OMF Symposium to Provide First Look at Metabolomic / Immune Results in ME/CFS

Discussion in 'Advocacy, Contests and Events' started by Cort, Aug 5, 2017.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    The Real Action - The Working Group

    The Open Medicine Foundation's "Community Symposium on the Molecular Basis of ME/CFS" is coming up next week. The Symposium follows a two-day workshop - an ME/CFS research jam session that dozens of researchers and MD's will participate in.

    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 Symposium

    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.

    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.

    Last edited: Aug 6, 2017
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  2. LavenderDojo

    LavenderDojo Member

    Thanks Cort!

    Here's the big Mark Davis, Jarred Younger, Montoya et al study mentioned above:

    Cytokine signature associated with disease severity in chronic fatigue syndrome patients

    "On average, TGF-β was elevated (P = 0.0052) and resistin was lower (P = 0.0052) in patients compared with controls."

    I'm excited to say that my rheumatologist has been testing for, finding, and treating elevated TGF-beta in his MECFS and fibromyalgia patients for years. I'm doubly excited to say he will be making the trip to attend the symposium. I really hope many of the speakers and researchers stick around to talk to people at the reception.

    Personally, I can say my TGF-beta levels fluctuate in step with my symptom severity. Quest Diagnostics offers it as one of their blood tests:


    Sean Glaze
    UK Margaret likes this.
  3. Issie

    Issie Well-Known Member

    TGF beta 1 is also elevated in CIRS and those with connective tissue disorders. Having just been DXd with CIRS and having all the testing be positive. Sends me off in a different direction.

    Merida and Lissa like this.
  4. Simon

    Simon Member

    Thanks, Cort

    He's got Michael Snyder there too? Oh my.
  5. HMBCheryl

    HMBCheryl Member

    Are you going to the Symposium in person? I will unfortunately have to listen in, as this is the weekend I will be moving out of the Bay Area to pursue mold avoidance and treatment for CIRS in Arizona. Highly unlikely that I could manage the full day of sensory stimuli and potential chemical hits from people's fragrances anyway. What an amazing event. Can't wait to see your blog afterward!
  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Great to hear Sean. TGF-B is one of the few cytokines which have cropped up quite a bit in cytokine studies but it don't get talked about much....Glad to hear that your doctor is on top of it. There will be a breakfast and a lunch and a reception! - So lots of opportunities to chat with the researchers I think.
  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Yes I will be there. Camping outside of Truckee now and then I will zoom down for the event.

    Good luck with the Arizona move - have you picked a spot yet?
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Michael Synder - I had never heard of him but the guy has done some stuff:cool:. Another catch by Ron Daivs

    Last edited: Aug 6, 2017
  9. LavenderDojo

    LavenderDojo Member

    Excellent. I really look forward to meeting you, Cort!

    On the TGF-β note, I found it really bizarre that P.D. White coauthored a meta analysis of cytokine studies:
    Chronic fatigue syndrome and circulating cytokines: A systematic review.
    "exercise made no difference to already elevated TGF-β concentrations. The finding of elevated TGF-β concentration, at biologically relevant levels, needs further exploration, but circulating cytokines do not seem to explain the core characteristic of post-exertional fatigue." Total lack of intellectual curiosity on their part. If cytokines are elevated pre-exertion, but don't spike post-exertion, that doesn't mean they're not playing a role. Their conclusion is analogous to saying "I was wearing this weighted vest before I went out for a walk. The vest weighs the same after the walk. Therefore the vest didn't contribute to how tired I feel"

    Step outside the realm of studies that are explicitly about ME, and, bingo, TGF-β turns off the conversion of T4 to T3. Dysregulated thyroid hormones, that could contribute to PEM. But White couldn't be bothered to read a paper that had already been out for 10 years:

    Transforming growth factor-beta promotes inactivation of extracellular thyroid hormones via transcriptional stimulation of type 3 iodothyronine deiodinase.

