FM CONFERENCE AND PAMPERS 2011 ANOTHER BIG HIT

By Jeanne Hambleton ©

The Fibromyalgia Conference and Pamper Weekend in April on the south coast was another great success inspite of cancellations by the Americans. Described as a ‘coalition’ conference many Group Leaders played a major part in collecting stage payments at group meetings over several months, to enable delegates to come to conference. Without the support of those Leaders, many living on benefits would have been unable to come. Others found their local Rotary Club willing to help fund their visit to the conference. So many people pulled together to make it happen and during the ‘fond farewell’ it was clear that they all enjoyed themselves.

The conference brought together two major charities, FMA UK and FMS SAS (Surrey and Sussex) to work with FibCon independent conference Folly Pogs team, striving to raise funds for research to find a cure. The success of the event was due to those who supported us and a few dedicated people who desperately want to see a cure for fibromyalgia.

It was another ‘win win’ event for delegates with 14 speakers, 14 work-shops, with many presentations provided by fibromites with a story to tell. There were also exercise programmes and good evening entertainment. Delegates are still talking about the fibro fillies horse racing and racing pigs with knitted woollen jockeys, the Friday highlight. Saturday saw the Cockney Barrow Boys with a sing-along of London songs and a mini re-enactment of an air raid with siren, which brought memories flooding back to some. On Sunday the conference was entertained by a team of four mediums, with humour, bringing messages from loved ones and the return of a favourite comedian who entertained us in 2010 – Paul James.

COMPETITIONS
Some 19 delightful Fibro Ducks were entered for the Best Dressed FD competition with three winners – Debbie Wilson, Maggie Stewart, and Orla Desmond – all winning first place. I am guessing the surnames are right as no one gave their full name. Judges Pam Stewart, Nichola Bond and Simon Stuart found it hard to make a choice. The Fibro Pearly Queen, the first prizewinner, was Maggie Perry, fibromite, who runs a Bed and Breakfast business in Kenilworth in the Midlands. Running a close second were the Pearly Prince and Princess, Ahmed Benallegue and Orla Desmond from Reading, who had also spent hours stitching on Pearlie buttons, to the delight of Cockney Jim, the Pearly King of Camberwell and Bermondsey.

PROGRAMME
Due to the unexpected late cancellation of the American doctors it was difficult to find replacement keynote USA speakers. But UK Dr Kim Lawson, international researcher, from Sheffield University, was among the favourite speakers with two presentations. Dr Nick Avery (CAM) returned and was well received again. Following her success in 2010 Dr Nina Bailey returned and after her presentation spent the day talking to fibromites about their problems. Dr Mark Cropley from Surrey University, a sleep specialist, also visited conference to network, to meet delegates and hear the speakers.

Dr Ian Rubenstein, a GP, had some humourous stories to tell and brought light hearted entertainment to the speakers’ room with his medical and mediumship re collections. Other speakers included Dr Thierry Conrozier, a French consultant rheumatologist; Dr Ruolin Sun, a Chinese herbalist and acupuncturist; nutritionist Joanna Majithia from the Institute of Optimum Nutrition; Mary Jane Burgess, a clinical hypnotherapist from Mind over Matter; Sue-Ellen Nicholls and Nicky Stoddart, pain management consultants; Andy Pothecary, a Special Rheumatology Pharmacist at the Royal Cornwall Hospital, Truro; Rebecca Richmond, creator and author of Forget Fibromyalgia; Steve Porter and Heather Gale who spoke about titanium technology and the new healing Black Wand; and Ken Murishwar from Midhurst who told his audience being healthier is simple, with just juice and 5 a day.

In the workshops mainly presented by fibromite, Suzie Oulton told her proto-col story from wheelchair to back to normal and offered tasters of her ’green magic’ which looked suspicious but was quite tasty; Jane Russell the dental hygienist who was a big hit in 2010 was back with more information and dental goody bags; Caroline Hinkes spoke about the Tried and Tested group, HeartMath practitioner and training; Kristina Richardson offered inspired coaching for getting back to work. Kit Stapely gave a talk and laughter workshop, and describing how laughter helped her recover from cancer. Marie-Caroline Scheid-Pickford described her very cold experience at -135o Celsius with cryotherapy (Kriotherapy) at Champneys.

