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ME/Long-COVID
Treatment & management
Introduction
There is, as yet, no cure or universal treatment for ME; there is only individual treatment for specific symptoms. However, there are some steps that you can take which may help:
Aggressive rest, especially in the early stages and during relapses, is the one therapy universally agreed upon as key in the management of ME.
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Work with your medical professional to obtain appropriate medical support for sleep disturbances, unmanageable pain, reactive depression, any nutritional and hormonal deficiencies, and/or to assist you with lifestyle changes needed to manage a chronic illness;
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Pacing, which means staying within your ‘energy envelope’ by managing your activities as best you can to avoid the push-crash cycle of relapsing symptoms.
Join a Myalgic Encephalomyelitis support group to relieve the isolation and loneliness which ME can create, and to learn more about the illness and how others cope with it.
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A healthy diet seems to help some patients. Since some people develop food sensitivities, it may be helpful to experiment with diet in consultation with your health care team to discover which are better tolerated and which should be avoided.
Above all, when you are feeling a bit better, avoid the temptation to catch up with unfinished tasks as this is likely to cause a relapse. Slowly build up your activity levels gradually and listen to your body when it tells you to rest. It is crucial to recognize your limits and not push beyond them.
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Videos on Symptoms and Management
The Bateman Horne Centre (USA) has developed a six-part educational video series describing symptoms, diagnosis and illness management tips for Myalgic Encephalomyelitis (ME) and Fibromyalgia.
Video 1:
Getting the Right Diagnosis
Video 2:
Activity Intolerance &
Post-Exertional Malaise
Video 4:
Chronic Widespread Pain
Video 5:
Cognitive Impairment
Video 6:
Orthostatic Intolerance
Tools for ME Management
ME/CFS Crash Survival Guidebook:
The Art of Living with ME/CFS.
This guidebook is designed for patients, for those allies supporting patients, and for medical providers.
Facets of ME: This is an educational series produced by ME Action (US) guiding patients and community through a number of ME related symptoms.
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If you are having surgery/anaesthesia
Recommendations for persons with Myalgic Encephalomyelitis /
Chronic Fatigue Syndrome (ME/CFS)
If you are considering physiotherapy
While this book's primary audience is physiotherapists, it includes comments from people with ME and case studies of how physiotherapy may assist different presentations of ME.
The book is available in print and ebook formats through online sellers such as Amazon. You can also ask your local bookstore to stock it from the publisher (Jessica Kingsley Publishers).
If you have no family doctor
Register with HealthLink BC’s Find a Doctor service, which helps connect people who are looking for a family doctor with one who is accepting new patients.
You can register online here or by calling 8-1-1.
With upcoming changes to the system, where there are wait lists for primary care givers, there is a chance that people calling in with complex chronic illnesses will be placed higher on wait lists.
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Contact your local Division of Family Practice, which is a group of family doctors who work together to improve primary care in their communities.
They may have programs or resources to help you find a family doctor or access other health services. You can find your local division here.
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You can also try “Find a Family Doctor” from the BC College of Family Physicians or “Find a Doctor” from Doctors of BC.
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Fully utilize support groups or organizations for people with ME, Long-COVID, other post-viral illnesses and their comorbidities, such as the ME|FM Society of BC.
As well as offering information and toolkits for self-care and illness-management through our “Living with ME/Long-COVID” email series and on our website, we also offer online support groups to help you learn, share ideas and experiences, and cope with your illness.
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If you have no family doctor or access to other healthcare workers, no specialist referral, and no access to the CCDP (due to geography, age or wait list, for example), you may feel you have to fall back on walk-in clinics or urgent and primary care centres (UPCCs) for diagnosis or care. However, these are unlikely to provide you with comprehensive care for your complex chronic illness. You may also have to wait for a long time to see a doctor or nurse at these places.
If you find yourself in this situation, there is no fast, easy way out. BC has a shortage of primary care doctors and finding a new one taking patients, especially one that is knowledgeable about post viral illnesses and is willing to take on patients with complex chronic illnesses, can be challenging.
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There are some steps you can take that might help improve your situation: