Dr. Juan Santiago presents his fascinating work on developing an ME/CFS bio-marker from observed Red Blood Cell Deformability.
Dr. Robert Phair – The genetics of the Metabolic Trap – 2019 Stanford ME/CFS Symposium
Dr. Robert Phair presents an update on his theories and findings around Metabolic Trap research.
Pivotal Moment for ME/CFS at the NIH?
One year to the day of the Report’s initiation, Stephen Roberds, the Chair of the ME/CFS Working Group and an NANDSC Council member, stepped up before the National Advisory Council (NANDSC), the Council through which all NINDS grants, initiatives and projects must pass. Before becoming the group’s chair, Roberds knew nothing about chronic fatigue syndrome (ME/CFS), but a year working on the report has convinced him it is a serious and neglected disease. Follow the source link below for details and a link to the report.
Source: Did a Pivotal Moment For ME/CFS Just Happen? – Health Rising
You Don’t Look Sick: Living with ME
A mom’s tale of her daily trials and tribulations while coping with ME. Her blog contains many useful tips for moms with ME.
Source: You Don’t Look Sick: living with myalgic encephalomyelitis (M.E.) | Metro News
The Harvard ME/CFS Collaboration
The 2019 inaugural Harvard ME/CFS Collaboration Symposium group photo.
Harvard today launched a new informative ME/CFS website. It is described as part of a new collaborative initiative at the Harvard Medical School Institutions committed to the higher understanding and discovery of new treatments for ME/CFS.
Source: The Harvard ME/CFS Collaboration at Harvard-Affiliated Hospitals
NEW GUIDELINES FOR DIAGNOSING AND TREATING ME/CFS
On March 15-16, leading ME/CFS expert clinicians from across the United States gathered in Salt Lake City for the second annual ME/CFS Expert Clinician Summit. The Open Medicine Foundation was in attendance and has made available a document drafted by the participants that should prove indispensable to clinicians and patients alike:
The basics of diagnosis and management of ME/CFS.
Source: NEW GUIDELINES FOR DIAGNOSING AND TREATING ME/CFS | Open Medicine Foundation
Kuma-san’s CFS Diary【This or That】by Yurari
Yukey has updated his blog with another great English translation of Yurari’s manga, “Kuma-san’s CFS Diary”
Source: ME Life is Like…
Third Annual Working Group Meeting on the Molecular Basis of ME/CFS @ Stanford
Director of Scientific and Medical Outreach, Jaime Seltzer of #MEAction, gave a talk on Wednesday during a session on “Big Data and ME/CFS” at Stanford University as part of the Third Annual Working Group Meeting on the Molecular Basis of ME/CFS sponsored by the Open Medicine Foundation.
On Saturday, September 7th, from 9 A.M. PDT the proceedings will be open to the public via live stream here.
For additional highlights of the conference proceedings please follow this twitter link.
Update: Day three ended with dinner for the scientists and the OMF at Ron Davis and Janet Dafoe’s home.
Source: Patient Registry is the Key to Achieving Big Data for M.E. – #MEAction
How Are Chronic Illness and Trauma Related?
Recent studies continue to point to inflammation as being a product of stress. This article explores connecting trauma and chronic illness. You will also find links to related articles.
Source: How Are Chronic Illness and Trauma Related? | The Mighty
Incline Village Revisited
Patients moved from all over the country to Incline Village, Nevada, for an experimental drug. Then the drug disappeared.
Source: A Town for People with Chronic-Fatigue Syndrome -The New Yorker