“Fibromyalgiportalen” – A Health Portal for Managing Fibromyalgia

Member News
The Fibromyalgia Association of Sweden (Fibromyalgiförbundet)

 

The Fibromyalgia Association of Sweden (Fibromyalgiförbundet) has been granted money from a state fund to run a project that will benefit those suffering from fibromyalgia. The goal of the project is to develop an interactive digital platform which will serve as a forum to share information relevant to managing the disease. We will strive to provide various tools for self-care and personal health. There will be a knowledgeable and experienced health coach available for motivational support and advice.  We want fibromyalgia patients to have access to the health portal free of charge and in the comfort of their own home. The portal will address areas such as physical activity, stress, pain, sleep, diet and social issues. There will be interactive tutorials, programs and information in the form of pictures, films, text and audio files with emphasis on visual feedback and notifications for monitoring progress. The users can live chat and directly contact coaches and peers to share experiences and provide motivational support. The content of the portal is based on market analysis and professional experience and will be under continuous improvement and development over the next few years.  Our aim is to have a beta-version ready at the end of 2017 and will be opened to the public during 2018. Our vision with the project is to relieve the healthcare system, provide methods for promoting self-efficacy and ultimately contribute to increased quality of life among sufferers of fibromyalgia. The users will have a great influence in how the interactive platform will take shape throughout the project. The project managers are currently comparing platform alternatives and working on content development and marketing strategies. Sweden has a national aim to be at the forefront of digital healthcare by 2025 and we are very excited to be part of this initiative through our project. We hope to provide our users with more independence and participation in society.

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“Patients as teachers in Health Professional Education” Award

Member News
The Pelvic Pain Support Network

The European Civic Prize on Chronic Pain Award Ceremony

Bron Canwell, a member of the Pelvic Pain Support Network, has kindly shared with our editors her insights after participating in and winning a specific category of The European Civic Prize on Chronic Pain.

“Two members of the Pelvic Pain Support network – Bron Canwell and Fiona Brown – were very excited to be invited to join in the Symposium on the Societal Impact of Pain in Malta, and were delighted to receive one of the first European Civic Prizes on Chronic Pain. The President of Malta, Marie-Louise Coleiro Preca, made an inspiring speech and presented the prizes.

Marie-Louise Coleiro PrecaShe had great insight into the impact of pain on individual lives, and the wider impact on society.  The symposium was a wonderful opportunity to meet a range of people from all European countries who share the goal of improving the lives of people with chronic pain. The situation was a lovely hotel by the harbour in Valletta.

The prize was awarded to us in the category “Patients as teachers in Health Professional Education”.  We have delivered sessions to nurses since 2009 and to doctors since 2016 in Leeds and Southampton. Feedback from our sessions shows that the students value our sessions highly. We have been very lucky to collaborate with lecturers/academic staff who are committed to the value of patient input. It was apparent from talking to other attendees at the symposium that our sessions are very innovative.

As a sufferer from pain, I have returned from Malta feeling very positive that there will be progress and very committed to helping that happen.”

 

 

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TNA UK Joint Patient & Healthcare Professionals Conference

Member News
Trigeminal Neuralgia Association (TNA UK)

 

Introduction

The conference was held at the Holiday Inn Hotel, Carburton Street, London, in two adjoining rooms (the Oxford & Cambridge business suites). The day was attended by a wide range of healthcare practitioners (HCPs) ranging from neurosurgeons, MS nurses, dentists to budding students, along with a large number of patients and carers.

The day was introduced by Mr Adrian Hale, chair of the Trigeminal Neuralgia Association (TNA UK), who welcomed everyone to the conference, which he hoped would be an enthralling day.

Session 1: Diagnosis

Professor Zakrzewska, chair of the Medical Advisory Board for TNA UK, started the day off with her talk on diagnosis. This was an interactive and engaging session that focused on integrating HCPs and patients. She invited four patients, with different diagnoses and history, to speak about their prior or current symptoms. The four patients respectively had experienced: typical TN, atypical TN, SUNA and TN secondary to multiple sclerosis. The histories were put before a medical panel containing a neurosurgeon (Mr Owen Sparrow), a neurologist (Prof. Turo Nurmikko) and a consultant of oral surgery (Prof. Tilly Loescher).

Following this interesting Q&A, Professor Zakrzewska continued her talk which highlighted the difficulty in reaching diagnosis (e.g. how cracked tooth syndrome and TN have a lot of overlap in their sensations). The overall impression given was that while every individual may have shared similarities in their presentation, each person will experience it differently. This leads to a difficulty in creating a simple questionnaire or a diagram that represents any one person’s experience.

Session 2: What does brain imaging tell us about trigeminal neuralgia?

Professor Turo Nurmikko presented on the usefulness of MRI scans in diagnosing and predicting treatment outcomes for trigeminal neuralgia. The session highlighted how MRIs have led to a reduced need to just open and ‘explore’ the posterior fossa. MRIs rarely gave false negatives (no compression/contact of the nerve). With the advancement of the MRI technology, it is now possible to differentiate between:

  • A contact between vessel & nerve.
  • A compression between the vessel & nerve.
  • A compression and pushing away of the nerve.

The session demonstrated how far imaging has come and its necessity in treatment planning for prediction of success in MVDs.

Rachel Coates and the University of Leeds

Dr Rachel Coats, a psychologist, made an appeal relating to a potential study on cognitive and motor impairment whilst on and off of medication. She asked members to contact her by email, if they wished to participate.  r.o.a.coats@leeds.ac.uk

TNA AGM

Chairman Adrian Hale delivered his annual report, highlighting all the work that the TNA UK had completed over the past year. The intention to amend the constitution by adding an object on supporting research was discussed. With some suggestions from the TNA UK membership, the motion was moved.

As per charity guidelines, three TNA trustees had to resign (and then were re-elected onto the committee). This year, it was Jeannette Moore, Doug Moore and Glenn Davies.

New Website

Dr Robert Coveney demonstrated the new website to the membership and professionals, highlighting how information had been made precise, concise and easier to access. Suggestions were offered by the membership which have been considered and applied as deemed necessary.

Session 3: Medications

This session focused on group activities. The membership jointly wrote down their first, second, third and – if applicable – their fourth prescribed medications. The effectiveness of each was discussed alongside why the medication was stopped (e.g. side effects or because the drug stopped providing pain relief.)

Meanwhile, the HCPs discussed what they believed were the best first and second line therapies for trigeminal neuralgia. The general consensus was carbamazepine should be the first line drug, as per NICE guidelines.

Professor Zakrzewska chaired this session and discussed the importance of establishing these guidelines, especially in the light of many patients not being prescribed carbamazepine as the first line drug. It highlighted the necessity of referring them to HCPs for more accurate treatment.

Session 4: Outcome measures in TN and why are they important?

An interactive session by Dr Richel Ni Riordain that honed in on what TN patients feel are the best measures of ‘success’ from a medication. Some examples included:

  • As few side effects as possible.
  • Better function in a work environment and being able to carry out daily activities.
  • Complete and long lasting remission from pain.
  • No interactions with other drugs.
  • Minimal or no loss of effectiveness with time
  • Generally better social interactions.

Through expert patient panels, such as the example conducted today, reviewing literature and further discussions with healthcare providers, this will allow us to be able to develop a true outcomes criterion for trigeminal neuralgia. Hopefully, this will lead to a questionnaire to help best plan effectively regulate and measure outcomes.

Session 5: Surgical outcomes

The final session of the day had a harrowing, insightful and eye-opening beginning.  Anne Eastman related her journey through diagnosis and treatment. Her tale, which spoke of her misdiagnosis and journey through fear into pain-free life, was hard-hitting.

Mr Owen Sparrow, a retired neurosurgeon, and his colleague, Imran Noorani, discussed the surgical outcomes based on 30 years of data they have followed up. Mr Sparrow summarised the different surgical modalities that were used for the treatment of TN, including MVD, internal neurolysis, various rhizotomy procedures, etc.  Microvascular decompressions (MVD) are one of the only surgeries that have a good long-term reliable data (70% success of being pain-free at 5 years).

Mr Noorani highlighted that older patients tended to have less MVDs and more needle-based procedures. He highlighted that if there is a reoccurrence of pain, usually the pain returns at a much-reduced level which means that medication is usually effective. Long-term pain relief statistics are the same, no matter what vessel (be it vein or artery) is moved.

The final part of this session was presented by Professor Tilly Loecher who spoke about stereotactic radiosurgery (sometimes called gamma knife). This is where a high dose of radiation is delivered into a specific location. Originally designed for minimally invasive treatment of brain tumours, it has now evolved for use in other conditions, such as TN. Currently, TN is only commissioned (on the NHS) to be treated in two units – London & Sheffield. In discussing outcomes of stereotactic radiosurgery, satisfaction varied based on pain relief and the side-effects thereafter. A high proportion of patients will get numbness following treatment and a 5% proportion will get ‘painful numbness’ or dysesthesia.

The sessions all highlighted the need to carefully plan, weigh up the choices and not to rush into anything.

Closing of the conference

Mr Adrian Hale, chairman, closed the conference, not before thanking all the speakers for their time today and the membership for coming. Mr Owen Sparrow was presented with an engraved letter-opening knife as a thank you for his services to TNA UK and helping combat trigeminal neuralgia.

The present report has been provided by Dr Robert Coveney, Dental Surgeon and Trustee

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Galician Rheumatological League (LRG) Calendar of events

Member News
Galician Rheumatological League (LRG)

February

CHILDREN AND RHEUMATIC DISEASES

The Galician Rheumatological League (LRG) organized a workshop for children with rheumatic diseases and their parents.

March

WORKSHOP

In March, the LRG organized a workshop on the Management of Irritability for members who suffer from Chronic Pain

April

SOCIETAL INFORMATION CAMPAIGN

LRG Societal Info CampaignIn April the LRG organized 3 more informative and preventive sessions about rheumatological diseases. In these conferences, we normally get the participation of a rheumatologist, a board member, our occupational therapist and/or our psychologist.

MEETING WITH HEALTH AUTHORITIES

Our President Ana Vázquez and 2 members of our technic workers attended a meeting with Galician Health Authorities regarding the electronic platform, called E-SAÚDE, where Galician residents can access their health issues. We were promised that associations will participate in the further development of the E-Platform.

May

CONGRESS OF PRIMARY CARE DOCTORS – PATIENTS YESTERDAY, PROTAGONISTS TODAY

 SEMERGEN CongressThe LRG was invited to participate in the 5th National Congress of SEMERGEN (Spanish Society of Primary Care Doctors). The Congress took place in Pontevedra on May 4th and 5th. Six of our members attended.

Our president participated in a roundtable debate on the topic of electronics in health care. (see the picture below).

Our League presented a poster about insertion in the workplace for people with Rheumatic diseases.

There were workshops about Doctor Google, rheumatoid arthritis, etc

There were several interesting roundtable debates about mental health, rare diseases, the 4 different types of osteoarthritis and their treatment, the electronic platform which all Spanish people can use about illnesses and patients of our autonomic region of Spain can contact about their personal health file.

CONCERT

On May 3rd, about 150 persons attended a concert of the group PRIME MINISTERS. The objective is awareness of rheumatic illnesses amongst the youngsters.

FUTURE OF EUROPE WITH ITALIAN AMBASSADOR

On May 8th, we were invited to attend a conference about the future of Europe in Santiago de Compostela, by Mr Stefano Sannino, the Italian ambassador in Spain. The photograph at the left shows the ambassador, the vice-president of the Galician Government, the vice-president of our League, Mrs Antonia Pombo and Jose León, our general manager.

NATIONAL PLATFORM OF INCAPACITY

On May 8th in our office, we had a meeting with the Galician Delegation of the National Representative Platform of Persons with Physical Incapacity. This entity has existed for 30 years and offered us diverse activities (accessible holidays, information about accessible sites, tourism and bars/restaurants, etc.) for our members. They represent almost 100,000 persons with physical incapacity.