Stella Bernardi, FMS SAS Co-Chair had prepared her work for the power point presentation on Computers for Beginners. But due to a fall she landed in hospital two days before conference and did not make it to conference. Our best wishes for a speedy recovery Stella. Instead Ray Brunton from the Worthing FM SG, an IBM computer buff, stepped in and ran the workshop. A big thanks Ray. With another last minute cancellation due to illness Nichola Bond GL from Worthing FM SG stepped in with ‘How to Start a Group’. Delia Mead with her Family History workshop in the coffee shop was a great success and was busy all morning with her magazines and ‘how to’ brochures.

The exercise workshops were provided by Roz Macarthur who did dance and tone and Pilates, while Chris Milton taught Tai Chi and Qigong mediation and breathing. Anna Moorby, visiting from London introduced the new Healthy Steps – a mixture of dance and exercise introduced as the Lebden system. Sunday saw tables and stands with pamper therapists, mind body and soul readers, art, handicraft and products.

FMA UK and FM SAS both had information stands available throughout the weekend and helped each other and many of the delegates. There was lots of talking to like minded folk, joy, laughter and delight at meeting friends from last year and as well as quite a bit of problem solving. Chairman of the FMA UK Trustees Pam Stewart and SAS Trustee and Worthing GL Nichola Bond and were answering FM questions all weekend – a great opportunity not often available.

THE FUTURE
I am under ‘family orders’ to stand back and give up the conference, but I have heard whispers that the conference is expected to go on possibly in April 2012, so watch this space. As South Downs, the present venue, is already fully booked for 2012, the conference would have to find a new venue. I am told a few folk are hoping to keep the conference going and make this happen again in 2012. Somehow I think I may be disobeying orders, as I cannot believe I will be able to stand back and not share a tip or two.

THANKS
Our thanks to everyone who worked so hard to make the event such a success. Special thanks to Glenda and Martin and their two ‘apprentice film makers’ Sophie and Aruna Murishwar who were volunteered by Dad to do some filming. Only two speakers did not wish to be filmed. What we have we will share with you once the film is available. But please be patient as this may take some time due to health, namely fibromyalgia. Meanwhile work is going ahead on finalising the DVDs from the 2010 conference with Prof. Choy and other key speakers. We are all still reeling from the 2011 conference and pressure of work but as soon as these are available we will let you know.

A sincere and very big thanks to the following folk in no particular order – Heather Butterick, GL Nene Valley who was OC in the speakers’ room and did a grand job of keeping everyone running on time with the help of her dear husband, Roger; Simon Stuart our techno wizard who looked after the equipment in the speakers’ room for the two days of presentations and the race night; thanks to the Wittering Freemasons – Bill, Brian, Stuart, Peter, and wives Pam and Pauline for organising the race night and tote and to Glenda and Martin who helped out on the tote. A big thanks to Lorely who picked and deliver back to the Station, speakers who came by train; Leanne Daniel GL Horndean who took copious notes of the presentations along with Denise Rhodes. Thanks to Jenny Oaks, Pauline (co GL Chichester), Glenna and Arthur who all did long stints on the front desk dealing with enquiries. A big thanks also to those who worked behind the scenes writing letters, Helen and Suzie and my gratitude must go to my family and to my dear friend, Sarah who fished me out of deep water, got me back on dry line and working once again. Without this support we would not be recalling happy moments at the conference.

THE VENUE
Thanks also to all the staff at South Downs who did a grand job – kitchen dining room, entertainments and admin – I personally did not receive one complaint. My bed was comfortable, the food was good even though I was often late and the service was excellent -some said better than a 5 star hotel. From the response on Monday morning I think most of you enjoyed the weekend.

Thanks to everyone who came and supported the conference – without you there would have been no fun, laughter and help for each other. Thanks to those fibromites who gave presentations, did workshops, signed their books. To those who gave their time selflessly to make the event happen, my personal thanks. Also our gratitude to the entertainers, speakers, therapists and Tranquility, who all helped to make the weekend a big success.

FURTHER INFORMATION
The contact details of most folks who entertained were printed in the programme. If you need information and no longer have the programme a short email with FIBCON 2011 INFORMATION in the subject will bring whatever details I have, back to you. Email me at fibrowhat@me.com.

WHERE DID THE MONEY GO?
I wish I knew – the bills seemed to be higher this year – maybe it was petrol costs, rising prices or perhaps we just wanted more this time. Who knows, but our money did not buy as much as it did last year. Apart from Labrha, the French company manufacturing Fibromyalgine, who sponsored the conference bags, there was no other sponsorship. I made at least 12 grant applications all without success – I believe this may be because we are not yet a registered charity and the effects of the current cut backs in the voluntary sector. But we are working hard to get registered. Donations or fund raising for the Folly Pogs research fund are always very welcome.

