1. European Parliament views on the EU’s responsibilities around Fibromyalgia Prepared by Parliament Magazine Polling for the European Network of Fibromyalgia Associations. Email: contact@enfa-europe.eu

2. Introduction

3. Methodology Fieldwork Dates: 11th June 2012 – 17th July 2012 Date Collection Method: An online survey was sent to every current Member of the European Parliament (MEP); the survey was translated into English and French, and was also available to MEPs as a print version on request. A charity donation is made on behalf of each MEP who completed the survey to encourage participation. Population Sampled: All 754 MEPs. Sample Size: 91 (12% of the population) Data weighting: Data were weighted to reflect the current profile of the European Parliament. Data were weighted by Geographical Region and Political Group. Targets for the weighted data were derived from information publically available on the European Parliament’s official website.official website

4. Demographics These numbers are the total responses received, which we have weighted by party and region to reflect the political and geographical composition of the European Parliament. Total91Region Scandinavia & British Isles28 Political GroupWestern & Central Europe28 EPP28Mediterranean19 S&D20Eastern Europe16 ALDE17 Greens - EFA7Gender ECR6Male62 GUE-NGL5Female29 EFD4 Non-Inscrits5 Scandinavia & British Isles: Denmark, Finland, Sweden, Ireland, Sweden, United Kingdom. Western & Central Europe: Austria, Belgium, Czech Republic, France, Germany, Luxembourg, the Netherlands, Slovakia. Mediterranean: Cyprus, Greece, Italy, Malta, Spain, Portugal. Eastern Europe: Bulgaria, Estonia, Hungary, Latvia, Lithuania, Poland, Romania, Slovenia.

5. Summary (i) Overview Very few MEPs disagreed with the notion that the European Union has responsibilities relating to Fibromyalgia awareness and care. A majority of MEPs agreed or strongly agreed that the EU has a responsibility to increase awareness of fibromyalgia and a responsibility to educate EU citizens about fibromyalgia and the diagnosis procedure. A plurality of MEPs agreed or strongly agreed that the European Union has a responsibility to improve the quality of life for fibromyalgia sufferers and a responsibility to develop a strategy to ensure that fibromyalgia is recognised as a genuine and independent condition in member states. Around one in seven of MEPs responded “don’t know” or did not give an opinion on the statements, which may indicate that they lack awareness about Fibromyalgia.

6. Summary (ii) Political Groups MEPs from the Group of the Progressive Alliance of Socialists and Democrats (S&D) tended to agree more strongly that the European Union has responsibilities relating to Fibromyalgia awareness and care than deputies from the other political groups; MEPs from the Group of the Alliance of Liberals and Democrats for Europe (ALDE) were generally weaker in their agreement. Geographical Regions MEPs elected from the Mediterranean countries were generally stronger in their agreement that the European Union has responsibilities relating to Fibromyalgia awareness and care than deputies from the other regions; MEPs from Scandinavia & the British Isles tended to be weaker in their agreement. Gender Almost no Female MEPs disagreed that European Union has responsibilities relating to Fibromyalgia awareness and care.

7. Overview

8. Members of the European Parliament were asked to indicate whether they strongly disagreed, disagreed, neither agreed nor disagreed, agreed or strongly agreed with the following statements: “The European Union has a responsibility to improve the quality of life for fibromyalgia sufferers.” “The European Union has a responsibility to increase awareness of fibromyalgia.” “The European Union has a responsibility to educate EU citizens about fibromyalgia and the diagnosis procedure.” “The European Union has a responsibility to develop a strategy to ensure that fibromyalgia is recognised as a genuine and independent condition in member states.” The order in which the four statements appeared to MEPs was randomised to reduce bias.

9. Overview Very few MEPs disagreed with the notion that the European Union should be doing more on Fibromyalgia, although a significant minority of MEPs felt they were unable to offer an opinion.

10. Overview A majority of MEPs agreed that the EU has a responsibility to increase awareness of fibromyalgia and a responsibility to educate EU citizens about fibromyalgia and the diagnosis procedure. Relatively fewer deputies agreed that the EU has a responsibility to develop a strategy to ensure that fibromyalgia is recognised as a genuine and independent condition in member states. This is reflected in the higher number of MEPs responding “don’t know” to this question even if they are not disagreeing with it.

11. Political Groups

12. On average, MEPs from the Group of the Progressive Alliance of Socialists and Democrats (S&D) agreed more strongly with the statements that those of the other political groups. In contrast, deputies from the Group of the Alliance of Liberals and Democrats for Europe (ALDE) were, on average, generally weaker in their agreement with the statements. Strongly Disagree Strongly Agree By assigning a numerical value to each response in our scale, in this instance 1 for strongly disagree, 2 for disagree through to 5 for strongly agree, we can calculate a mean response to each statement. A mean close to 1 would indicate MEPs strongly disagreed with a statement and 5 would indicate strong agreement; 3 would represent a broadly neutral response.

13. Geographical Regions

14. Scandinavia & British Isles: Denmark, Finland, Sweden, Ireland, Sweden, United Kingdom. Western & Central Europe: Austria, Belgium, Czech Republic, France, Germany, Luxembourg, the Netherlands, Slovakia. Mediterranean: Cyprus, Greece, Italy, Malta, Spain, Portugal. Eastern Europe: Bulgaria, Estonia, Hungary, Latvia, Lithuania, Poland, Romania, Slovenia. On average, MEPs elected from the Mediterranean countries generally stronger in their agreement with the statements, although deputies from Eastern Europe were, generally strong in their agreement that the EU has a responsibility to increase awareness of fibromyalgia. MEPs from Scandinavia & the British Isles were, on average, weaker in their agreement that the EU has responsibilities with regards to Fibromyalgia relative to the other regions. Strongly Disagree Strongly Agree

15. Gender

16. “More women than men are afflicted with fibromyalgia” UK Fibromyalgia “The male:female ratio [of Fibromyalgia sufferers] is 1:9” Bartels EM et al. (2009)

17. Gender On average, Female MEPs agreed more strongly with the statements on Fibromyalgia than their Male counterparts. Strongly Agree Strongly Disagree

18. Gender Percentage of Gender who disagreed or strongly disagreed No female MEPs disagreed or strongly disagreed with three of the statements, and just 1 Female respondent strongly disagreed that the EU has a responsibility to develop a strategy to ensure that fibromyalgia is recognised as a genuine and independent condition in member states. Therefore, of the few deputies who disagreed that the EU has a responsibly in relation to Fibromyalgia the vast majority were Male.

19. Contacts Fabian Seshadri EU Data Research Manager +32 (0)2 741 8204 fabian.seshadri@dods.co.uk Dods (Group) PLC are a member of The British Polling Council and abide by its rules.The British Polling Council Dods (Group) PLC is registered in England Number 04267888 Tom Harris EU Data Research Assistant +32 (0)2 741 8204 tom.harris@dods.co.uk This presentation was prepared on behalf of the European Network of Fibromyalgia Associations. Email: contact@enfa-europe.eucontact@enfa-europe.eu