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

Reflections on the IiME Conference Week 2019

Written by Christopher Armstrong, PhD, OMF Science Liaison

This was possibly the largest ME / CFS meeting I had ever been to, which indicates how fast the research field is growing. There were 4 days of talks from before 9am until after 6pm every day and the talks were kept to around 20 minutes each.
It began on Tuesday the 28th of May with the young investigator conference coined

“Thinking the Future”, an initiative started at the Invest in ME conference last year and elaborated upon at the NIH meeting just a couple of months ago. I was pleasantly surprised by the number of PhD students and the depth of their presentations. We discussed the paths to take for a future career in ME / CFS, the methods we could use to maintain momentum and how to keep the young investigators encouraged to move forward. Many young investigators commented that patient engagement was a strong source of positive experiences for them, so I would like to openly acknowledge and thank those patients that contact researchers the world over. The mutual benefits of researcher-patient interaction are truly remarkable.

The colloquium was spanned over two days, Wednesday and Thursday. Researchers from around the world presented their most recent findings. Each talk had a unique perspective and many were quite thought-provoking. The audience was very engaged, with very few empty seats and plenty of questions. Every session seemed to run overtime, which was a good indication of the amount of work there was to discuss. Each of the breaks and dinners were filled with excited chatter and possibilities. This colloquium has a particularly relaxed feel which provides a comfortable environment for collaboration building between scientists and clinicians.

The final day was primarily for the patients, the talks provided insight to the larger project being undertaken in the field and provided evidence that progress is happening all around.

Left to right: Dr. Ron Davis; Linda Tannenbaum; Dr. Chris Armstrong & Linda; Ron Davis, Maureen Hanson & Dr. Ronald Tompkins

The day began with a rallying cry from Dr Ian Gibson leading into two presentations from the major government research entities from the United States, the CDC and NIH represented, by Dr Elizabeth Unger and Vicky Whittemore respectively.

Over the day there were several talks by OMF Scientific Advisory Board (SAB) members, including Dr. Maureen Hanson discussing the “Immune Dysregulation in ME / CFS” and Dr. Øystein Fluge updating us on “Rituximab in ME / CFS: a randomized, double-blind and placebo-controlled trial”.

SAB Director and leader of the Collaborative Research Center at Stanford, Dr. Ron Davis, outlined an array of projects that are “Establishing new mechanistic and diagnostic paradigms for ME / CFS”. He began by detailing the main outcomes from the Severely ill Patients Study before launching into discussing the various diagnostic technology being developed and finally ending with the metabolic trap hypothesis.

SAB and co-leader of the Collaborative Research Activities at Harvard, Dr. Ron Tompkins, previewed the “Harvard Plans for Clinical Research into ME / CFS”. He highlighted the muscle biopsy study to characterize post-muscular stress in ME / CFS, this is in collaboration with Nottingham University (UK). Dr. Tompkins also gave an overview of the clinical workflow underway at Harvard, bringing several silos of research together to form a collaborative unit. One such researcher working within this collaboration is Dr. Michael VanElzakker, he discussed his brain imaging work.

During the breaks, many patients, carers and scientists surrounded the table that OMF had set up. They discussed their thoughts on the research being presented and wanted to know more about future directions. It was wonderful to interact with the broader community in an open way. Invest in ME once again delivered a tremendous platform for the sharing of research data and ideas. The researchers all felt very inspired and energized by these several days in London.

Left to right back row: Wenzhong Xiao, Daniel Peterson; Front row: Jonas Bergquist, Linda Tannenbaum, Ron Davis, Øystein Fluge, Maureen Hanson, Ron Tompkins, Chris Armstrong


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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.


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 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.


Heather Ah San

Development and Communications Manager