ICanCME Research Network Secures Continued Funding for the Next 5 Years

October 18^th, 2024 (Montreal, Quebec) – Today, the ICanCME Research Network announced continued funding for the next five years to support Canadian research into Myalgic Encephalomyelitis (ME), through a $2 million catalyst network grant from the Canadian Institutes of Health Research Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA).

The funding will support multiple research projects at institutions across the country and will help advance the understanding, diagnosis, and treatment of ME, improving the lives of people living with this debilitating disease in Canada. It will also contribute to sustain and promote the development of the next generation of scientists in this field.

The Growing Need for ME Research

This funding comes at a crucial time. The need to study, understand, and treat ME is more urgent than ever, as at least half of those diagnosed with Long COVID meet the diagnostic criteria for ME. In 2023, Statistics Canada estimated that at least 3.5 million Canadian adults reported experiencing long-term symptoms following a COVID-19 infection, with over half (58.2%) still facing these challenges as of June 2023.

Climate change has also caused a major shift in the spread of infectious diseases in Canada creating a dangerous new era for the spread of mosquito and tick-borne diseases such as West Nile virus and Borrelia which can trigger ME.

Consequently, the need to address ME in Canada is urgent and growing exponentially.

Collaboration is at the Heart of ICanCME

ICanCME wants to take the time to thank each and every individual who has contributed to ICanCME over the past 5 years of operations, as well as those who contributed to our most recent grant application.

And lastly, ICanCME has benefited significantly from the leadership of our patient partners, as well as the support of the very active and engaged Canadian and global ME community.

Backgrounder

About ICanCME

The Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network, named by a patient partner and pronounced “I Can See M.E.,” is a national research network initially funded by a CIHR catalyst network grant in 2019.

The network aims to improve the health of people living with Myalgic Encephalomyelitis (ME) in Canada.

Since its inception, ICanCME has developed a robust governance structure, enhancing dialogue and research in key areas affecting ME patients.

What is Myalgic Encephalomyelitis (ME)?

Myalgic Encephalomyelitis (ME) is a severely debilitating, chronic, complex  multisystem disease rooted in dysfunctions that impair energy production, as well as the immune, endocrine, gastrointestinal, central nervous systems and more. Prior to the COVID-19 pandemic, this disease affected 17-24 million people worldwide and over 600,000 in Canada.

Despite its prevalence, there are currently no approved diagnostic biomarkers, and no Health Canada or Food and Drug Administration (FDA) approved treatments, or cures for ME. People living with ME face significant challenges, with up to 75% unable to work and an estimated 25% consistently housebound or bedbound.

Furthermore, people with ME experience fluctuating levels of severity, with 61% reporting being bedbound on their worst days. They live with a lower quality of life on average than those with multiple sclerosis, rheumatoid arthritis, multiple types of cancer, chronic kidney failure, or congestive heart failure.

Additionally, ME patients also commonly experience and are diagnosed with several common comorbidities including dysautonomia, postural orthostatic tachycardia syndrome (POTS), fibromyalgia, hEDS or EDS, mast cell activation syndrome (MCAS), gastroparesis, small-fiber neuropathy, and others.

ICanCME’s Collaborative Accomplishments

ICanCME has achieved significant milestones through collaboration and innovation, including:

• Research projects: Completion of three core advanced research projects with transdisciplinary teams.

• • Project 1 (lead PI Dr. Luis Nacul): The Contribution of Virus Infection to ME: A Comprehensive  Virology Study Using the BC Generations Project (BCGP) and the Canadian Partnership for  Tomorrow Project (CPTP) Cohorts
  • Project 2 (lead PI Dr. Dawei Li): Genomic and Transcriptomic Analyses of Endogenous  Retroviruses (ERVs) in ME
  • Project 3 (lead PI Dr. Amir Landi): Genome-wide transcriptomic profiling of peripheral blood  mononuclear cells to decode host inflammasome and immune alterations in ME pathogenesis.

• Trans-Network ME Research project: Development of a Trans-Network ME Research project aiming to both develop a sustainable research infrastructure for ME and implement the integration and standardization of databases and bio-banking  procedures.

