Survey Responses from UBC #TIMEFORUNREST Screening

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

• Personal life

• Saw this film at DOXA. No personal experience

• No 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

• Zero

• 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 (8)

• Yes! (4)

• 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 (13)

• Perhaps

• Yes!

• Yes, if the timing is appropriate for students.

• Sure!

• 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.!

Join us!

Help us to hold a #TimeForUnrest event at every Med school and Nursing school in the province! Email us.

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