As before we begged, borrowed and stole short term, to get the show on the road, supported by the Folly Pogs (FM Philanthropists Research Fund). We had a handsome donation from Cherry Cull of Horndean, also a very respectable donation from an anonymous local fibromite. The proceeds of the race night and the raffle will be added to the research fund. I am hoping all those folks and groups who raised money for the Americans’ non-visit will agree these funds should find their way to research to help find a cure. Thanks to Marie-Caroline for her help and support and the £313 sponsorship from her 100-mile walk she has now donated to research.

We will be talking to Dr Kim Lawson, one of our keynote speakers, about research and hope in the future to sponsor some research through him. We do need to raise some mega bucks before then. We already have around 8 would-be trustees willing to help when we become a registered charity – so we live in hopes. All donations gratefully received – we all want a cure – contact me at email address below- and thanks.

2012 CONFERENCE
I said in a weak moment I could not do it again – but guess what – the conference lives on. There will be another April conference and pamper weekend in West Sussex during Easter weekend – Friday to Monday supported by the Folly Pogs and FMS SAS. Details are yet to be arranged but we only have half the accommodation, so it will be first come first booked. To stake your claim write to jeannehambleton@me.com with FibCon 2012 in the subject please.

Meanwhile take care and look after yourselves. Fibro hugs Jeanne

Still no treatment in Europe for the 14 million FMS patients trapped in pain!

From the FMS Global News Desk of Jeanne Hambleton (UK)

Press Release from ENFA – 29.04.2009

Brussels, (29.04.2009)

Last week was high on activities for the Fibromyalgia community, on one hand the European Network of Fibromyalgia Associations (ENFA) met with the European Health Commissioner Ms Androulla Vassiliou1. And on the other hand the European Medicines Agency (EMEA) gave another negative decision for a treatment for fibromyalgia in Europe2.

Ms. Pam Stewart, Vice-President of European Network of Fibromyalgia Associations (ENFA) and chairman of the trustees of Fibromyalgia Association UK, said one of the biggest challenges that the patients have been facing is the lack of officially recognised medical treatment options in the European Union.

By comparison there are three drugs in the United States of America approved by the Food and Drug Administration: Cymbalta from Eli Lilly, Lyrica from Pfizer and recently authorised Savella from Forest and Cypress (Pierre Fabre).

Last October, Cymbalta received a negative decision from the EMEA and last week was the turn of Lyrica said Ms Stewart. One dossier is still remaining to be evaluated by the EMEA: Savella. Each of these drugs has a limited success and judged alone leads to their failure to get approval.

However with a full range of treatment options, more people with fibromyalgia could have reduced levels of pain. This could enable them to embark on a management programme to significantly improve their quality of life said the Vice President.

“We are constantly hearing from people diagnosed with fibromyalgia that their doctor tells them there is no treatment because no approved guidelines or medications are available. Medical professionals that do not have time to research treatment options should have clearly signposted guidelines for effective treatment options. No one should be sentenced to a life of pain, she said.

“Patients across Europe are currently using these medicines off label. However, the European Medicines Agency told European Network of Fibromyalgia Associations that this is a common situation already faced in other disease areas such as cancer, and the situation with off label use cannot be taken into consideration in the assessment of medicines for which a marketing authorisation is sought.

“The difference with Fibromyalgia is that patients in the UK, for example, are unlikely to be prescribed any of these effective drugs because they have not been officially approved for Fibromyalgia. Patients are left with inadequate treatment options and although these drugs can be purchased over the Internet, this means their use is not monitored and people could be at the mercy of unscrupulous suppliers, which could put their lives at risk,” said Ms. Stewart.

Another example, coming from Germany, concerns the social status of patients since they are labeled as “depressive patient” for their life insurance or health insurance in order to have their drugs fully reimbursed by the National Health Insurance. In order to get any effective medicines, doctors should not diagnose fibromyalgia at all because the medicines are not indicated for fibromyalgia.

At the same time, an ENFA delegation was meeting with the European Health Commissioner Ms. Vassiliou. The meeting was only a natural step, concluding ENFA’s activities on the ‘European Institutions Fibromyalgia Awareness Campaign’ launched in 2008 on World Fibromyalgia Day.

Since the commencement of the campaign last May, with the support from 418 Members of the European Parliament, the Written Declaration on Fibromyalgia was adopted by the European Parliament in December 2008. The written declaration was necessary to raise awareness to all the European politicians from the 27 member states. It also helps create a mapping of the disease status disparity across Europe and increase awareness of better diagnosis and treatment.

