FAQs (for patients/people living with ME and FM)

1. I'm looking for a doctor who knows about ME and/or FM.  Where do I find one?

 

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In Canada, Myalgic Encephalomyelitis (ME) and Fibromyalgia (FM) are not included in a medical specialty, as oncology is for cancer. In BC, there are not many doctors who specifically see people with ME/FM regularly and the few who do have a long wait list to be seen. 

 

The Society’s website has collected high quality information to support your current primary care provider, like your family doctor, to begin learning about ME and FM, including diagnosis and symptom support information. Please refer your primary care provider to us: Introduction and diagnosis | MEFM SOCIETY OF BC  and Symptom management and referral | MEFM SOCIETY OF BC.
 

The Complex Chronic Disease Program (CCDP) offers physician to physician consultations to support your current health care provider, regardless of whether you have been referred, enrolled or previously attended the program. This could be a helpful opportunity for your health care provider to be supported in making a diagnosis and/or discussing a management plan for your symptoms. This consult can be requested by your doctor: http://www.bcwomens.ca/health-professionals/refer-a-patient/complex-chronic-diseases 

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Some people with ME/FM, without a regular doctor, have shared that going to the same walk-in clinic each time can create some continuity of care and record keeping. 

 

Telus Health, formerly Babylon, is a telemedicine service providing telehealth appointments with physicians, mental health professional and dieticians: TELUS Health MyCare | TELUS. This may support you in receiving care while being home or bed bound. 

 

If you need immediate medical attention, please call 911 and/or go to your closest emergency room. 

Doctor taking blood pressure of older patient

2. I don’t have a family doctor. What should I do?

 

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Finding a family doctor is challenging for British Columbians. The ME/FM Society of BC does not have access to any additional physician lists beyond what is publicly available.

 

To find a family doctor, please visit: 

Find a Family Doctor - BCCFP

Find a Doctor | Doctors of BC

3. My doctor doesn’t believe me or my symptoms. What do I do? 

 

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ME and its symptoms are very real, but it is not often taught in medical school or within continuing education opportunities so it may be that your physician is less familiar with the condition. Providing your physician with a succinct handout on the topic could be helpful. 

 

We have collected various educational resources to support health care providers: For health care providers | MEFM SOCIETY OF BC 

 

This Clinical Coalition Handout lists hallmark features, as well as differential diagnoses for your health care professional to consider: MECFS Clinician Coalition Diagnosis and Treatment Handout V2.pdf

 

Using a self-rating scale is also a nice way to communicate the level of your functioning and might be a helpful way for your doctor to understand what you have been experiencing. For example, if you were able to give them this rating scale and say “I used to be a 25 but now I’m a 35”, it might be an easier way for them to understand the level to which you are affected. It also helps them to be able to follow your progress by having a baseline of your functioning.  

 

http://cfsselfhelp.org/files/rating_scale.pdf

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4. Who can help determine a diagnosis for ME?

 

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The most accepted and used diagnostic criteria for ME in Canada is the Canadian Consensus Criteria. A number of supportive resources and documents have been collected for Health Care Providers: Introduction and diagnosis | MEFM SOCIETY OF BC.

 

There is not a medical specialty for ME in Canada and ME is not routinely part of medical education programs. However, general practitioners, nurse practitioners and/or other medical specialists (e.g., Internal Medicine), can use the diagnostic criteria to support an ME diagnosis. 

 

Any BC health care provider can also request a 10 min consultation with a physician from the BC Complex Chronic Diseases Program (CCDP) through Referrals - Complex Chronic Diseases Program (bcwomens.ca). Patients do not have to be enrolled, waitlisted or alumni to have their primary health care provider seek access to this consultation. 

5. Is there a cure for ME? 

 

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Currently there is no cure for ME. We understand it is hard to accept that there are currently no established, evidence-based, clinical guidelines for recovery. Treatments claiming recovery should be considered with caution.

Patient with Healthcare Nurse
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6. What treatments are available for ME?

 

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There are currently no scientifically proven pharmacological treatments for ME. However, pacing is an important aspect of managing ME and its symptoms. Working with a healthcare professional about screening/managing common comorbidities (e.g, POTS, MCAS) and common symptoms (e.g, pain, sleep) may also be helpful. Please visit our health care provider information for additional support: For health care providers | MEFM SOCIETY OF BC 

 

Special note: Treatments and programs that have foundations in psychology, or those treatments that aim to teach people with ME to think differently, notably Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), do not have scientific clinical evidence for effective treatment of ME. The recently updated NICE guidelines specifically address CBT and GET. GET can be harmful by pushing patients outside their energy envelope. 

 

Considering your mental health and wellness needs in adjusting to a diagnosis and living with chronic illness is an important aspect of your overall care. However, you cannot rewire, retrain or think your way out of ME. ME is a physical disease.   

 

Please consider these words of caution: Alternative treatment in general - Fraudlisting

7. What is pacing and how do I do it? 

 

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Pacing is a self-management strategy that people with ME can use to prevent or lessen the symptoms of post-exertional malaise (PEM). Pacing is important because by listening to your body and spreading tasks or activities out, you can help to limit the amount of PEM you experience. 

