MECFS Collaborative Research Center at Stanford University

01/16/2025

Ron Davis's message of hope for 2025 and plea for help

by Ronald W, Davis, PhD.

Dear ME/CFS Community,

I think of you all every day as I work to untangle the complex molecular basis of this horrific disease. We have made a lot of progress lately, and many scientists around the world are taking the data and making much more informed hypotheses about the causes and potential paths to treatments. I am very optimistic that soon the major mechanisms that initiate the disease will be found. This will allow a concerted effort to reverse the process and find a cure.

♿️ 𝐀𝐜𝐜𝐞𝐬𝐬𝐢𝐛𝐥𝐢𝐭𝐲: 𝐋𝐢𝐬𝐭𝐞𝐧 𝐭𝐨 𝐭𝐡𝐢𝐬 𝐩𝐢𝐞𝐜𝐞 𝐫𝐞𝐚𝐝 𝐚𝐥𝐨𝐮𝐝:

🔗 https://www.whitneydafoe.com/mecfs/audio/25-01-14-from_ronald_w_davis_2025.mp3

This work requires funding and unfortunately, NIH is not very supportive and funds very little ME/CFS research. So I must ask all of you - patients, parents, family, loved ones, friends, supporters - to donate to my research so it can move forward as fast as possible. The more funding I have, the faster I can make progress and the more projects I can take on at one time. This significantly speeds up research and the hopeful discovery of a cure.

If you can, please donate to my son’s birthday fundraiser, where 100% of your donation goes directly to my research.

http://spot.fund/FindACureForMEcfs

Right now we have multiple projects making progress. Projects on the itaconate shunt, Manganese, BH4, neutrophils, red blood cell deformability, genetics, pathogen hunting, and oxidative damage. We constantly communicate and collaborate with the best researchers around the world. We are working with an excellent team at the University of Utah who have developed three different animal models of ME/CFS and Long Covid - bacterial, mouse and zebrafish. This is allowing us to test all known drugs and multiple supplements and natural products, some of which are demonstrating an ability to block the disease process. Taken together, this work fills me with hope that my son and all of you will have some treatment possibilities quite soon. Please hang in there. We are with you every day and I send you all my love and solidarity.

If you can, please donate to my son’s birthday fundraiser, where 100% of your donation goes directly to my research.

http://spot.fund/FindACureForMEcfs

Thank you all so much for whatever you can contribute and may all ME/CFS patients be cured as soon as humanly possible.

- Ronald W, Davis, PhD.

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06/23/2022

Today, we are delighted to share the next video in our series of research updates from Ronald W. Davis, PhD, Chair of OMF Scientific Advisory Board & Directo...

06/15/2022

Today, we are delighted to share the first in a series of research updates from Ronald W. Davis, PhD, Chair of OMF Scientific Advisory Board & Director of th...

06/10/2022

Ron Davis gets a win but will he ever be given the chance to bring his core disrupting technologies to ME/CFS? An ME/CFS Moment: something unexpected happens that indicates the tide is rising for the ME/CFS field. This could include something like a big grant opportunity for the field from […]

01/20/2022

Remembering my friend Ron Tompkins, 1-18-22, by Ronald W. Davis

I am greatly saddened by the news that my friend and colleague Ron Tompkins died last night. For the past 21 years we have worked closely together on numerous academic and commercial projects. He was a gifted physician and a remarkable scientist. The fifteen years we worked on the Human Trauma Research Project were some of the most gratifying of my scientific career. Dr. Tompkins was in charge of the project, working with about 60 other physicians and scientists. I was in charge of the genomic aspects. He ran it with great skill, to my great admiration.

He empowered people to be engaged in the project doing what they do best. The participants came from all over the country, and we met in the Chicago O’Hare airport every 3 months to present the newest research findings, problem solve, and discuss ideas for how to proceed. It was remarkable that almost no one ever missed one of these meetings over its ten years of operation. This was a complex project involving diverse specializations, but Dr. Tompkins ran it without conflict. Everyone knew that this was special and important - likely to produce significant breakthroughs. And it did. We discovered that, within a few hours of the trauma, we could predict the patients who would do well and begin to recover in a few days vs those who would linger, some never to recover. And surprisingly, it was not correlated with the extent of injury. Before this project, trauma experts relied on mice models for their understanding of the effects of trauma. We were able to show, using our molecular approaches, that the response to trauma of mice was extremely different from the response of humans. (The correlation of gene expression during recovery from trauma between Mouse and Human is .06) We continued to analyze the data years after the project ended. Our work together developed into a very great and trusting friendship.

Towards the end of the Trauma project, my son became ill with ME/CFS and I knew I had to do everything I could to crack the disease at the molecular level and figure out how to help him and the many other suffering patients. I immediately began recruiting my most brilliant, creative and scientifically rigorous colleagues and friends to help. Ron was one of my first recruits. He was knowledgeable about a huge variety of topics, from chemical engineering to medicine to big data analysis to biochemical pathways. He immediately recognized the similarities between trauma and ME/CFS and enthusiastically joined me. He was very strong on innovation and felt we should focus on being innovative, but it was difficult to find funding for innovation. He strongly supported the innovative work that I was doing in my lab. He knew it would be a difficult challenge. Since then we have worked together closely, planned and attended meetings, shared our findings, ideas and plans frequently by phone and collaborated at every level. Ron has been truly incredible at recruiting scientists and doctors from the US and Europe to join our efforts. He embraced intelligence and inquiry, but was quite intolerant of arrogance and people who talked without expertise. He was one of my first recruits to the Open Medicine Foundation’s Scientific Advisory Board. He and Wenzhong Ziao set up the ME/CFS Collaborative Research Center at Harvard, funded by OMF, and delved into many aspects of the disease. Ron was my greatest source of information on how things in the body at the molecular level might translate into medical reality in patients and we spent hours and hours speculating about different treatments and how they might impact the body from a medical perspective. There is so much potential in what Ron created, and it has only been limited by his inability to get government funding, which greatly frustrated and angered him. He often said that the biggest problem is not the complexity of the disease, but to get some government agency to take it seriously and adequately fund it. He and I both knew that it would take a big team and serious funding to solve this devastating, complex and ubiquitous disease.

Ron was such a lovely, engaging man. The patients loved talking with him at our Community Symposia at Stanford and vied for a seat at his table. He really enjoyed a great dinner with good wine, and conversation with laughs, and we loved having him over for dinner. My wife always cooked him salmon because he claimed it was the best he’d ever eaten in all his travels. He called her “The Salmon Lady”. Ron’s diversity and depth of expertise, his lively and enquiring mind, his inclusive and compassionate attitude, and his love of great food and a great discussion are unmatched. I am devastated by his loss and will miss him greatly.

01/13/2022

A great article about Ron Davis in the Times of London!

Here is a link with no paywall:

https://archive.is/2022.01.12-025300/https://www.thetimes.co.uk/article/could-this-scientist-have-the-answer-to-long-covid-5sszbxpz9

https://www.thetimes.co.uk/article/could-this-scientist-have-the-answer-to-long-covid-5sszbxpz9?fbclid=IwAR325nATxsNx6XOBcctzazzKUOQJ22RKrX7Ef48B3ZM5o3mkK0mLqJrukPA

The Stanford biochemist Ron Davis’s mission to cure his son’s chronic fatigue syndrome may be key to solving the crisis precipitated by the pandemic

11/23/2021

An update from Ron Davis on the Metabolic Trap Hypothesis on ME/CFS. Please subscribe to our youtube channel to be alerted of future video updates!

https://youtu.be/KegawiZ5-KQ

11/05/2021

A summary of the ME/CFS Working Group at Stanford Meeting September 8-10, 2021
by Ronald W. Davis, PhD, and Janet L Dafoe, PhD

This was a great meeting and showed a lot of activity and progress in ME/CFS in an ever-growing number of groups. Researchers presented unpublished and often preliminary results. This style of scientific meeting can greatly accelerate research because scientists learn new information much earlier. It can often take a year or more to get a research paper published. Because of the preliminary nature of the results, it is essential that they remain confidential and not made public. Therefore, this is a summary without too many details. The speakers are listed at the end.

There is continued search for a pathogen(s) that can sustain ME/CFS. Most studies look for DNA or RNA from a pathogen.In addition, EBV and HHV6 have gained renewed interest for researchers due to evidence of activation of these viruses in the absence of DNA replication and amplification.

There were a number of talks about the metabolomics of ME/CFS. This work is moving from finding lists of metabolites involved in the disease to investigating various metabolic pathways. A major focus is on the nitrogen and BH4 pathways. There is a new focus on pathways in the mitochondria. This is difficult to study because of the small amount of mitochondrial metabolites in blood samples. However, this focus may be at the heart of what’s wrong in ME/CFS.

There was new work presented regarding autoantibodies and immune dysregulation. It is believed this dysregulation is what is causing autoantibodies to be present. The next question is, “What is causing the immune dysregulation?” There was also new work on neuro-inflammation, which also might result from the immune dysregulation.

There was a preliminary report of the molecular changes occurring with PEM. This will be a major endeavor.

A major effort was reported of an extensive genetic analysis from published and unpublished DNA sequence data looking for single genes and combinations of genes and any correlations with phenotypes. This is the first attempt to put together these previously disparate groups of data, and it was exciting to see. Thus far, the results are preliminary, but this is a very important investigation.