• Collaborative teams: Creation of 10 collaborative research teams through the New Frontiers ME Discovery Grants regrouping over 100 members (researchers, clinicians and patient partners). Most of them were newcomers in the field of ME.

• Scholarships: Granting of 12 Scholarships through the ME Stars of Tomorrow Program for promising graduate students and postdoctoral fellows researching ME.

• Working groups: Creation of four active Working Groups, engaging over 70 members:

• Diagnosis, Clinical Assessment, Trial Development

• Epidemiology, Data Management & Study Design

• Trainee Development & Medical Education

• Vascular Instabilities & Sleep Disturbances

• Stakeholder Engagement and Collaboration: Engagement of research, clinical, trainees, patient partners, government and industry partners.

• Clinical-focused Education: Presentation of medical education about ME to more than 1000 clinicians.

• Research-focused Education: Distribution of research-focused education to over 300 clinical scientists and 14 research students. Also, co-created and co-hosted a webinar in partnership with CIHR-IMHA to IMHA researchers (5,900 views).

• Support for early career researchers: Support for early career investigators and established researchers, to assist them in accessing external grants for ME research resulting in the attainment of new research grants.

• Next-generation workforce development: Building the next-generation of research work force by facilitating the recruitment of new graduate students and postdoctoral fellows.

• Bilingual website: Established the ICanCME bilingual website (https://www.icancme.ca/)   
  • Offering tailored and quick access resources, meeting the needs of the research, clinical and patient partners.
  • Establishment of a virtual membership platform to encourage collaboration.

Key Quotes

“In the intricate symphony of ME, our task is to decipher the elusive notes—the whispers of cells, the hidden rhythms of this complex disease. Each patient’s story is a unique composition, and our role as researchers is to harmonize science with compassion. Remember, hope is our final refrain.”

— Dr. Alain Moreau, Principal Investigator and Director, ICanCME Research Network

“I’m delighted that this team of applicants exceeded the high bar that is CIHR peer-review. The team includes stars of patient leadership in research and I suspect that this contributed not only to the quality of the grant but also to the peer-reviewers’ vote of confidence. Authentic patient leadership accelerates research impact.”

— Dr. Karim Khan, Scientific Director, Institute of Musculoskeletal Health and Arthritis, Canadian Institutes of Health Research

For more information, visit ICanCME Research Network.

It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.

Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.

ME/CFS saps sufferers of energy and basic physical and cognitive functions, confining many to their homes or even their beds, often shutting down their working lives, social lives and family lives. The extreme seriousness of this condition, and the fact that there is neither a diagnostic test nor a validated treatment, places a special duty of rigour on doctors and researchers.

Some specialists say the current crisis of long COVID is related to the neglect of similar chronic illnesses, like ME/CFS.

Like other similar, neglected chronic illnesses, it defies a simplistic model of infectious disease in which a pathogen causes a predictable set of easily defined symptoms that alleviate when the bug is destroyed. It challenges our belief in our institutions, because truly contending with what long-haulers go through means acknowledging how poorly the health-care system treats chronically ill patients, how inaccessible social support is to them, and how many callous indignities they suffer at the hands of even those closest to them.

This article is part of a Health Affairs Forefront series titled “New Challenges for Health Care.” The series of five articles focuses on emerging issues that are facing decision-makers at provider organizations, insurers, public agencies, purchasers, and academic institutions in the health care sector. 

Believe it or not, our current pandemic of post-infectious disease—long COVID—isn’t unprecedented. It has a little-known older sibling. Those affected have simply been left to suffer.

Taking a lesson from people with chronic fatigue [syndrome/myalgic encephalomyelitis], many patients with long covid are scaling back daily activity to cope.

Almost three years into the pandemic, she has plenty of company on her quest for an answer. Millions of people around the world have developed Long COVID, or long-lasting symptoms that follow a case of COVID-19. Many of these symptoms look quite similar to the fatigue, cognitive decline, and crashes after exertion (formally known as post-exertional malaise, or PEM) observed among ME/CFS patients.