On November 24 and December 8, our son Paul and I shared information about a strange illness newly “discovered” by the medical community. Myalgic Encephalomyalitis/ Chronic Fatigue Syndrome (ME/CFS) been around for a few decades, but even with a couple of local mass epidemics, medical interest has been minimal at best. Two reasons account for this. 1. Medical tests on patients turn up no abnormalities, so doctors tell their patients, “There’s nothing wrong with you physically.” The clear implication is that referral for psychiatry is their next option. 2. Patients with ME/CFS are in no position to complain, agitate, or recruit other activists–they’re at home, too weak to move, some of them, with little or no energy to care for themselves.
Then, Jennifer Brea began a world-wide movement of patients through Skype, documented in her DVD Unrest, which landed on the short list (of 15) for an Oscar in the Documentary category. New interest in clinical research creates hope among sufferers. Here are some more lines of research turned up by Paul that provide hope.
1. Study of T-cell activation
Dr. Mark Davis, Director of the Stanford Institute for Immunology, Transplantation and Infection (ITI), has discovered that CFS patients have a number of antigens which correlate with the disease. An antigen is a chemical produced by our body to combat viruses, bacteria, fungus, and parasites. Because he wants to be 100% certain, he is at present unable to publish his results on the type of antigens. Dr. Davis is using new technologies described in the prestigious journal Nature.
2. Big Data
The Open Medicine Foundation (www.omf.org. https://www.facebook.com/OpenMedicineFoundation/) uses Big Data to provide family members of CFS patients as healthy controls. That way, researchers can control for heredity, environment, and diet, all of which will be similar to ill patients. Michael Snyder, PhD, Professor and Chair of Genetics and the Director of the Center of Genomics and Personalized Medicine, Stanford, investigates this issue in his lab.
3. The Salt Stressor
Using a nano-needle, researchers tested 21 blood samples. Only CFS patients and no healthy patients appear unable to handle the stress of adding salt to their blood. The nano-needle, a new technology, is identifying something unique to ME/CFS.
4. Shared Data
Dr. Ron Davis (not to be confused with Dr. Mark Davis, see picture), Director of the Stanford Genome Institute, sought to make research results available to the outside world, but ran into a serious roadblock. His data at the Stanford Chronic Fatigue Syndrome Research Center website (http://med.stanford.edu/sgtc) resided within the Stanford Genome Technology Center’s website. Excellent place to assure credibility, but, protective of its data, Stanford insisted on maintaining its firewall. That prevented non-Stanford people from accessing it. Also, Stanford wanted only researchers to have access. But Dr. Davis has worked out an agreement to house their data on an outside server where it should be accessible to researchers soon.
5. Giving Tuesday
Sponsored by the Open Medicine Foundation, patients raised $452,000 on “Giving Tuesday.” The Foundation provided an additional $1.2 million grant for Dr. Ron Davis and his research associates for their Stanford Collaborative Research Center.
These and other developments provide patients suffering with Chronic Fatigue Syndrome hope. For the past 30+ years our son Paul and his wife Juli have clung to the slim possibility of finding ways to improve their health. Now, in 2018, they have reason to hope. Please pray for these developments, that at least some of ME/CFS patient’s hopes will come to fruition in the year ahead.
[Source: Cori Johnson, www.healthrising.org/blog2017/12/21/urgency-ron-davis-chronic-fatigue-research-center/ Picture: The Atlantic. Davis, one of series of greatest innovators https://www.theatlantic.com/magazine/archive/2013/11/the-inventors/309534/]