At our October 30 screening of Unrest with UBC Medical and Nursing students, we surveyed them on their knowledge and experience with ME/CFS. Here are the survey results.
What are your previous experiences with ME? Have you met any ME patients during family practice visits or in your personal life?
I've never met anyone with this condition
Saw this film at DOXA. No personal experience
Not very much experience. I know one person with fibromyalgia and have heard a bit about it but not much.
No, I had never heard of it before I saw the advertisement for this screening.
Have no previous experiences with ME
I have not personally met anyone with ME but my classmate has a Health Mentor with ME.
I did not know about ME> I have not met ME patients, until tonight.
My best friend has ME - since 2009
I haven't had many if any previous experience with ME
Not that I know of. I had not heard of it
Close friend with a parent, diagnosed 30+ years ago
Good friend with ME
No experience with ME at all
I know someone personally with ME.
Very limited. I have met one person with ME during undergrad. That was the first I had heard of it.
What is the most surprising thing you learnt tonight?
How widespread the condition is
I saw the poster showing 560,000 Canadians have ME but the movie really helped demonstrate how devastating it is.
Existence of Complex Chronic Diseases clinic
The prevalence - 2 x more than MS!!
How severe + disabling it can be
How prevalent and extreme it is! 17 million people!
How much ME can change your life and how people ignore it because it's an invisible disease.
I was shocked to see how severe this conditions impacts people and how little health care professionals know about this condition.
The prevalence of ME and all the symptoms that ME comes with
The severity possible
The prevalence? Yes so many deny it exists.
This is super prevalent but I hear so little about it
Denmark case = patient removed from home was horrifying + traumatizing. Also the gender-relation in care shocked and angered me.
Exercise is the worst advice for this conditions
I was not aware of the severity and how wide the spectrum is.
The severity of the illness, and its prevalence.
How differently patients can present with symptoms and now resilient the patients are in the face of ME.
That there doesn't really seem to be any definitive treatment.
What are the most important questions that you have about ME after watching this film?
What are the treatments?
Current treatment. Role of diagnostic imaging vs. immune function lab diagnostics
How can we promote research?
How do most patients w/ME live? At home? with family? Long term care?
How to diagnose it? How to get access to resources to help ME patients in the future.
What is the current symptom management plan for ME, and why did the anti-viral drug that Jennifer started taking stop working?
Why isn't there more research on this topic???
Do you have any idea or guess as to the cause of ME?
I would still like to learn more about the basics of ME
the different treatments impatiens have tried and failed / had improvements with
Prevalent treatments / therapies that have seen success. What are the diagnostics for ME?
Why does this happen?
Has any progress been made since the film? Complex Chfonis Disease Program in BC = similar in other provinces/countries?
How can we manage symptoms until more research provides answers?
Do most cases plateau or continue to worsen?
How to support patients with ME. Current status of research.
What more can be done to help ME patients right now?
How can we, as future physicians, provide better support?
Would you like to see ME included in your educational curriculum?
Yes - based on prevalence alone it should be included
Yes (UBC Med)
Yes, I believe it is important to learn about ME/CFS as it is difficult to diagnose and the current toll boxes we learn are insufficient to treat patients.
Yes - nursing
How to refer, what it is, patient story like tonight, signs, symptoms, and commonly mistaken conditions.
Not in the medical field, but would like to see medical students exposed.
Would you be interested in participating in an educational seminar with an ME knowledgeable physician and patients?
Yes, if the timing is appropriate for students.
If I were in the medical field I would.
Let us know if you have any other comments:
It was so valuable to hear the patient experiences afterward.
Thanks for the session.
Enjoyed the film + session.
Thank you for screening this!
The screening has been eye-opening. Thank you.
Thank you for holding this.
Amazing film, so valuable to learn about as a nursing student.
Thank you so much for teaching me about M.E.!