Europe: European Federation of Neurological Associations (EFNA)

The European ME Alliance has been a member organisation of the European Federation of Neurological Associations since 2015 (https://www.efna.net/emea/)

This survey by EFNA includes M.E. https://www.surveymonkey.com/r/EFNA-YS

It's open until 21st May and findings will be published on World Brain Day 2018 (July 22nd) and will be used to raise awareness among the public, health professionals and policy makers.

https://twitter.com/user/status/973300868383731713

 

I have not seen a thread yet on the survey so there it is. Hopefully this is the right forum.

The full report: https://www.efna.net/wp-content/uploads/2018/07/EFNAYoungPeopleSurvey.pdf.

The ME-specific report (link in full report is incorrect): https://www.efna.net/wp-content/uploads/2018/07/Data_ME_180704.pdf.

Here is a graphic summary:


Noticeable is that the results are skewed to Norway, with about 2/3 of response. Otherwise the results are not particularly surprising and highlight how important research funding and specialist services are to patient outcome and autonomy.

 

The EFNA (European Federation of Neurological Associations)

https://twitter.com/user/status/1030118543755563009


https://twitter.com/user/status/1022109432417853446



Maybe we could do with more of an ME 'presence' on this?

from their survey
"
Almost 80% of the respondents were female, with the majority of the responses coming from the
below disease areas:
•
Multiple Sclerosis
•
Myalgic Encephalomyelitis
•
Chronic Pain
•
Migraine "

Nice to see M.E. being included (as it should be).

 

EFNA Advocacy Awards 2018

winners announced here:
https://www.efna.net/efna-advocacy-awards-2018/

https://twitter.com/user/status/1067452994881560583



https://twitter.com/user/status/1068064778801811457


no ME presence(?)

 

https://www.efna.net/report-patient-advocacy-in-the-digital-world-efnas-young-peoples-workshop/

Facebook post from Invest in ME linking to the conference report above and highlighting the survey.


Apparently, "European ME Alliance (EMEA) is a member of EFNA"

 

Merged thread

An organisation worth knowing perhaps?

https://www.efna.net/

 

I unfortunatedly know little about this, but there is another Belgian ME advocate who has been following up on this for the European ME Alliance (which includes Invest in ME Research IiMER). You can follow her on twitter:
https://twitter.com/user/status/1008350065814065153

https://twitter.com/user/status/1002561105422704641

 

https://www.efna.net/brainlifegoals/

 

MEP Interest Group on Brain, Mind and Pain is an initiative of the EFNA

http://www.brainmindpain.eu/

 

https://www.efna.net/brainlifegoals-world-brain-day-events-to-take-place-in-four-european-cities/

 

“#BrainLifeGoals.......to have a specialist actually acknowledge that M.E. is a neurological condition and could they please catch up, encourage urgent biological research and learn how best to help us.”

 

https://www.efna.net/blggrantwinners/

 

https://www.efna.net/open-letter/

 

https://twitter.com/user/status/1239532512692637697

 

PURPOSE OF THE SURVEY

The European Federation of Neurological Associations (EFNA) represents 20 European and International associations across a wide variety of neurological disease areas, such as multiple sclerosis, epilepsy, migraine and ADHD.

The purpose of this survey is to identify factors contributing to stigma against people living with neurological disorders in order to develop strategies that will help to combat it.

Stigma and discrimination occur when people are treated unfairly because they are seen as being different from others. This survey will explore how you have been affected by stigma due to living with a neurological disorder.


PARTICIPATION IN THE SURVEY

This survey is open to anyone who is living with a neurological disorder and resides in Europe.

https://www.surveymonkey.com/r/EFNA-stigma

Interestingly, they list both Chronic Fatigue Syndrome and Myalgic Encephalomyelitis (ME/CFS).

 

https://www.efna.net/survey2020/

https://twitter.com/user/status/1285881034417016834

 

For the responses from those with ME only see this PDF file, https://www.efna.net/wp-content/uploads/2020/07/Data_ME.pdf

 

This is awful. It isn't just failing, it's massive widespread failure. Is anyone in the field of neurology bothered by this massively failing grade? It isn't just us, though we fare even worse, but 75% dissatisfaction is the kind of evaluation that should send any serious group of people running to fix things and push for massive reforms of the entire system.

Instead we see the continuous encroachment of psychosomatic nonsense, which very likely explains most of that dissatisfaction with outcomes. I would bet there is a linear relationship between FND nonsense and outcomes.

Because the question is really over whether medicine is concerned with disease or with people's health. The obsessive focus on disease with complete disregard for what actually happens to the patients is a predictable recipe for disaster.

I would be ashamed of being part of such a massive failure. But medicine generally scoffs at those concerns, they are not in the "customer service" business, i.e. not in the business of serving sick people. Even though it's common to cite "satisfaction" in papers when all other outcomes fail. What a totally FUBAR mess.

Bad incentives lead to bad outcomes. Please fix this, this is embarrassing and wrong.

 

Q44 In which area of your life has stigma been most problematic? (Please rank from 1 to 7 with the most problematic area first)

70% rated interaction with medical professionals as either 1 or 2.

Absolutely shameful. Complete shambolic failure. How can anyone in this field be proud of themselves given this? And all because of a silly astrology-level ideology. This is burn-it-all-to-the-ground-and-start-over level of failure.

 

Thought this was interesting because a lot of the participants were ME patients.

I highlighted some notable results in this Twitter thread:

https://twitter.com/user/status/1286315449815379969


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