MEETING WITH THE MAYOR OF TOWN

LRG Meeting the MayorThe mayor of our town and other local authorities visited the Civic Centre in Coruña where our League has its headquarters in order to know the needs of the people of that part of town. Our president and general manager were invited too and explained the structural ameliorations the Centre needs.

FUNDRAISING RUN

LRG charity run in a school of CoruñaOn May 17th, the Day of Galician Language, the LRG, together with the Club Maristas, organized a charity run in that school of Coruña, in order to join funds for our social health programmes and for the visibility of RMDs. There were several competitions in different categories. There were medals and gifts for the children.

MUSIC IN SUPPORT OF THE LRG

7 SETENTAOn May 20th, we enjoyed the first of a series of rock concerts which the group “7 SETENTA” will perform in our whole autonomic region, in order to help us with making RMDs more visible and to fundraise for our League. Many people in the town of Ribeira had a great time with a party day to support the League, with tapas, donations, selling chocolate bones and enjoying Rock and Roll.

SCHOLARSHIP FOR WEB

LRG-scholarshipOur League has been selected by a Foundation, together with 9 other big social entities in our Autonomic Region of Spain, to receive an important scholarship to ameliorate/recreate our web regarding structure, design, and functionality. On May 30th the Official Reception took place, with an article in newspapers.

MEETING WITH AUTHORITIES

Meeting E-SAÚDEOn May 30th, our city government started an initiative to create a Sectorial Advisory Board of Health, so they can become an observer of the Health of the Citizens, relying on different health agents – such as patient associations, institutions, and authorities involved in health. It will also serve to offer solutions to more specific aspects of our city, but from several points of view (health in the workplace, environmental health, etc.)

 

June

CONFERENCES

Liga galega June 6 ConferenceOn June 6th we had a conference about sexuality and familial planning, for people with a rheumatic illness.

On June 9th LRG has organised a conference with a collaborating rheumatologist about biologic treatment for members of our League.

EXCURSION WEEKEND

During the weekend of June 10 and 11, the LRG, organized – as part of its recreational activities – a weekend in a spa and visit to another region in our Autonomic region (Ribeira Sacra).m This was a weekend of rest and fun spent with friends and family.

OUR STARS

AS NOSAS ESTRELAS Festival

On June 18th a festival OUR STARS (AS NOSAS ESTRELAS) took place in order to obtain funds for the LRG. About 20 youngsters danced and sung in a contest presented by Miss Spain 7 Continentes, Zulema Vázquez. Then a video about the LRG was projected.

 

 

 

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ADDCA News

Member News
News from ADDCA, Associação de Doentes de Dor Crónica dos Açores (Chronic Pain Patientes Association of Azores)

 

From April to June 2017

1 – ADDCA continued providing member sessions, open to the public, on medical topics on chronic disease prevention and treatment, both with positive psychological reactions and with appropriate behaviors that reduce the impact of the disease. It is «Functional, Patient-centered Medicine» focused on the interaction of personal, genetic, environmental and lifestyle factors.  This can influence the long-term health and complexity of chronic diseases and enable physicians and other health professionals to engage in a proactive and personalized practice and empower the sick to take an active role in the progress of their own health.

Continuing to talk about pain prevention and pain management, where the advantages of this approach are very evident, it is important to highlight the contribution of several professionals and different areas.

And we organized meetings with:

  • Dr. Ivone Machado, Nutritionist and Member of the Board on «Functional Foods and Constipation»

«Functional Food» can be defined as that food that has a positive impact on human health, physical performance or state of mind, as well as nutritional value; contains active substances that benefit the body, thereby helping to slow down the development of diseases such as diabetes or cancer and promote health; in addition, functional foods also help to improve health problems, such as constipation, a very present problem in patients with chronic pain, either because of limitations in their lifestyle and activities of daily living, or through food or medications.

  • Physiotherapist João Sá pointed out the importance of «Prevention of Falls»

The aging process is related to numerous transformations with implications for functionality, mobility, autonomy, health and, consequently, the quality of life of the elderly and is associated with the high incidence of chronic and degenerative diseases, often accompanied by pain and dependence.

