International Happiness Day

Member News

Chronic Pain Patients Association in Azores

In the ADDCA, Chronic Pain Patients Association in Azores, it is usual to celebrate important dates such as international days and regional days, as Friends Day and Carnival.

International Happiness DayOn International Happiness Day, the 20th March, together with 5 other associations, we gathered 120 people; they made games, laughter therapy, embrace of happiness, and a shared snack came to complete a relaxed atmosphere.

It was a very happy day.

Carnival @ the ADDCA

Member News

ADDCA – Chronic Pain Patients Association in Azores

To mark and celebrate the Carnival, the ADDCA (Chronic Pain Patients Association in Azores) held a party on February 25 where users and partners gave wings to their imagination and made of that moment a memorable “day”.

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To enter the carnival spirit, the association’s members began days before, to create and decorate carnival masks using the most diverse materials which would later adorn the space of the association. And they did not stop there: even the party had the imprint of the association, they tried to make a carnival costume for the Cultural Partner Cheerleader who disguised herself as Cleopatra at the hands of the ladies who give life to that association.

In addition to a lot of music and dancing, plenty of traditional «malassadas» snacks were eaten, and to the sound of the samba and other more Portuguese ballads people ate and exchanged life stories.

And as a picture is worth a thousand words I invite you to take a look at the photographic report.20170225_15435520170225_154809

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ADDCA’s Open Days

Member News

ADDCA – Chronic Pain Patients Association in Azores

The ADDCA (Chronic Pain Patients Association in Azores) held the first of four ‘public open days’ on Saturday, the 25th March.  These are to talk about chronic pain: how to cope with it and even to prevent it.

17474101_306463669772555_747195170_o 17505820_306464483105807_1675546446_nThe presentation by the pain medicine physician focused on the definition of pain, the mechanisms that make chronic pain appear and remain longer than three months, the differences between acute pain and chronic pain, and pain as a disease. It was also explained how the person with pain is evaluated, the individual factors that can influence behaviours resulting from this chronic situation.

The psychologist also talked about the strategies used to help patients deal with pain, giving them tools with which he can reduce the influence of his emotions, thoughts and behaviours in the amplification of pain.

During the meeting, at which there were present around two dozen people, testimonies were given and discussions were held on how patients can access pain treatments.

Meeting in the Parliament 12 April – ENFA Action

Member News
European Network of Fibromyalgia Associations (ENFA)

 

ENFA event April 12 2017 groupOn April 12th, the European Network of Fibromyalgia Associations (ENFA) organised “The position of the fibromyalgia patient in society” event in the European Parliament, hosted by Member of the European Parliament (MEP) Takis Hadjigeorgiou.

 

The meeting was opened by a video message from the MEP Takis Hadjigeorgiou who, because of other obligations, has not been able to attend.  ENFA event April 12 2017 Souzi presentThe meeting chaired by Souzi Makri, president of ENFA, started with a short introduction on what fibromyalgia is, followed by a presentation by Joop van Griensven, treasurer of ENFA, on the history and achievements of ENFA from the beginning of the organisation.

A Dutch awareness video has been presented, which told the story of a woman with fibromyalgia and her journey to achieve a meaningful life after the diagnosis. The video was subtitled in English and 9 different languages are actually available in subtitles, due to the much appreciated contribution of Grünenthal who intervened with a restricted grant in this project. More info on how to achieve a copy of the video can be found on the website of ENFA www.enfa-europe.eu

Rinie Geenen then treated the subject of the social consequences of fibromyalgia presenting new research data about invalidation of fibromyalgia and more specifically, on the differences shown in that research between different European countries. Strangely enough, the situation in the U.K. seemed to be worse than one might expect, considering their well-respected healthcare system.

Donna Walsh explained in her presentation the relation between Fibromyalgia and the Brain, Mind and Pain interest group, and particularly in relation with the written declaration and the call to action #makeworkwork.

The last presentation came from Steven Bevan and highlighted the relation between work and fibromyalgia. He emphasized that patient associations should make more work in addressing employers to keep people with fibromyalgia employed, as all the research show that working is improving the health condition of Fibromyalgia patients. However, this should be achieved by addressing the patients individually as no patient is the same. All presentations and the video were starting points for long discussions on all the issues ENFA is struggling with for years, the result of the debate being meant to help EFNA developing new targets to address in achieving their goals.

The presentations of the speakers together with some pictures can be found on the website www.enfa-europe.eu

Airing Pain

Member News
Pain Concern – UK

 

Pain Concern produces Airing Pain, an online radio show also available on CD. Airing Pain brings together people with chronic pain and top specialists to talk about the resources which can help.

shutterstock_507302314-podcastAiring Pain is an invaluable resource for those living with chronic pain, their families, friends, carers, supporters, employers and health professionals. All resources are certified by the Information Standard, with some of Pain Concern leaflets and packs also being used by NHS Scotland.

 

Latest programmes

After receiving funding from the Women’s Fund for Scotland, we recently produced two radio programmes focusing on female genitourinary and pelvic pain; a subject which, despite affecting around 1 in 7 women at some point during their lifetime, still remains taboo for many in the healthcare and wider communities.

These programmes focus specifically on two of the most commonly diagnosed causes of this pain: vulvodynia and interstitial cystitis (aka ‘painful bladder syndrome’ or simply ‘chronic bladder pain‘). The podcasts contain interviews with specialists and people living with these conditions, who share their patient journeys from diagnosis to the present day as well as offering advice on pain management.

Both programmes are now available to listen on demand as a free podcast via (ctrl+click to open in a new tab) the Pain Concern website, Audioboom, Able Radio and most podcast apps.
https://audioboom.com/posts/5705568-88-chronic-bladder-pain-interstitial-cystitis
https://audioboom.com/posts/5605599-87-vulvodynia

You can listen to Airing Pain fortnightly on Tuesdays at 8 pm GMT via www.ableradio.com. Podcasts are then available to listen here and on Pain Concern website. Subscribe to the Airing Pain podcast on iTunes and through most podcast apps.

Pain Concern is also present on Twitter (@painconcern) and Facebook, so if you’re on social media please feel free to check out and share any posts you think your followers would find particularly helpful or interesting.

The full catalogue of all Airing Pain programmes for the past 8 series can be found via Pain Concern’s website: www.painconcern.org.uk

Airing Pain has covered a vast array of in-depth topics – migraine, cancer pain, PTSD for war veterans, endometriosis and FGM, to name but a few – and over the next few months dementia, back pain, gout and horticultural therapy will be added to the ever expanding list.

Sine Dolore gets a Special Award

Partner News

Sine Dolore

The Sine Dolore World Park receives the Special Award at the National Music Awards, Tino Casal Maó, March 13, 2017

This weekend, the Cultural Association Carlos Jeannot, organizer of the National Tino Casal Music Awards, presented the Special Prize of the first edition of these prizes to the Sine Dolore World Park (SDWP), as the only theme park in the world Against pain and for the quality of life.

As announced last February, the National Tino Casal Music Awards were delivered during a great concert held last Friday, March 10 at the Auditorio Príncipe Felipe de Oviedo. The most talented and representative musicians of all the genres and sections of the best national music gathered in a great concert to pay homage to his friend Tino Casal and all the winners, offering a unique and unrepeatable show.

The Special Award to the SDWP is the recognition of an initiative that is unparalleled all over the world.  Next May it will celebrate its third annual event. The president of the autonomous   community of Cantabria, Miguel Angel Revilla, was in charge of delivering the award to the Honorary President of the Association Sine Dolore, Dr Jordi Moya, as a token of gratitude for the work carried out by Dr Moya, founder of the SDWP, to alleviate as much as possible the unnecessary suffering of people suffering from chronic pain and increase their quality of life.

It should be noted that the Cultural Association Carlos Jeannot is a non-profit organization, registered in the Principality of Asturias and founded in September 2013 with the aim of disseminating all forms of culture. Julia Díaz García and her vice-president Víctor Casal, cousin of Tino Casal, have written 25 books on classical, contemporary and traditional composers and have edited 14 albums, several videos and 5 short films awarded at national and international festivals.

On the other hand, yesterday after the return trip to Menorca, the partner and founder of the Association Sine Dolore, Sr. María Bibiloni, presented the National Tino Casal Music Prize to the Virgin of Montetoro, the patroness of all the Minorcans.

The Back Pain Show

Member News

Back Care UK

Visitors to The Back Pain Show – 19 & 20 May, St. Andrews Stadium, Birmingham – will be able to find out with a simple scan if they are at risk of osteoporosis.

backpain showOsteoporosis is a common systemic disease in which bone becomes fragile due to the reduction of bone tissue and is more prone to fracture particularly in the hip, spine and wrist area. One in two women and one in five men in the UK will suffer a fracture after the age of 50 and there are three million people in the UK alone suffering from osteoporosis.

The scan itself takes approximately two minutes and is a simple and painless procedure that uses a very low dose of radiation. The cost of this service is usually £100.00, but in order to raise osteoporosis awareness and give people the opportunity to know whether they are at risk, the organisers are offering a FREE scan at the show in exchange for a donation to the national charity – Backcare.

