To date, the Canadian Institutes of Health have been slow to provide research funding, providing only $600,000 since 2009. in November 2016, Dr. Hani El-Gabalawy of the CIHR Institute of Musculoskeletal Health and Arthritis communicated CIHR’s intention to reverse years of underfunding:
With regards to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), CIHR – IMHA is committed to supporting high-calibre research that will contribute to the evidence base and develop capacity in this field. ME/CFS is a chronic, complex, multisystem illness. Preliminary research has linked it with disturbances in energy metabolism, immunology, brain and nervous system functioning, cardiovascular functioning, epigenetics, and the microbiome. More research is needed to determine the underlying pathology of ME/CFS, advance understandings of its relationship with overlapping conditions such as Fibromyalgia, and establish effective treatments. An estimated 800,000 Canadians are affected by ME/CFS, Fibromyalgia, or both. The National Institutes of Health (NIH) in the United States and the Stafford Fox Medical Research Foundation in Australia are ramping up investment in biomarker discovery, diagnostic testing, and patient subgrouping for ME/CFS. You will see in this newsletter that CIHR-IMHA recently launched a series of Catalyst Grants, with two dedicated to ME/CFS. These grants are intended to serve as seed money to support research activities that represent a first step towards the pursuit of more comprehensive funding opportunities. We are also seeking to engage in partnerships with other funding agencies to advance the ME/CFS research agenda. This is a fascinating area of research in which investigators from many disciplines have the potential to make groundbreaking contributions.
They have a long way to go to make up for years of neglect. In recent years CIHR grants have been so rare, we can list them here:
|Genotypic Influences on Epigenetic Variability in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis|
|Principal Investigator(s): Herrera Monroy, Santiago. University of Toronto||Value of grant: $135,000 for 2014-2017
|Characterization of a glycoprotein entry complex from a novel human retrovirus|
|Principal Investigator(s): Lee, Jeffrey E. University of Toronto||Value of grant: $300,000 for 2010|
|Attitudes toward Medicines’ Etiologies and Daily Stress|
|Principal Investigator(s): Sadowski, Adam S, University of Waterloo||Value of grant: $17,500, 2016|
|Impaired Skeletal Muscle Pyruvate Dehydrogenase Activity & Chronic Fatigue Syndrome|
|Principal Investigator(s): Ussher, John Edward R, University of Alberta||Value of Grant: $99,300 for one year. 2017|
Some interesting research emerging out of Canada is coming out of the University of Montreal. Alain Moreau was the only Canadian researcher invited to present at the Open Medicine Foundation Symposium at Stanford University: video of Dr. Moreau’s presentation. He employed a novel way to provide a stress on the body, using a massaging cuff. As patients with ME/CFS have a low activity tolerance and experience post-exertional malaise, stressing the body for research can cause a crash. This work is currently funded by a private foundation.
Dr. David Patrick is leading an interesting investigation with funding from the UK and the BC Centre for Disease Control.
- He led the study: Discovery in Chronic Fatigue Syndrome, Chronic Lyme Disease And Systemic Lupus Erythematosus, 2011 – 2017 at UBC with the Complex Chronic Disease Study, funded by the BCCDC Foundation for Population and Public Health. “We were looking very broadly using three broad-reaching discovery technologies, we actually considered it a hypothesis-generating study. In other words, we wanted to see if these new tools would give us new observations that might open up fresh lines of inquiry. ” – Dr. David Patrick
- He also leads a NIH-funded (US) project Exploring Host Gene Expression During Post-Exertional Symptom Flare in ME/CFS examining the possible causes and the physical processes responsible for post-exertional malaise.
- Currently, David Patrick is determining whether a chip-based Immunosignature Assay can identify patients with ME/CFS who will benefit from B Cell Depletion with Rituximab,
in which he will be using the assay on blinded blood samples to predict which patients in the Norwegian Rituximab Phase III trial, will respond to the treatment.
Researchers Wil deVega, Santiago Herrera, Suzanne Vernon and Patrick McGowan have found subsets of patients with defective T-cells, others with defective B-cells, and others with defective NK Cells. The University of Toronto reseachers are looking at how epigenetic changes translate into immune regulation and cellular metabolism in people with ME/CFS. They are finding changes in energy metabolism and oxidative stress, and a subset of people who are hyper-responsive to glucocorticoids. Corticoid steroids response would be very different for this subset of patients.
Are you a Canadian researcher investigating ME/CFS? Let us know! Email us at MECFSCanada@gmail.com