Risk factors for falls can be divided into three categories: intrinsic (or individual) factors, extrinsic (or environmental) factors, and exposure to risk.

One way to avoid falls is to act on prevention. This can be achieved through a combination of: awareness-raising and measures to change attitudes such as campaigns in the mainstream media; behavior modification measures such as regular physical activity prescribed and supervised by qualified professionals; measures such as environmental changes and regulation.

2 – ADDCA appointed the Coordinator of the Scientific Council, Dr Maria Teresa Flor-de-Lima and Dr Ivone Machado, member of the Board, to represent the Association in matters of interest to the Association and to the members that are held in Portugal Continental and International level.

3 –  ADDCA activities included:

  • We attended the «11thedition of the European Patients’ Rights Day», on May 10th in Brussels at the European Economic and Social Committee, meeting on the theme «The European & National Medicines Regulatory Systems: the challenges for an equitable, timely and suitable access to innovation».
  • On behalf of the secretariat of the MEPs’ Interest Group «European Patients’ Rights & Cross-Border Healthcare», we were invited to the meeting «HOW TO ENSURE TREATMENTS AND THE RESPECT OF PATIENTS’ TIME ACROSS EUROPE? Focus on timely access to innovative medicines after the European Commission approval», held in Brussels on June 28th at the European Parliament.
  • In the Marketplace, during the meeting SIP 2017, 7th-9thJune in Malta, we were able to publicize PAE members’ activities and actions related to SIP and Association´s actions.

 

4 – ADDCA was a supporter of SIP 2017 and endorsed its objectives:

“We know that chronic pain can´t be cured, but it must be relieved by medications and other treatments for a better quality of life and avoiding suffering.”

“We support SIP 2017 because we are aware of the relevance of the impact of Chronic Pain on patients, families and societies, of the pain control as quality of lyfe and of the importance of pain as a quality indicator for health systems.”

 

5 – ADDCA was accepted as a new member of PAE General Assembly held the 9th June in Malta.

6 – ADDCA subscribed, from the beginning, to the project «Pain Euro-Mediterranean Coalition» (the challenge of chronic pain: from the European agenda into the European culture),  presented in Minorca during the Sine Dolor World Park in May 2017 and under the support of the MEPs’ Interest Group in the European Parliament «European Patient´s Rights & Cross-border Healthcare», the European Multidisciplinary Network in Pain, Research and Education, Efhre International University, and with the promoters «Sine Dolor Association» and «Active Citizenship Network».

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The impact of pain on Balearic society

Member News
Sine Dolore

PRESS RELEASE

Health professionals recommend reducing waiting lists to address pain quickly and effectively.

Reducing waiting lists to allow for pain management quickly and efficiently, creating pain units in each hospital on the Balearic Islands, enhancing multidisciplinary teams in these units, increasing training, and shifting patients from public to private healthcare are some of the conclusions of the discussion group on “The impact of pain on Balearic society” held in the Insular Council of Menorca on 5 May in the framework of the activities of the third edition of Sine Dolore World Park.

Sine Dolore Association May 2017This debate was organized by the Sine Dolore Association and Grünenthal Laboratories.  Participants included health professionals, represented by Dr Marcello Giuseppe Meli, director of Aliviam-Clínica del Dolor de Mallorca, Dr Jordi Moya Riera, director of the Pain Unit at Mateu Orfila Hospital, Antoni Real Ramis, president of the Official Association of Pharmacists of the Balearic Islands, María Dolores Gómez Guillermo, member of the Spanish Association of Anesthesia Nursing, Reanimation and Pain Therapy. Gemma Fernández, president of the Association Sine Dolore and Eva Bech, a member of the Board of Directors of the Platform of Patient Organizations participated in the group of patients. The university was represented by Pedro Montoya, professor of Biological Psychology at the University of the Balearic Islands. Josep Pons Fraga, editor of Menorca Es Diari attended on behalf of the media. On behalf of the administration, María Cabrisas Pons, director of the Department of Social and Family Affairs of the Insular Council of Menorca, and Angélica Miguélez Chamorro, deputy director of Attention to Chronicity, Sociosanitary Coordination, Mental Health and Uncommon Diseases of the Government Health Service of the Balearic Islands attended. Juan Quintana, director of public affairs at Grünenthal represented the industry. The journalist Jaume Segalés acted as moderator of the discussion forum.