    Rant over. So much positivity in the pipeline now. I can hardly wait until 8/12
    IrisRV likes this.
  10. LavenderDojo

    LavenderDojo Member

    Thanks Issie, that's good to know. What other testing is there for CIRS? I may need to explore that direction.

    (TGF beta 1 is highly pleiotropic. It's also elevated in cancer metastasis and Alzheimer's, to name just a couple more)
  11. VLynx

    VLynx Member

    Cool. I'd love to meet you in person, too! I plan to be there, and am dragging my husband along... It's been a financial challenge arranging the trip, but I think it'll be worth it. And I love visiting my former home.

    I lived in Stanford area for over 30 years... now live in Arizona, which I'd love to escape. I don't know about mold, but I know that the heat is not good for me. Right now may not be the best time for mold avoidance in Arizona, though. The monsoon season has been very strong this year: it feels more like Hawaii here than Arizona! One inch of rain fell in about a half hour when I was in Phoenix a couple of days ago!
  12. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Yes, the heat in the southern part of the state is incredible! I forgot about the monsoon - I'm camping out elsewhere during the summer. See you at the Symposium :)
    Merida likes this.
  13. Issie

    Issie Well-Known Member

    There are a lot of test that I had done. Some other inflammatory markers. Gentic test to see if you could be unable to throw off mold and biotoxins. A Neuro Quant test to see if you have issues with brain swelling or compression. It can help tell if there is mold or Lyme or Alzheimers and even PTSD. Then there's test to see if there are issues with pituitary and osmolarity and hypothalamus and autoimmune. Basically if you look up the Shoemaker protocol and testing - you can find the info. My new doc - Dr Jennifer Smith is finding things that I've suspected and been trying to treat - but now I have more science to prove things. We had to back up a bit, as I wasn't tolerating the binder for mold - she suspected Babesia already and now Lyme. We are treating that and heavy metals and I was positive for MARCONS. Surprisingly the antibiotic my other doc had me on - I'm completely resistant to. In fact was resistant to 7 antibiotics. No wonder no herxing and really not much help in the end.
    I live in AZ and it is hot. There can still be issues with mold and biotoxins here. Check things carefully and make sure to avoid going outside when there are dust storms. The spores from the cactus carry Valley Fever and that's a whole other issue that's possible. I love AZ and the sun. But it has its problems too. There are a few months that are almost unbearable but the other times of the year it's wonderful.

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  14. UK Margaret

    UK Margaret Member

    I'm not a scientist. Just an ME patient with obvious reasons for having an interest in the science relating to ME.
    I don't pretend to understand all the science that is going on at the minute. I can get the gist of most of it but don't for heavens sake ask me to repeat it as I'd be flummoxed. But I do at least recognise two things.
    Firstly, the need for a collective push in the quest for answers to ME. For too long various scientists have done sterling work but it seems it's all been alone and in the background. Given the wall of stubbornness that is the biopsychosocial model it seems to me the only way they are going to move forward is if scientists and researchers from around the world and from all the various related fields put their heads together and attack the problem from every angle and keep sharing data openly.
    The other thing that stands out like a country mile to me, even as a lay person, is that the scientific research field is getting bogged down in the murky world of commercial interests and career protecting. Ethics and integrity have seemed to be disappearing for quite some time. As a patient I don't care what the answer is, I just want to know the truth.
    It is for both these reasons that particularly as a UK patient I find it refreshing and encouraging to follow (if not understand) the ever evolving work of honest and open people like Ron Davis. And it is even more encouraging to know that those who share his ethical principles have not actually disappeared but are increasingly coming out of the shadows to join him. Long may it continue!
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  15. Janet Dafoe

    Janet Dafoe Active Member

    Mike Snyder was Ron's PhD student. Then he was a prof at Yale. Then Ron helped recruit him back to Stanford as Chair of Genetics. He's a smart and wonderful person. Mike is collaborating and helping with the ME/CFS research.
    Last edited: Aug 19, 2017
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