Europe: European Federation of Neurological Associations (EFNA)

A

Awol

Senior Member (Voting Rights)
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.

 
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:
7SDWEMyHoijlNIOnagXf1kSlE06ap-YyAADNgKvmes0.png


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)






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 is focusing attention on young neurology patients during 2018. Our goal is to create a programme that assists young people in becoming advocates for their own disease areas.

The ‘Patient Advocacy in the Digital World’ workshop took place in Brussels from Monday, November 19 – Wednesday, November 21, as part of EFNA’s Training Initiatives for Neurology Advocates [TINA] programme. This workshop was open to 18 – 35 year olds from around Europe who are affected by brain disorder.

Day One – Monday, November 19, 2018
The day began with a presentation by Elizabeth Cunningham, EFNA Communications Manager, of results from the organisation’s recent survey of ‘Young Europeans with Neurological Conditions’.

The survey explored problems faced by this age group, as well as their feelings around levels of understanding of their disorder and their engagement in advocacy work or patient groups.

Between March 12th and May 15th 2018, 1368 responses to the survey were received from 39 countries. 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
The top concern cited by respondents was ‘access to medication/treatment’, followed closely by ‘isolation’ and ‘stigma’. This isolation and stigma could be attributed to the lack of public understanding of brain disorders.

You can read the complete survey report here: www.efna.net/efnayoungpeoplesurvey/
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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?
The European Federation of Neurological Associations (EFNA) brings together European umbrella organisations of neurological patient advocacy groups, to work with other associations in the field of neurology, including the European Academy of Neurology (EAN), in what has been termed a “Partnership for Progress“.
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https://www.efna.net/
 
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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:

 
The #BrainLifeGoals campaign will raise awareness of the impact of neurological diseases by exploring the dreams and aspirations of those living with a brain disorder.

Sharing #LifeGoals has become a popular trend in social media. #LifeGoals are the often frivolous wishes people have – for example to own a designer handbag, meet a particular pop star or drive a Maserati. In this campaign we will put a new spin on the #LifeGoals trend by instead sharing #BrainLifeGoals.

Those of us living with brain disorder do not necessarily have the luxury of frivolous dreams. Ours are more fundamentally important things – perhaps to walk without pain, to have access to employment, or to live a life free of stigma.

During Brain Awareness Week (March 11- 19) patient advocates are encouraged to participate in the campaign by sharing their own wishes alongside the #BrainLifeGoals hashtag.
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https://www.efna.net/brainlifegoals/
 
MEP Interest Group on Brain, Mind and Pain is an initiative of the EFNA
Who are we?
An initiative of the European Federation of Neurological Associations [EFNA] and Pain Alliance Europe [PAE], co-chaired by MEPs Marian Harkin, Jeroen Lenaers and Daciana Sârbu.

Our aim is to encourage research into and access to innovative treatments, promote prevention and self-management approaches, decrease stigma and work together to improve quality of life for people living with these disabling conditions.
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http://www.brainmindpain.eu/
 
To celebrate World Brain Day (July 22nd), the European Federation of Neurological Associations [EFNA] is hosting events in four European capitals – Brussels, Bucharest, Dublin and Warsaw!

The aim of these events is to hear what matters most to neurology patients in terms of their health outcomes – #BrainLifeGoals – and to discuss how this can be better integrated in the policy and decision-making at both the national and EU level.

Come along to hear patient testimonies, learn about the ongoing advocacy and awareness-raising work which aims to address the challenges outlined, and to question our elected representatives on how they can help.
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https://www.efna.net/brainlifegoals-world-brain-day-events-to-take-place-in-four-european-cities/
 
The #BrainLifeGoals campaign is an initiative of the European Federation of Neurological Associations [EFNA] that aims to raise awareness of the impact of neurological disorders.

In support of this campaign, EFNA will award grants, of €2,500 each, to projects that best reflect the theme of the campaign, raise awareness and improve understanding of neurological disorder. 28 applications were received from 13 different countries and a wide range of disease areas. The original intention was to award a grant to five projects, but we are pleased to announce that due to the high-level of interest and quality of applications, eight projects have been selected!

The chosen projects are:

  1. ‘Brain Conditions Cartoon Novel’ – Association of Patients with Neurodegenerative Conditions (APAN), Romania
  2. ‘Raising Awareness of Restless Legs Syndrome’ – European Alliance for Restless Leg Syndrome (EARLS), The Netherlands
  3. ‘Empowering People with Neurological Conditions to Realise their #BrainLifeGoals’ – Neurological Alliance of Ireland (NAI)
  4. ‘Cavernoma Society Raspberry Day’ – Cavernoma Society UK
  5. ‘Stroke Survivors’ #BrainLifeGoals’ – ‘Moždani udar’ – Stroke Association Serbia
  6. ‘Aspirations of Hope’ – European ME Alliance, Belgium
  7. ‘Stand Up Chemistry for children with learning difficulties’ – Pan-Hellenic Association of individuals with Attention Deficit/Hyperkinetic Disorder (ADHD Hellas), Greece
  8. ‘Step Up for Parkinson’s Performance’ – Step Up for Parkinson’s, Malta
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https://www.efna.net/blggrantwinners/
 
Today, the European Federation of Neurological Associations (EFNA), together with European Brain Council (EBC) and European Academy of Neurology (EAN), has sent an open letter to EU leaders, making a strong case for increased prioritisation of neurological/brain health in EU policies and calling for concrete measures to be undertaken to counteract the increasing burden of brain disorders.

We know from studies that at least 1 in 3 people will experience a brain disorder in their lifetime, with a total cost of brain ill-health in Europe alone estimated to be €800 billion each year – more than the cost of all major disease areas combined. The Global Burden of Disease Study Group found that neurological disorders formed the world’s largest cause of disability adjusted life years in 2015 and the second largest cause of global death, i.e. 16.8%. Brain disorders constitute the most prevalent disabling and burdensome diseases among NCDs in the European population. Evidence also shows that brain research has the highest potential in terms of return on investment, far exceeding the return in any other area. Therefore it is important that brain health receives far greater attention by the new European Commission and Parliament.
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https://www.efna.net/open-letter/
 
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).
 
In celebration of World Brain Day 2020, the European Federation of Neurological Associations (EFNA) has published the results of its recent survey on stigma and neurological disorder.

1373 responses to the survey were received from 37 countries. Responses came from a diverse range of neurological conditions, with the greatest numbers coming from the areas of Myalgic Encephalomyelitis (ME), dystonia, migraine or headache and chronic pain.

The report contains overall results, disease-specific results and a comparison of disease areas.
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https://www.efna.net/survey2020/

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

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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:



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
 
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