Portugal­

 

Myos -Associação Nacional Contra a Fibromialgia e Síndrome de Fadiga Crónica

Street: Avenida Santos Dumont, nr 67 - 1 1050 - 203 Lisboa
District: Lisbon
Country: Portugal
Tel: +351 217973294
E-Mails: sede@myos.pt secretariado@myos.pt

Facebook:   www.facebook.com/myos.portugal   Website: www.myos.com.pt

 

Board members:

 

President: Christina Fidalgo Sequeira
Vice President: António Sancho Amaral
Secretary: Maria Candida Abranches Monteiro
Treasurer: Florinda da Conceição  Salqueiro
Member: Maria Carolina Lopez
Member:
Others:
 

History:

Myos was founded in 2002 when four patients, who had met at a support group, felt the need to create an official institution to represent FM patients and their real needs in Portugal. Our aim was to raise awareness and provide information to the community in general, as well as to provide educational support for patients and their families. Myos was formally launched in Lisbon, on May, 12, 2003, during an event broadcast by the national media. Two national public figures Maria Elisa, a well known TV journalist, and Margarida Barroso, wife of former Portuguese Prime Minister Mr. Jos? Manuel Dur?o Barroso, gave us their official support. Both ladies are fibromyalgia sufferers themselves. Our main goal, since the beginning, was to improve the quality of life of patients and their families through education. One way of achieving it was to make information available all over the country, through the creation of a national network of support groups and regional delegations, targeted to all Portuguese patients.

Objectives

Myos is a non-profit organization, whose mission is to develop and execute projects dedicated to improving the quality of life of people with FMS and CFS. It was created to represent patients' needs and to defend their rights, as well as to develop knowledge among patients, health professionals and the community in general. We have the following objectives:

  • Provide information and education to patients and their families;
  • Represent patients and defend their interests before social structures, private and public institutions, including the Government, Policy Makers, the Health Ministry and the Scientific Community;
  • Raise awareness among health professionals so that these become able to develop a more effective and personalized work with these patients;
  • Develop and distribute information on FMS and CFS so that these conditions can be demystified before the society, consolidating the respect for patients;
  • Promote occupational therapy options and leisure events, contributing to occupying patients with satisfactory activities, stimulating them not to focus on their illness limitations;
  • Enlarge the national network of support groups, according to the needs in different regions, to be closer to those who need our support;
  • Establishing protocols with private clinics, medical offices, hospitals, swimming pools, gymnasiums, alternative (non conventional) medical treatments and complementary therapies, so that our members may access these services at a lower cost;
  • To raise funds, in order to set up our projects.

 

Achievements, Activities and Events:

Before 2008

 

Activity name Objectives Date Venue
Presentation of Myos, creating a scientific advisory board, meetings with minister of health To Inform and raise public awareness among national citizens. Goals achieved thanks to the involvement of Maria Elisa, TV journalist and national public figure, who was the first President of Myos, and Margarida Barroso 2003 Lisbon, Portugal
Launching website, conception of Myos bulletin, starting of individual assistance. Give information and support to patients, health care providers and relatives 2004 Lisbon, Oporto, Portugal.
Meetings with minister of health, collaboration with platform for the dialogue of health, meeting former president of Portugal. To raise awareness on several public health issues, to provide serious information and education of the Portuguese citizens and health care takers. 2005 Lisbon, Portugal
Presentation of book and DVD, "Fibromyalgia in motion - a daily exercise practice" Collaboration with FIADC, protocol with the university of Lisbon Showing importance of motion to patients, improve political influence, improve know how of students and professors. 2006 Lisbon,Leiria, Oporto, Portugal
Collaborate and participate in SPR, information for special target groups, visiting several international conferences. To raise more awareness, to provide the latest information to the individual patients. 2007 Portugal, France, The Netherlands, USA, Spain.
Starting up support groups, Annual national congress on fibromyalgia, participate in scientific events, activities for patients, support academic projects, participate in training sessions, workshops, 12th of May activities. To raise more awareness, understanding and support for the patients. Get the objectives for the organization Annual All over Portuga

In 2008

 

Activity name Objectives Date Venue
1st European Fibromyalgia Day 2008 Raising awareness at the European Level 7th May 08 Brussels, Belgium
World Awareness day of FM Interviews broadcasted on public and private radio and TV stations, following press releases. Publication of texts in national and local newspapers and magazines: Upgrading on FM and CFS, announcement of the global survey and the ENFA round table meeting at the EP 12th May 08 All over the country
Conference and Press Event during EULAR Congress to announce the final results of the global survey on FM Raising Awareness by the European Media 12th June 08 Paris, France
Participation in the SPR National Awareness & Education Campaign & Exhibition: "Saber que faz mover". Production of informative materials: brochure, poster and video To provide information on FM, within the ambit of a national campaign on rheumatic conditions and their high prevalence in Portugal. Promotion of Myos goals and action plans. Ongoing since April 2008 Several cities, both in mainland Portugal and in the islands of Azores
Participation in the NFA's IV Leaders Against Pain Media, Leadership and Advocacy Training Seminar Official integration in ILAP- International Leaders Against Pain Coalition. Updating on recent research, advocacy grassroots & leadership, public relations & media workshops. August, 10 to August 14  
General Assembly of all Myos members: Among other issues, to make official the integration of Myos in ENFA, in order to fight for common challenges and goals at the European level November, 2008 Lisbon - Portugal

Future activities

 

Activity name Objectives Date Venue
Production of new information brochures: with updated and separate, distinct leaflets for FM and CFS Distribution through national support groups, Myos affiliates, hospitals, private clinics, health centres, pharmacies and media 2009 Lisbon - Portugal
Production of a manual/guide for the patient, under the supervision of Myos advisory board Distribution in the national health service: internal medicine and rheumatology departments in hospitals, health centres and private rheumatology offices. A small book to be given by doctors to the newly diagnosed patient 2009/2010 Lisbon - Portugal
Redesign of Myos website Development of new areas, including an interactive forum for patients 2009/2010 Lisbon - Portugal
Continuation of regional, national and international activities ongoing since our creation in 2003   From now on Portugal, Europe, USA

Expectations from the Network

The European Continent holds a high geographical and cultural diversity, but also populations who share a rich historical legacy of great achievements towards progress and higher living standards. These standards are based in common policy principles of human rights respect, that allow equal development opportunities, access to education, health care and social justice for all European citizens. Fibromyalgia has a high prevalence and a potential devastating impact on the lives of many patients and their families in all EU Member States, where more than 12 million people are estimated to be affected. In order to succeed in our national mission we, Myos leaders, as patient advocates of the Portuguese patients, think that fibromyalgia has to be officially acknowledged as a real chronic pain condition by governments, policy and law makers, researchers and health professionals, not only in our country, but in all Europe. We believe in dialogue, in the exchange of accurate information and discussion of views among different organizations, since FM does not choose nationality, ethnicity, gender, age, occupation, social status or country. Taking into consideration that the EU policy cannot be of exclusion, but of inclusion of all citizens, we hope ENFA can be a credible, strong umbrella organization and lead a European project to join all Members under common goals, representing patients' interests by the industry, researchers, physicians and politicians. ENFA should play a vital role by lobbying and raising awareness on a higher political level, based on actual facts and figures. Only then can we expect a brighter future and life quality to all patients in Europe.

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Contact

E-mail : contact@enfa-europe.eu