 

Since PEM can manifest 24-48 hours after physical or cognitive exertion and can last for days or weeks, the goal of pacing is to balance activity with recovery so that you can minimize having a frustrating cycle of pushing and crashing. Planning ahead so that you reduce the crashes can also help you to include more meaningful activities in your life.

 

Health care providers should already be familiar with pacing for other conditions (like multiple sclerosis or head injuries) so it is something they should be able to help you with. Occupational therapists are particularly used to this concept since the people they treat often have to adapt to a new way of life when they are experiencing health issues. PEM often doesn’t come on until later so it is important that you listen to your recent or previous experiences and plan accordingly.  

 

Please visit our pacing resources: Pacing resources | MEFM SOCIETY OF BC

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8. I have to complete disability forms. How do I start? 

 

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When completing the forms and describing your illness experience, it is often recommended that you describe your “worst day”. ME and FM are fluctuating illnesses, with bad days and better days. Include details of the accommodations you use at home to support activities of daily living. For example, you cannot cook three days in a row, or you use pre-made meals or pre-cut produce; you use a shower chair or cannot stand to shower, only bath or sink-wash.

 

There are some agencies that can help you with completing the forms or navigating the process, such as:  

Disability Alliance BC https://disabilityalliancebc.org/category/publications/help-sheets/)

- https://www.povnet.org/find-an-advocate

Document with Pen

Also, for those already with CPP-D and/or Community Living BC, there is a simplified process for PWD: https://www2.gov.bc.ca/gov/content/family-social-supports/services-for-people-with-disabilities/disability-assistance)

 

The ME|FM Society of BC does not have any specific partnership with these, or any other, organizations, and this is not an exhaustive list. If you have had a positive experience with another agency, please let us know: support@mefm.bc.ca  

9. How do I explain ME to family members?

 

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ME is a complex multi-system disease that affects millions of people worldwide but is often undiagnosed or misdiagnosed. It is common for people with ME to feel that their friends and family don’t understand this illness, and the lived experience of it. 

 

Visit the About ME section of our website for more helpful information on the disease, its symptoms and treatments. You will also find links to other resources. People with ME also find these videos helpful to explain ME to their friends and family: 

 

  • UNREST (Full length documentary, available on Netflix, in local libraries, on YouTube)

  • What is ME/CFS? (Bateman Horne Center, 5min47sec)

  • (Open Medicine Foundation, 2min7sec)What is ME/CFS?


We also host a social support group for family members and friends. This could be an opportunity for your friends, family, neighbors, etc to meet others and learn more about supporting people with ME and FM. For more information or to register, go to Support groups | MEFM SOCIETY OF BC 

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10. What type of home support is available for people with ME and FM?

 

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Consider talking to your primary health care provider about your needs for support at home and what services are available in your area.  

Caregiver with Patient

Some people with ME and FM find having a home visit by an occupational therapist helpful to work through mobility and safety issues. 

 

Home care and cleaning services may also support living at home but may require additional education and advocacy to be explicit with your needs (e.g., time of day, length of stay, chemical sensitivities, and noise). 

 

Handi-dart and other driving services may support your transportation needs to appointments. 

 

Asking friends and family may be emotionally hard to do but may be met with willingness and support to help.

​11. How can I connect with others living with ME and FM?

 

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ME and FM can be a very isolating experience. Some people with ME and FM find it helpful to connect with other people living the same experience. 

 

The ME|FM Society of BC hosts social support groups for people living with ME and FM, and for their friends and family to meet others in similar situations. You can learn more about this here: Support groups | MEFM SOCIETY OF BC

 

The ME|FM Society of BC also operates a phone line, for one-on-one conversations with fellow people living with ME and FM. These are volunteers answering the calls and we aim to call back within 48 hours. We do not have the capacity for 24/7 or business hour call center operations or mental health intervention services. For individual support: call 604-878-7707 or (BC Toll Free) 1-888-353-6322 or email support@mefm.bc.ca. For more information, please visit: Support | MEFM SOCIETY OF BC

 

There are also many discussion groups and forums online. For a well moderated, Canadian group, we suggest: ME & CFS Canada (Myalgic Encephalomyelitis & Chronic Fatigue Syndrome) | Facebook

 

Finding mental health support from a counselor or psychologist can help you process the feelings of isolation and help with coping. It is always hard to go through things others may not understand. It is important to find ways to help improve your coping skills as you adapt to your current situation. Counselors may not have experience/knowledge of ME/FM but look for counselors who focus their practice on grief/coping with significant health changes. Your mental health professional can also learn more about ME/FM from our health care professionals page: For health care providers | MEFM SOCIETY OF BC 

 

Also, finding quiet hobbies such as art, crafts or online classes or games that allow you to be flexible, can also help alleviate feelings of isolation and help you connect with others.

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FAQs reviewed and up to date as of March 2022. These FAQs will be reviewed periodically and updated accordingly. 

 

Do you have more questions? Please email us at support@mefm.bc.ca.