“However, we realised that without any officially approved treatment options available, it was almost impossible to properly raise awareness of Fibromyalgia. The patient petition with over 27,000 signatures from all over Europe that MEP Adamou voluntarily hand delivered to the Health Commissioner, clearly demonstrates the frustration from the fibromyalgia community and strong and urgent needs to have treatment options to be officially available. The Fibromyalgia community is left with one hope to see maybe Savella drug approved before the summer. But unfortunately, the hope for a multiple choice of treatment in Europe seems to be lost.

“The European Network of Fibromyalgia Associations and all its associations have for years raised awareness on Fibromyalgia among national and European politicians, health professionals and the general public, and will keep on being active as long as it is necessary,” the Vice President.

About ENFA

ENFA is a network of patient association and support groups working in close consultation with the national association in the relevant country. Our joint missions are to conquer the myths and misunderstandings around Fibromyalgia. The network will help collectively push forward the boundaries which currently exist in understanding, experiencing and treatment of Fibromyalgia. Our main goal is to see Fibromyalgia receiving the recognition it deserves across Europe as an illness in its own right.

About Fibromyalgia

Fibromyalgia is a complex disease with chronic widespread pain as the defining symptom and various additional symptoms including fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, depression, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Fibromyalgia imposes a large economic burden on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost work days, lost income and disability payments.

In fact, a Dutch study in 2005 estimated that the average annual cost of fibromyalgia was €980 million in the Netherlands. Research in the UK has shown that diagnosis and positive management of Fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.

For more information on the European Network of Fibromyalgia Associations (ENFA) contact Ms. Pam Stewart Vice-President of ENFA Brussels@enfa-europe.eu; http://www.enfa-europe.eu.
1 On Wednesday 22 April in Strasbourg, for more information visit http://www.enfa-europe.eu; 2 On Thursday 23 April in London, for more information visit http://www.emea.europa.eu

Use of antidepressants associated with improvement in symptoms of fibromyalgia

From the Fibromyalgia News Desk of Jeanne Hambleton

The use of antidepressant medications by patients with fibromyalgia syndrome is associated with a reduction in pain, sleep disturbances and depressed mood and improvement of health-related quality of life, according to an analysis of previous studies, which is published in the January 14 issue of JAMA.

Fibromyalgia syndrome (FMS), which consists of chronic widespread pain and tenderness, with other symptoms including fatigue and sleep difficulties, has an estimated prevalence of 0.5 percent to 5.8 percent in North America and Europe. “Patients with FMS experience disability and reduced health-related quality of life (HRQOL). Fibromyalgia syndrome is also associated with high direct and indirect disease-related costs. Effective treatment of FMS is therefore necessary for medical and economic reasons,” the authors write.

Winfried Häuser, M.D., of Klinikum Saarbrücken, Saarbrücken, Germany, and colleagues conducted a meta-analysis to evaluate the effects of treatment with antidepressants on FMS-related symptoms. The researchers identified 18 randomized controlled trials, involving 1,427 participants, for inclusion in the study.

Overall, there was strong evidence for a reduction of pain, fatigue and depressed mood and improved sleep and HRQOL with the use of antidepressants by patients with FMS.

The researchers found large effect sizes of tricyclic and tetracyclic antidepressants (TCAs) for reducing pain, fatigue, and sleep disturbances; small effect sizes of selective serotonin reuptake inhibitors (SSRIs) for reducing pain; small effect sizes of serotonin and noradrenaline reuptake inhibitors (SNRIs) for reducing pain, sleep disturbances, and depressed mood; and small effect sizes of monoamine oxidase inhibitors (MAOIs) for reducing pain.

“Before treatment is initiated, [accompanying] diseases related to potential adverse effects of the drugs and patients’ preferences should be considered. Goals of pharmacological therapy should be defined (no cure, but possible symptom reduction). Since evidence for a long-term effect of antidepressants in FMS is still lacking, their effects should be re-evaluated at regular intervals to determine whether benefits outweigh adverse effects,” the authors write. “The identification of patient characteristics associated with positive and negative therapeutic outcomes are needed to better target antidepressant therapy for FMS.”

(JAMA. 2009;301[2]:198-209. http://www.jamamedia.org)
Contact: Winfried Häuser, M.D. – whaeuser@klinikum-saarbruecken.de – JAMA and Archives Journals
(http://www.eurekalert.org/pub_releases/2009-01/jaaj-uoa010809.php)