We heard an update on red cell deformability. In previous work, some labs have found a difference in red cell deformability between patients and healthy controls, and one lab found no difference. However, it was recently discovered that oxygen levels in the blood have a major impact on deformability. New instruments are being developed to measure deformability under controlled oxygen levels. There is a clear difference in deformability between patients and healthy controls under low blood oxygen levels. Thus, this continues to provide promise for a fast and inexpensive biomarker and diagnostic test.

New results on metabolic traps were presented. It is possible that there are many different metabolic traps and that these traps may be the cause of a number of chronic diseases. The tryptophan to kynurenine trap has been the first to be explored as an underlying cause of ME/CFS. This trap was first demonstrated in a test tube using purified enzymes, but does it exist in vivo in isolated cells? Yes! It was demonstrated that yeast with the Human IDO1 gene inserted into it became trapped when tryptophan was increased in the medium. Work is now progressing to determine if Human cells can be trapped. Using the yeast system, screening is proceeding for an FDA approved drug that will reactivate the Human IDO1 enzyme and get the cell out of the trap. In addition, a new trap or energy bypass in mitochondria was presented that could explain the low energy in patients and PEM.

In between the presentations, there was a significant amount of time for questions, discussions, brainstorming and the forming of collaborations. It felt like the research on ME/CFS has reached a new level, and it engendered an ever growing spirit of hope for eventual treatments and a cure.

Particiipants:
Christopher Armstrong, Rahaf Assil, Lucinda Bateman, Jonas Bergquist, Joseph Breen, Lily Chu,Jane Collins, Laurel Crosby, Janet Dafoe, Mark Davis, Ron Davis, Kenny de Meirleir, Mary Dimmock, Donna Felsenstein, Jennifer Frankovich, Keith Geraghty, Arnaud Germain, Anna Gil, Ludovic Giloteaux, Eric Gordon, Michael Gresser, Andrew Crimson, Paul Guyre, Rebecca Hamlin, Maureen Hanson, Ashley Haugen, Craig Heller, Katrina Hong, Mady Hornig, Li-Yuan Hung, Fereshteh Jahaniani, Michael Jensen, Sharada Kalanidhi, David Kaufman, Betsy Keller, Ryan Kellog, Vinod Khosla, Seoyeon Kim, Nancy Klimas, Kevin Kramer, Crystal Lantz, Joshua Leisk, Susan Levine, Alan Light, Kathleen Light, Ami Mac, Jessica Maya, Roya Mazrouei, Neil McGregor, Alain Moreau, Karl Morten, Adam O’Neal, Anna Okumu, Robert Phair, Bhupesh Prusty, Anand Ramasubramanian, Amit Saha, Carmen Scheibenbogen, Liisa Selin, Jaime Seltzer, Amrit Shahzad, Peidong Shen, Richard Simpson, Michael Snyder, Rivka Solomon, Franziska Sotzny, Linda Tannenbaum, Ronald Tompkins, David Tuller, Marielle van Kooten, Vanessa Velasco, Jiandi Wan, John Whiting, Vicky Whittemore, Julie Whilhelmy, Wenzhong Xiao, Sitong Zhou

We are all extremely grateful to all the funders of this research, including, NIH, OMF, Vinod Khosla, international funders, and the awesome generosity of patients and their loved ones. As usual, the progress of this research is always slower than it potentially could be due to limited funds. Donations are so deeply appreciated!

09/19/2021

A list of those who participated in this year’s virtual ME/CFS Working Group Meeting! An amazing group of brilliant minds collaborating and discussing the future of ME/CFS research.

09/17/2021

Take a look at the agenda from our annual ME/CFS Working Group Meeting. We had an exciting list of speakers and even better discussion!

09/15/2021

https://doctorswith.me/founding-father-of-human-genome-project-joins-doctors-with-m-e-with-leading-evidence-based-policy-expert-as-honorary-fellows/?fbclid=IwAR1grSx3FGYWYiBmg-kTYWGa3EGXT21PWAYHJfOduUu0NapJBvG1gGcIvJA

Doctors with M.E. today formally announces two Honorary Fellows, recognised for the value of their contributions to ME/CFS scientific progress, Professors Ron Davis and Brian Hughes. Professor Ron Davis is a global authority on biochemistry, genetics and genomics, Director of the Stanford Genome Tec...

09/13/2021

Last week, the ME/CFS Collaborative Research Center at Stanford held its annual international Working Group meeting over Zoom. Janet Dafoe has provided the following update:

"The meeting was the best ever. Scientist after scientist with groundbreaking Molecular Research. Great discussions. Collaborations forming. We will put out the agenda and the names of all the participants soon. It really felt like progress. Putting puzzle pieces together."