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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® Canada

Honoring ME/CFS Awareness Day: Exclusive from OMF Directors!

Today, May 12th, we observe International ME/CFS Awareness Day. It’s a day to recognize and stand in solidarity with the millions of individuals worldwide impacted by this debilitating condition. 

Exclusive from OMF Directors

What motivated you to focus your research efforts on ME/CFS?

 

Headshot of Christopher Armstrong, PhD

Christopher Armstrong, PhD
Director of the Melbourne ME/CFS Collaboration

My motivation to focus my research on ME/CFS stemmed from recognizing the significant disparity in how the condition is perceived and treated within the medical and broader community. I have always been deeply driven by a sense of fairness, and it was apparent to me that individuals suffering from ME/CFS were not receiving the fair treatment their condition demands. This inequity in care and acknowledgment spurred me to dedicate my efforts towards understanding and highlighting the biological underpinnings of ME/CFS.

Despite the clear suffering, there has been a prevailing notion that ME/CFS does not have a biological basis, which fueled both public and professional dismissal of the disease. This dismissal motivated me to prove the biological basis of the condition conclusively.

Moreover, the intrinsic complexity of ME/CFS as a research problem is inherently motivating. Tackling such a multifaceted issue offers profound intellectual rewards and stimulates innovative approaches to scientific inquiry. Having contributed to this growing evidence, I’ve noticed a growing interest and a more robust appetite for understanding ME/CFS among general practitioners and clinicians. This shift is encouraging and further fuels my commitment to this field and the challenge now lies in identifying effective methods to guide treatments that can truly make a difference in patients’ lives.

Headshot of Wenzong Xiao, PhDWenzong Xiao, PhD –
Co-Director of the ME/CFS Harvard Collaboration
Director of the Computational Research Center for Complex Diseases

Much of our motivation comes from patients we know and have communicated with and the patient researchers we have had the opportunity to collaborate with. Patients whom we had the opportunity to interact with helped us tremendously in understanding the disease and sharing with us their advice and ideas on our research.

Ronald W. Davis, PhD
Director of the ME/CFS Collaborative Research Center at Stanford University

I am totally focused on ME/CFS because my son (Whitney Dafoe) is very ill with this horrible disease.

What message of hope would you like to share with those living with ME/CFS and their caregivers during ME/CFS Awareness month?

Headshot of Alain Moreau. PhDAlain Moreau, PhD
Director of the ME/CFS Collaborative Research Center at the University of Montreal

Research into ME/CFS has made significant strides over the past decade, with a notable acceleration in the last five years. Today, multiple teams, including ours, have identified various alterations, particularly at the epigenetic level. These findings help us better grasp the clinical diversity observed among individuals with this challenging condition. They also open up new avenues for therapeutic solutions through the introduction of precision medicine.

These promising advances are not happening in isolation. The collaborative model established by the Open Medicine Foundation has played a pivotal role in advancing our understanding of ME/CFS and facilitating the emergence of new clinical trials. The search for a cure for ME/CFS is moving forward, but it’s not happening as quickly as we’d like for those dealing with this tough illness and their families. I want to encourage you all not to lose hope because when we all come together, the ME/CFS community gets stronger and more effective. Let’s unite our efforts, ensuring that no one gets left behind on this journey towards progress because together, we are unstoppable.

Headshot of Jonas Berquist, MS, PhDJonas Bergquist, MD, PhD
Director of the ME/CFS Collaboration at Uppsala University

I think that one of the most exciting and hope-giving facts we have now is the advancement in understanding the pathophysiological mechanisms underlying ME and other multiorgan complex postviral diseases. This progress has led us to the first well-designed, double-blinded, placebo-controlled clinical trial – LIFT trial. We are convinced that we will learn a lot from this trial and that this is the first of many more. Collecting facts is of high importance, but offering efficient treatments is even more pertinent.

David Systrom, MD, PhD
Co-Director of the ME/CFS Harvard Collaboration

Better things are coming. We are working hard to bring much needed relief to the millions of people around the world that are impacted by this disease. Together, we will find the answers we’re looking for.

A Message of Hope

A collage of the foundation team: Linda Tannenbaum, Kimberly Hicks, Jillian Payne, Lynn Bousquet, Lindsay Daguerressar, Danielle Meadows, Karolina Kutilek, Janis Maslyk & Rebecca Morse.

This collage of our foundation team, adorned in shades of blue, symbolizes our deep, personal connection to the cause—many of us are also patients, caregivers, or individuals with loved ones battling ME/CFS and related diseases. Our commitment to finding a cure is more than professional; it’s personal. We share in the struggles, the hopes, and the relentless pursuit of a brighter, healthier future. Together, we are a formidable force against ME/CFS, driven by love, compassion, and the unwavering belief that together, we can conquer this.

We ask you to join us in our mission. Please, if you can, donate to accelerate research for a cure in honor of International ME/CFS Awareness Day. Together, we can create a healthier future.