Come along to the show at St Andrews Stadium, Birmingham, on 19 & 20 May, and book your free scan at The Backcare stand. You can register for free entry plus book a place at numerous talks and presentations by going to www.thebackpainshow.co.uk

With over 40 exhibitors displaying everything from pain relief therapies to specialist clothing and furniture, the show is a must for all those suffering from back pain.

Study Day on Trigeminal Neuralgia – June 3rd, 2017

Member News
Trigeminal Neuralgia Association UK

Adrian Hale, Chairman of Trigeminal Neuralgia Association UK, brings from London the news of an interesting study day for the patients suffering from trigeminal neuralgia, whose experiences with pain are to be heard by healthcare professionals during one Study Day on June 3rd, 2017 at The Holiday Inn, Carburton Street, London W1W 5EE.

This action puts the patients forward through the slogan “nothing about us without us” and gets them actively involved in the process of improvement of the diagnosis and management of trigeminal neuralgia.

Among the objectives of this course:

  • Discuss the complexity of a diagnosis of trigeminal neuralgia;
  • List the imaging techniques that may help improve diagnosis or inform on management;
  • Recognise the differences that arise between what healthcare professionals prescribe and what patients actually do;
  • Identify core outcome measures when evaluating patients with trigeminal neuralgia;
  • Compare the different surgical options for trigeminal neuralgia;
  • List additional support that can be provided for patients and healthcare providers on trigeminal neuralgia.

You can register for this event any time before the 22nd May 2017 by accessing the Professionals Area of the association’s website http://www.tna.org.uk/

Sine Dolore World Park is supported by the Mahon City Council

Sine DoloreThe association Sine Dolore reports on the support and recognition that the action Sine Dolore World Park gets from the local authorities.

The Mayor of Mahón, Conxa Juanola, and the coordinator of the municipality’s Sine Dolore World Park, Councilwoman Maria Membrive, receive the “Tino Casal” National Music Prize awarded to the only theme park in the world against pain and for quality of life.

Through   this   gesture,   the   Mahon   Council has   wanted   to   make   public   its unconditional support to the Sine Dolore World Park.

World Day of Diseases of Central Sensitization

Member News

Red española de FM-SFC-SQM

On the occasion of the World Day of Diseases of Central Sensitization, the Red española de FM-SFC-SQM in collaboration with the Institute Padre Rubinos, will organize a day with experts in this matter. This event is aimed at health professionals, associations, affected patients and their families – and the entire population.

red espagnola

PROGRAM

  • 11:30 – Welcome by the President of Institute Padre Rubinos;
  • 11:45 – Conference: ‘Central Sensitiza on Diseases’ Current situation… Where are we? In charge of Dr. Fernández Solá, Hospital Clínic of Barcelona. Presents and moderates Dr. Manuel Viso, Hospital San Rafael, collaborator program Radio Voz (Voices of Coruña);
  • 12:45 – 13:00 – Question Time;
  • 13:00 – 13:30 – Concert of the singer and composer of A Coruña Hugo Torreiro, who recently presented his new album ‘Vuelvo a las andadas’. This day, in solidarity form, he will sing some songs from his new work. Hugo Torreiro, appeared in the television competition ‘La Voz’, and at 21 years of age is already a veteran singer in A Coruña, with two albums under his belt ‘Nada que ver’ and ‘Las llaves de mi corazón’, and an extensive curriculum of performances in the area and surroundings, and also fan club.

Dr. Fernández Solá, consultant doctor of internal medicine of the Hospital Clínic, Barcelona, and associate professor of medicine at the University of Barcelona. He is the author of the book ‘Sobrevivir al cansancio’ (Survive Fatigue), in which he talks about some keys to a better understanding of SQM.

AREAS OF INTEREST

  • Chronic Fatigue Syndrome and Fibromyalgia;
  • Chemical and Environmental Sensitivity.

INVESTIGATIONS

  • Member of the Neuroscience Area of IDIBAPS since its foundation;
  • Research Fellow in Neurology, Mc Gill University, Canada, 1989;
  • Member of the Consolidated Group of Muscular Research of the Internal Medicine Service of Hospital Clinic;
  • Member of the Expert Committee for Fibromyalgia and Sd of Chronic Fatigue, CATSALUT;
  • Member of the Scientific Committee on Clinical Medicine and the Foundation for Fibromyalgia and Chronic Fatigue Syndrome;
  • Conducts research in clinical and basic aspects of the pathogenesis of muscle and neurological injuries due to alcohol consumption and also in clinical, genetic and pathogenic aspects of Fibromyalgia and Chronic Fatigue Syndrome.