Thought this was interesting because a lot of the participants were ME patients.
I highlighted some notable results in this Twitter thread:
1) The European Federation of Neurological Associations (EFNA @EUneurology) conducted a survey on stigma and neurological disorders. 29% of the respondents (404 people in total) had ME, making it the largest illness group in the survey.
2) Some notable results:
More than half (54%) of ME patients said that their relationships within the workplace was negatively affected after disclosing their health issue
3) Some of the negative responses ME patients received from their manager include: “He laughed at the diagnosis”, “Told me to get a grip, did not believe in ME”, “and “She thought it was psychological and I needed a kick in the ass. She actually thought, she was being helpful.”
4) When asked what companies could do to improve working conditions for people with ME, the most common answers were working for home (home office), working less hours (part-time), a quieter working place and a flexible timetable that allow for more breaks.
5) 58% of ME respondents said that they agree or strongly agree with the statement: “My family can sometimes make me feel like I am exaggerating about my condition.”
6) To the question “If you have children, has anyone ever made you feel that you are not an adequate parent because of your health issue?” Half the ME respondents (52%) said yes.
7) 54% said they have ever been denied insurance or a mortgage on account of their neurological condition.
8) More than half (54%) said they have once delayed or avoided seeking medical advice because they felt embarrassed about their condition.
9) To the question: “How well do you feel medical professionals understand what it is like to live with your condition? 68% of ME respondents said “Not at all”.
10) 95% had ever felt that a medical professional did not believe the extent or severity of their symptoms and 95% said they had ever felt that they did not receive adequate or appropriate treatment because a medical professional did not take them seriously.
11) In contrast to some other neurological disorders ME patients indicated that stigma has been most problematic not in their interaction with friends, family, employment or partners, but in their interaction with medical professionals.
12) When asked about what they believed to be the root cause of stigma toward their illness, ME patients didn’t point so much to the name or symptoms of ME but to lack of understanding and myths about the condition.
13) Big thanks to EFNA for conducting the survey and all patients who participated.
The full EFNA survey results can be viewed here:
https://www.efna.net/wp-content/uploads/2020/07/SurveyReport2020.pdf
The results for ME patients can be viewed here:
https://www.efna.net/wp-content/uploads/2020/07/Data_ME.pdf
Comparisons with other illness groups is available in this document:
https://www.efna.net/wp-content/uploads/2020/07/Data_Comparison.pdf