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A message about the OMF-funded ME / CFS Collaborative Research Center at Stanford

An End of Year Message from Ronald W. Davis, PhD, and Janet L. Dafoe, PhD

We have accomplished so much with the amazing donations generously given to OMF and we are grateful. We have collected huge amounts of data in our Severely Ill Patients Study, which has yielded lots of information and hypotheses. We have developed 4 promising potential diagnostic tests, including the nanoneedle, and we are working on several more. We have published a paper on Red Blood Cell Deformability. We have developed the Metabolic Trap hypothesis, made much progress on testing it, and published it in a theoretical paper. We have begun collecting data on both toxic heavy metals and essential metals, which is beginning to suggest alterations that may contribute to symptoms. We have collected myriads of multi-omic data on families. These studies have already shown us a large number of molecular alterations in patients, but science is slow, and frustratingly underfunded. The rate-limiting step is always funding. We could do so much more and get answers faster with more funding. We have written many grants to NIH, but so far only one has been funded. Don’t believe anyone who says NIH isn’t funding Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) because they don’t get good grants!

In addition to funding our center at Stanford, OMF has also funded two new centers, one at Harvard and one at Uppsala University in Sweden. These centers are making progress on analyzing muscle cells and the molecular biology of spinal fluid in ME / CFS patients.

These centers are excellent and continue to need funding.

We have held three highly successful scientific meetings of our Working Group of incredible scientists working on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) from all over the world, and three exciting Community Symposia that have been Livestreamed all over the world with thousands of viewers. We have recruited many top scientists in their fields to work on this disease, involving not only them, but young researchers in their labs. This last year I was struck that we had over 60 highly qualified scientists discussing new findings and new ideas, all of whom need and deserve funding! NIH cannot say there are not good investigators in this field. We are actively recruiting them all the time. They urgently need funding! OMF is dedicated to funding as many as possible, but we need your donations to accomplish this ambitious goal.

We are writing to encourage you to continue your amazing donations to OMF. Without you we wouldn’t have been able to get this far! But we need to have continuous income to keep up our work on ongoing projects as well as pursue new ideas. The following is a list of some of the projects that need new or continued funding at Stanford:

  • We continue to analyze the Severely Ill Patients Study data, which is a huge job and continues to give us new insights. We are working on publications of this data.
  • We are continuously comparing all our diagnostic tests with each other and with Naviaux’s metabolomics profile in a complex “bake-off.”
  • We have ideas about new diagnostic tests that we want to develop and test.
  • We are developing a high throughput version of the nanoneedle. Once we have a high throughput device we will be able to discover what component in the blood is causing the nanoneedle signal. This component could be causing lots of the symptoms. Once it is identified, we may be able to inhibit it or remove it from the blood. We will also be able to begin testing FDA approved drugs. These projects also need funding.
  • We need funding to develop a version of the nanoneedle that could be used to diagnose patients.
  • We would like to generate brain cells in culture from patients, using stem cells, so we can test the metabolic trap in these cells. If we can put these cells into a metabolic trap, we will be able to investigate methods to get them out of the trap.
  • We want to continue developing tests for pathogens, including RNA viruses (e.g., enteroviruses), parasites and funguses.
  • We would like to expand our metal analysis to not only test hair and blood, but also measure the amount in individual cells.
  • We have discovered a number of metabolites that have never been measured before in patients that may be directly connected to major symptoms. We would like to initiate a broader metabolomic study to investigate this.
  • We are very aware that mold is a major factor in this disease for many patients. We want to investigate this. We have a lead on possible partial funding, but need more so we can hire an expert for this important project. We need support for at least two years of salary.
  • We want to test patients before and after CCI surgery in order to get an idea of what is happening at a molecular level in these patients and how it relates to ME / CFS.

This is a huge undertaking but we are confident that we can discover ways to provide treatments and eventually a cure for the millions of people suffering from this disease. We are personally 100% invested in bringing our son and other suffering patients back to a life they can enjoy. We will never give up.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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