Understanding Myalgic Encephalomyelitis: Context and Lived Experiences



Many thanks to Pain BC for dedicating their most recent #PainWaves podcast to living with ME: “Understanding Myalgic Encephalomyelitis: Context and Lived Experiences.”

In the podcast, Pain BC’s Sim Jhutti interviews four thoughtful and knowledgeable patients – Serena, Kati, Meagan and Marcel - each living with differing levels of ME, and Elizabeth Sanchez, President / Program Manager of the ME/FM Society of BC.

Sim's excellent questions gives each speaker the opportunity to shed light on ME and what it is like to live with the disease.

Following is a list of the questions asked, along with their time code. (02:12) Interview with Elizabeth (02:49) Can you tell us a little about yourself, your background, and what led you to the ME/FM Society of BC? (04:54) Can you provide our listeners with an overview of what ME is for our listeners, from the point of view of the Society? (09:53) Is there any insight into why ME has developed in these individuals? (14:17) What are the common misconceptions that people living with ME experience, with respect to other people understanding the disease, or in the process of being diagnosed? (17:17) What resources for patients would you like to share? (19:32) Is there anything else you would like to share with listeners today? (24:22) INTERVIEW WITH PATIENTS (24:27) Background on each of the patients being interviewed: Serena, Meagan, Kati and Marcel (26:17) When did they first develop signs of ME, and what was their process of being diagnosed? (33:57) How has ME impacted each of their lives since receiving their diagnosis? (40:43) A lot of people have said that ME isn’t a real illness. Did they encounter this view during their diagnosis, and do they still encounter that now? (42:53) What symptoms do they experience, and how do they impact their daily lives? (49:37) Three of the four interviewed patients are too ill to work. Meagan talks about how she has been able to work as a massage therapist while living with ME. (51:07) To Meagan: Was your employer supportive of your taking on a part-time schedule? (51:57) To Meagan: Have you explored registered massage therapy for relief of some symptoms of ME? (53:19) To everyone: What treatment methods and management strategies have and haven’t worked for them? (63:04) To Serena and Kati: Could they share some of the hobbies they’ve been able to adapt and maintain in their daily lives? (64:41) To everyone: Do they have any additional thoughts they would like to share with the audience?

#2018 #mecfs #MyalgicEncephalomyelitismecfsdisa #chronicpain #ChronicFatigueSyndrome #PainBC #patientstories

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