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NEW Made in Alberta Clinical Practice Guidelines for ME/CFS

me/cfs Apr 01, 2016

Clinical Practice Guidelines (CPG) are documents which take into account all of the published, peer reviewed medical literature and make recommendations based on that evidence.

Evidence based guidelines exist in fields like treatment of heart disease where multiple large studies of the same treatment can be compared statistically. In cases where the evidence isn’t conclusive many guidelines end up recommending nothing. While statistically accurate, this approach is unhelpful for clinicians who desperately need guidance while waiting for stronger evidence to accumulate.

An evidence informed guideline fills this gap by including expert opinion/consensus where needed. As long as this process is transparent (doesn’t imply things are “proven” when they are not) evidence informed guidelines provide a valuable source of information to clinicians. This new guideline is evidence informed combining a thorough review of the literature with expert opinion derived in large part from the IACFS/ME 2014 Primer for Clinicians which built on the 2003 Canadian Consensus Guidelines.

This CPG was drafted by an expert committee of Towards Optimal Practice (TOP). TOP is a collaboration of the College of Physicians and Surgeons of Alberta and the Alberta Medical Association. Toward Optimized Practice (TOP) helps Alberta physicians and the teams with whom they work implement evidence-based practices to enhance the care of their patients

Patient advocate Linda MacDonald approached TOP over 3 years ago with the request to draft a CPG for ME/CFS. Thank you Linda for your creative idea which got this all started. TOP agreed that there was a gap in knowledge and the process began. I served as the content expert on the committee. We also had one scientist/researcher, one patient advocate, one psychologist and 3 family physicians on the committee. All the committee members have extensive knowledge of and experience with individuals with ME/CFS. We had access to a professional librarian to access all of the literature needed and a professional guidelines facilitator to draft the guidelines. It was a positive experience with everyone agreeing on the importance of the task and having an understanding of the unmet needs of individuals with ME/CFS. I am very proud of the guidelines.

My hope is that these guidelines will be promoted and used across jurisdictions in Canada and abroad. All family physicians in Alberta were sent an email about these guidelines. Please discuss them with your doctor.

Identification and symptom management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)

TOP’s new Clinical Practice Guideline (CPG) responds to the need for greater awareness that Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a complex, chronic, debilitating physical condition that can be identified and successfully managed in the primary care setting.

The CPG aims to equip clinicians with the necessary knowledge and tools to identify and provide symptom management while empowering the patient by acknowledging the legitimacy of the condition and respecting the patient’s lived experience.

To download the New Clinical Practice Guidelines for ME/CFS click here.

To download the TOP ME/CFS Summary of the Clinical Practice Guideline (January 2016) click here.

Author: Eleanor (Ellie) Stein MD FRCP(C)

I am a psychiatrist with a small private practice in Calgary and am an assistant clinical professor in the faculty of medicine at the University of Calgary. Since 2000, I have worked with over 1000 patients, all with ME/CFS, FM and ES. My passion for this field comes from my own struggle with these diseases, my desire to improve my health and then pass on what I learn. My goal is for every patient in Canada to have access to respectful, effective health care within the publicly funded system. 


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