. Good for him and good for the ME/CFS community in supporting him. Please note, though, that HR publishes all year long, that it provides a great deal of information, and the money we raise also pays for an expensive website to run and maintain and is my major source of income ; i.e. we could use some support if he or she is willing to do that 🙂
after EBV/HHV6/toxoplasmosis/etc were (for the most part alternatively) removed this https://soofjuh.files.wordpress.com/2015/08/index.gif started happening in my thyroid, brain, adrenals and a bit of heart, now releasing absurd amounts of neurotransmitters, hormones and whatever else those parts produce
don’t need a Seahorse to know what’s wrong with ME ;o)
Cort, Have you looked into the cost of staying overnight near Stanford for the Community Symposium on August 12? Just wondering. It would be wonderful to attend but probably out of range for most of us with CE/MFS. The cost for the symposium is certainly reasonable.
Fortunately I have a place to stay but yes, costs for hotel would probably be quite high. Maybe we could find places for people to stay (???)
Hi both,
I just bought my ticket. I’ll be looking into accommodations and will post any good findings.
I don’t live too far away. However, I can’t drive (sensory processing issues) and the public transit would add ~2 hours. If I have to get up at 5 I might be gormless at the Symposium.
I can’t seem to find any update from the iimec12. Anyone knows where to find more information from the conference?
Here is the link to the report:
http://www.investinme.eu/IIMEC12.shtml#report
Click the banner if you cannot see the report at first.
When I was diagnosed with ME/CFS in 1986 Prof John Dwyer (immunologist) used my T cell count to confirm diagnosis. I think it was the T3’s that were very low.
Esther, T3 is a thyroid hormone. The thyroid produces T4 and converts it to T3. However, in many CFS patients, the conversion doesn’t happen.
Janet
How can someone with long term M.E. get invovled with Dr Ron’s trials ?
I’m sure that we’ll find out when Ron or Bob Naviaux starts doing trials. You will probably have to be close by or seeing the doctors that do the trials.
I don’t want to be a wet blanket but am I the only one who gets a sinking feeling in my stomach when I read article after article now about research into energy production in “MECFS”…? Who cares about that, I say?
I don’t have MECFS though (disclaimer), I have ME. At least that’s the diagnosis I was given 34 years ago by an experienced physician (not a group of scientists at a brainstorming session), and I don’t fit the criteria for CFS or MECFS – fatigue is most definitely not my overriding problem, it’s not even always present anymore. So that excludes me from any definitions containing CFS (and marginalises me even further).
So anyway, back to that sinking feeling, neurological, cognitive, sleep, severe muscle pain and weakness (as described by Melvin Ramsay, and presenting themselves in ever new and frightening ways as the years roll on with no treatment), have remained front and centre for me, along with the other well-documented issues that develop over time in chronic ME, such as untreatable thyroid and other abnormalities that don’t neatly fit any other diagnosis. I follow the classic relapse/remission pattern of illness (not by choice). Fatigue – if that’s what you want to call it, sudden catastrophic loss of energy following physical or mental exertion seems more correct to me – is present in the relapses, not in the remissions.
So… are any studies being done into plain old unfashionable ME I wonder, or is “energy production in chronic fatigue syndrome” the new sidetrack, however well meant? I further despair if it is.
Please understand that no studies have ever been done in M.E. to my knowledge. Many researchers, including some federally funded researchers, are using the Canadian Consensus Definition to find their patients, so they are probably studying something close to “M.E.” Fatigue is a major component of the CCC (it’s the first symptom noted) – and when surveys are done it’s the most common symptom found – it’s found in virtually everyone in the survey – with post-exertional malaise ranking next. If you experience fatigue when you’re exceeding your boundaries then I think you fit in that group – which means that your ME is being studied.
Granted – quite a few subsets will likely be revealed over time with classic ME surely being one of them. It’ll take some time, though and some bigger studies. The collaborative study between the NIH research centers will probably be one of them 🙂
Can’t help agreeing with Eleni, 35 years with M.E and the symptoms are so much more than Fatigue, SEID, poor sleep and muscle pain. I hope they will be looking at the ME group, including food and chemical sensitivity. CFS is a far too broad, unspecific name.
Well, there certainly haven’t been any further studies done into ME since it was reclassified as a subset of CFS. That’s basically my gripe.
All due respect, but reclassifying a well-described, well-documented illness as a subset of a poorly defined one which doesn’t actually include all of its core symptoms doesn’t seem to me to be a solid research base for studying that illness. For example, urine retention and muscle weakness to name but two (recorded symptoms of what you call classic ME), which are central symptoms for me to this day, don’t seem to have survived the editing process to be included in the ever-evolving CFS definitions (including the CCC). Also, as I said, fatigue is not front and centre for me anymore, it’s not even always present, but it MUST be for a diagnosis of MECFS. So not only are my core symptoms disappearing from official definitions, new criteria have been applied that doesn’t fit me either. I recognise myself in the old ME definitions. I don’t recognise myself in the new MECFS definitions. Now, granted, this may be neither here nor there if symptoms differ slightly depending on when and where epidemics occur, but then again this kind of editing might be key to why we still don’t understand what’s causing the illness.
In any case, it isn’t logical to me that they study a syndrome that is “probably something close to ME” rather than study ME itself. Why? It predates CFS by decades. I personally have no idea what disease they are actually studying anymore. Does anyone? I know that any research is probably better than none, but, after 34 years of false dawns I believe that we still need to be asking the hard questions.
Hi Cort,
Great article, as always. Well, I think you outdid yourself with this one!
My friend at MendelsPod recently interviewed Dr Davis. I asked him to add a link to this article on his page (it’s at the bottom). I thought perhaps you could add his interview to the trackbacks/pingbacks? Either way, the interview is worth a listen:
https://mendelspod.com/podcasts/last-major-disease-be-studied-ron-davis-stanford-thinks-so/
The audience of MendelsPod are largely biotech folks in the valley. Hopefully this interview will pull in some more minds, tech, and resources to the cause!
Thanks again for all the work you put into HealthRising!
-Sean
You got it – great interview. I’m putting it out on Facebook, and thanks for the link 🙂
Could you give a description of the nanoneedle, please? Not only is it curious, but there are people on the internet claiming that we’re being experimented on by mad scientists using nanotech. I’m sure you’ll find it if you do some searching on youtube. But my point is, mentioning it and not saying what it is or what it does is opening a door for unenlightened speculation.
The nanoneedle is the little tool that measures the energy level of the cell. I’m not sure how it does this – I think it does through measuring the electrical conductance of the cell in different states (?)