This study shows that 42.8 per cent of these citizens recognize that they have suffered recurrent pain during periods of six months or more at some point in their life and 82.5 per cent describe it as of high or very high intensity. In addition, 79.8 per cent believe that it is necessary for public administrations and policy makers to give more importance to pain and 85 per cent considers it important to improve specialized training in this field among all health professionals.

All participants in the initiative highlighted the work being done by the Sine Dolore Association in making visible the invisible, the pain, with initiatives such as the Sine Dolore World Park, the only theme park in the world against pain and the quality of life.

The president of the Association Sine Dolore, Gemma Fernandez, opened the debate with a research study on “The approach of pain in the Balearic Islands” based on a survey conducted last April with 400 people (of which half were men and half were women), between 18 and 75 years’ old, and residents of the islands.

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Sonja Paints Away the Pain

Member News
The Fibromyalgia Association of Sweden (Fibromyalgiförbundet)

 

Sonia David

Sonia David

To manage fibromyalgia pain is a struggle, and the management strategies differ from individual to individual. In the March issue of our member’s magazine, we put the spotlight on one of our members who uses her creativity to get pain relief. Sonja David has been painting all her life, but it was only in recent years that she went public with her hobby. And she also noticed that it helped her fibromyalgia pain.

“Painting makes me enter another world, where I don’t feel any pain. It’s almost like meditation. Of course the pain comes back when I stop painting, but for a while I am totally pain free,” she says.

Sonia David - paintings

Two of Sonia’s paintings

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The #Fuckfibro Chopper

Member News
Fibromyalgi Förbundet

Dick van Dotz and his #Fuck Fibro chopperJust before Easter our organization and fibromyalgia received exposure at a rather unusual venue when it comes to fibromyalgia – namely a motor show! A man by the name Dick vanDotz had contacted us, asking for information material on fibromyalgia to be handed out at a motor venue that he was attending.Dick was taking part as an exhibitor, and to raise awareness of fibromyalgia Dick had built a smashing #Fuckfibro chopper.

Dick does not suffer from fibromyalgia himself but has friends who do, so he wanted to contribute in any way that he could, and came up with the idea of the #Fuckfibro chopper.

 

 

The motor show had over 75,000 visitors, so a lot of people got to see Dick’s magnificent chopper! We are very grateful for his initiative to help raising awareness of fibromyalgia!

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Rehabilitation Week 2017

Member News
The Fibromyalgia Association of Sweden (Fibromyalgiförbundet)

 

On the 4-6th April, members of the Fibromyalgia Association of Sweden attended “Rehabilitation Week 2017”, organised by The Swedish Society for Rehabilitation Medicine.

Prof. Torsten Gordh

Torsten Gordh (photo right), Professor of Clinical Pain Research, was one of the lecturers at “Rehabilitation Week 2017”

The Congress offered many interesting lectures and seminars held by prominent pain specialists, researchers and key figures within the health sector. Lecture themes, among others; fatigue, pain, sleep disturbances, brain fatigue and cognitive problems, and physical training recommendations for FM and ME/CFS patients.

Apart from being visitors, the association also took part as exhibitors. The Fibromyalgia Association of Sweden’s  stand was well-attended, and many positive comments were received regarding the project “The Fibromyalgia Portal”.

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Sine Dolore World Park

Member News
Sine Dolore World Park

After a successful edition 2017of the World Park Against Pain and for the Quality of Life, held between 4-7 May, the island of Menorca is already thinking about the next edition and planning ahead.

The president of the Association Sine Dolore, Mrs. Gemma Fernandez, has announced in a local radio show that the fourth edition of the event will take place from April 28 to May 6 , 2018.

Save the date for an exquisite mix of scientific communication events, culture, traditions, and fun meant to raise awareness on the impact of chronic pain, how to recognize it, how to face it, how to live with it.

Check the agenda of this year’s event to know what to expect.

 

 

 

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