Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID .

Experts Gather in Montreal to Develop International Research Agenda on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome – Cision PR Newswire


MONTREALApril 25, 2018 /PRNewswire/ – International experts will participate in the first-ever Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Canadian Collaborative Team Conference on May 3–5, 2018 at CHU Sainte-Justine.  The conference will bring together 250 researchers and healthcare professionals from various disciplines to develop an international research agenda for this debilitating disease, for which there is no known cause or effective treatment.

“I am extremely encouraged by the interest shown by leading researchers and clinicians, who recognize the importance of establishing research priorities that will advance our understanding of ME / CFS and identify new strategies for treating patients,” says Dr. Alain Moreau, Head, Viscogliosi Laboratory in Molecular Genetics of Musculoskeletal Diseases, CHU Sainte-Justine Research Center and Scientific Chair of the Conference.

The conference will focus on:

  • Methods to properly diagnose patients with ME / CFS;
  • The role of biomarkers in diagnosing ME / CFS;
  • Benefits of establishing a biobank to advance research;
  • Ways to improve clinical care for ME / CFS patients; and
  • How to initiate, support, sustain and advance research on ME / CFS.

“There is an urgent need to get to the bottom of this devastating disease. To do this, we need many people looking at it from different perspectives and sharing as many ideas as possible so that we are better able to understand ME / CFS at the molecular level,” explains Dr. Ronald Davis, Professor, Biochemistry and Genetics and Director, Stanford Genome Technology Center.

Speakers include Dr. Jonas Bergquist, Professor, Uppsala UniversityDr. Alison C. Bested, Clinical Director, Institute for Neuro-Immune Medicine at Nova Southeastern UniversityDr. Peter Rowe, Director, Children’s Center Chronic Fatigue Clinic, Johns Hopkins UniversityDr. Eleonor Stein, Clinical Assistant Professor, Department of Psychiatry, University of Calgary; and Dr. Derya Unutmaz, Professor, The Jackson Laboratory.

The conference is made possible through the support of the Canadian Institutes of Health Research and other partners.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
While severe chronic fatigue is one well-known symptom, ME / CFS affects a person’s cognitive and physical abilities and primarily strikes the neurological, endocrine and immune systems. A 2015 Statistics Canada unpublished Canadian Community Health Survey (CCHS) reports that just over 560,000 patients were diagnosed with ME / CFS, an increase of 37.6% from 2014.  In Quebec, tens of thousands of individuals are affected. ME / CFS is recognized by the World Health Organization.

To view the program, click here.

Original publication on Cision PR Newswire here.

Stay Informed

Be the first to hear our research news.

Subscribe Now.

No thanks

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

 

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

###

About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of five prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo