Talking to Your Doctor: Navigating Healthcare for ME, FM, and Long-COVID
- ME|FM Society of BC
- May 22
- 3 min read
At the ME|FM Society of BC, we know first-hand how challenging it can be to get a diagnosis and receive appropriate care for ME, FM, and Long-COVID. Many people in British Columbia face long delays—often years—before being diagnosed, partly because these illnesses are complex and not always well understood by healthcare providers.
This post is designed to help you prepare for medical appointments, communicate effectively with your doctor, and advocate for the care you deserve.
Starting at the Beginning: Preparing for Your Appointment
Because ME, FM, and Long-COVID involve a wide range of symptoms that can fluctuate, it’s important to bring clear, organized information to your doctor. This helps them understand your experience and supports a more accurate diagnosis.
What to bring:
Symptom Diary: Track your symptoms daily or weekly, noting severity, duration, triggers, and how they affect your activities. Include key symptoms like profound fatigue, post-exertional malaise (PEM), widespread pain, cognitive difficulties (“brain fog”), sleep problems, and orthostatic intolerance.
Medical History: Prepare a summary of your medical history including any infections or physical traumas that preceded symptoms, past diagnoses, medications, and treatments tried.
Relevant Resources: Bring printed or digital copies of trusted information such as the Canadian Consensus Criteria for ME diagnosis, our Society's guides on ME and FM diagnoses and management, and the Clinical Care Guide for ME/CFS and Long Covid.
Support Person: If possible, bring a trusted family member or friend who can help communicate your concerns and take notes.
Key Questions to Ask Your Doctor
To make the most of your appointment, consider asking some of these important questions:
What tests will you do to rule out other conditions with similar symptoms?
How do you approach diagnosing ME, FM, or Long-COVID?
Are you familiar with the Canadian Consensus Criteria or the International Consensus Criteria for ME diagnosis?
How can we manage symptoms like post-exertional malaise, pain, and cognitive dysfunction?
What treatment options or referrals can you recommend?
Can you provide or refer me to a multidisciplinary care team or specialized clinic?
How can I pace my activities to avoid symptom flare-ups?
What support services or community resources are available in BC?
How often should I schedule follow-up appointments?
What red flags or worsening symptoms should prompt urgent care?
Understanding the Diagnostic Journey
ME is diagnosed primarily through clinical evaluation based on symptom patterns, such as:
A substantial reduction in activity lasting six months or more
Profound, unexplained fatigue not relieved by rest
Post-exertional malaise (PEM), where symptoms worsen after physical or mental exertion
Unrefreshing sleep
Cognitive impairments and/or orthostatic intolerance
Fibromyalgia diagnosis focuses on widespread musculoskeletal pain, fatigue, sleep disturbances, and cognitive issues. Both conditions often coexist and have overlapping symptoms.
Long-COVID shares many features with ME and FM, including fatigue, brain fog, and pain, often following a viral infection like COVID-19. Because these conditions are complex and symptoms overlap with other illnesses, diagnosis can take time. Bringing detailed symptom information and trusted resources helps your doctor understand your condition better.
How We Support You at the ME|FM Society of BC
As a BC-based society run by patients, caregivers, and families, we provide:
Educational materials on ME, FM, and Long-COVID diagnosis and management
Guidance on preparing for medical appointments and advocating for yourself
Access to peer support groups and community connections across BC
Resources on pacing, symptom management, and caregiver support
You can find detailed guides on diagnosis and treatment on our website:
Final Tips for Your Doctor Visits
Be patient but persistent—getting the right diagnosis and care can take time.
Keep a health journal to track symptoms and treatments.
Bring someone with you if you feel overwhelmed.
Don’t hesitate to share educational materials with your healthcare provider.
Remember, you are your best advocate.
If you need support or have questions about navigating healthcare in BC, please contact us; we’re here to help you every step of the way.
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