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

Study Proves Cellfood® Nutritional Supplement Effective for Symptoms of Fibromyalgia

From the Fibromyalgia News Desk of Jeanne Hambleton

Courtesy of PRWeb Press Release Newswire

Researchers at the University of Siena, Italy found CELLFOOD effective at reducing the symptoms of pain and fatigue in fibromyalgia patients who did not respond to other therapies. CELLFOOD® is a proprietary blend of oxygen and 129 minerals, amino acids, and enzymes available in over 70 countries and distributed by Lumina Health Products.
there was marked clinical improvement of Fibromyalgia’s symptomatology both on a subjective level (VAS) and on an objective level (tender point count) on treated patients.

Sarasota, Florida (PRWEB) March 11, 2009 — Fibromyalgia sufferers are likely to experience reductions in pain and fatigue when taking recommended dosages of CELLFOOD, according to research results from the University of Siena, Italy, published in the medical journal, Reumatismo.

Cellfood Oxygen Nutrients Supplement – A twelve week study involving thirty patients who did not respond to conventional therapies for fibromyalgia syndrome (FMS) found that both subjective and objective levels of pain, as well as fatigue from work and daily activities were significantly improved by the end of the study. Tender points on the body, a painful and common symptom of FMS were also noticeably reduced by CELLFOOD. Other symptoms, such as anxiety and early morning fatigue improved as well but were not statistically significant.

The study treated 21 patients with CELLFOOD and nine patients with a placebo after an initial diagnostic measurement and subjective evaluation of their FMS symptoms. The researchers reported that after 12 weeks of treatment with CELLFOOD, “there was marked clinical improvement of Fibromyalgia’s symptomatology both on a subjective level (VAS) and on an objective level (tender point count) on treated patients.” The researchers noted that this therapeutic, non-pharmacological approach could provide an important contribution in the treatment of patients with FMS. Because the patient’s tolerance to CELLFOOD was optimal, the researchers indicated that further exploration of larger dosages for a longer period of time would provide even more insights regarding the efficacy of the product.

“Over the past decade we’ve been making CELLFOOD available in North America, we’ve had many e-mails and phone calls from elated fibromyalgia sufferers who tell us that CELLFOOD has helped give them quality of life. And, now the scientific research is backing it up,” says Mark Rubin, President of Lumina Health Products, the North American distributor of CELLFOOD.

Michelle Schoffro Cook, DNM, DAc, CNC, best-selling and six time book author adds: “Many sufferers of fibromyalgia become disabled from chronic pain and fatigue, unable to work, or to enjoy life fully. It’s tremendous to know that CELLFOOD is reducing pain and fatigue among fibromyalgia sufferers, particularly in those who have not received relief from previous treatment.”

Fibromyalgia is a disorder of unknown etiology characterized by widespread pain, abnormal pain processing, sleep disturbance, fatigue and often psychological distress. People with fibromyalgia may also have other symptoms such as:

Morning stiffness
Tingling or numbness in hands and feet
Headaches, including migraines
Irritable bowel syndrome
Problems with thinking and memory (sometimes called “fibro fog”)
Painful menstrual periods and other pain syndromes

Fibromyalgia affects an estimated three to six million people in the United States. The following criteria are used to give a medical diagnosis of fibromyalgia syndrome: widespread pain in all four quadrants of the body lasting for at least three months, tenderness in at least 11 of the 18 specified tender points, generalized aches or stiffness of at least three anatomical sites for at least three months, and exclusion of other disorders that are known to cause similar symptoms.

The University of Siena is one of Italy’s oldest and most esteemed public universities, particularly known for its Schools of Medicine and Law.
Michelle Schoffro Cook, DNM, DAc, CNC, is the best-selling author of The 4-Week Ultimate Body Detox Plan, The Ultimate pH Solution and her newest book, The Life Force Diet.
For more information, visit http://www.LuminaHealth.com.
(http://www.prweb.com/releases/2009/03/prweb2218564.htm) (PRWeb Press Release Newswire)

WOMEN IN NETS CLAIMING TO BE TRAPPED IN PAIN IN 8 EUROPEAN CITIES

From the Fibromyalgia News Desk of Jeanne Hambleton

PRESS RELEASE Embargoed until 7.3.09

Brussels, (07.03.2009) – This Saturday has not only been marked by the International Women’s Day but also by the European action day on Fibromyalgia. While normal people were doing their usual Saturday’s shopping, the European Network of Fibromyalgia Associations and its Member Associations gathered together in eight European cities centres to expose their situation as women-patients suffering from fibromyalgia.

Simultaneously at 16:00 (Brussels time) in Paris, London, Amsterdam, Frankfurt, Brussels, Dublin, Milan, Lisbon and Madrid a passive demonstration took place where fibromyalgia community members trod the pavements of these cities.

The actual main issue around Fibromyalgia is that currently in Europe there is no recognized treatment whereas in the USA there are already 3 medicines available.

“This year has been declared the year against fibromyalgia by the European arm of the International Association for the Study of Pain (IASP-EFIC) and for this reason ENFA, as the European umbrella of fibromyalgia organisations wish to inform as much as possible not only diagnosed patients, but the general public, medical professionals, policy makers and politicians” says Pam Stewart, ENFA’s vice-president.

“Early diagnosis, diagnosis, treatments and information are still lacking for the estimated 14 million patients in Europe” says Robert Boelhouwer, ENFA’s president. “We have to keep on mobilizing the general public but also the politicians by having regular action days and awareness campaigns. This is the first event in 2009; the next one will take place in May on the occasion of the “International Fibromyalgia Awareness Day”, then in September and October. We will keep on fighting until we get a full and clear recognition of our disease, starting with a treatment approved for Europe,” he added.

Last December, 418 Members of the European Parliament from the 27 European countries expressed their wish to the European Commission and to the Member States to help raise awareness of the condition and facilitate access to information for health professionals and patients, by supporting European and national awareness campaigns; to encourage Member States to improve access to diagnosis and treatment; to facilitate research on fibromyalgia through the work programmes of the EU 7th Framework Programme for Research and future research programmes; and finally to facilitate the development of programmes for collecting data on fibromyalgia. The European Parliament has been the first European Institution to answer the call of the fibromyalgia community. The European Commission has been also recently been contacted but no reaction has came from them yet.

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. These include fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, 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. Some scientists believe that there is an abnormality in how the body responds to pain, and particularly a heightened sensitivity to stimuli.

Fibromyalgia imposes large economic burdens 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. Research in the UK has shown that diagnosis and positive management of Fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.

Contact:Mr. Robert Boelhouwer President European Network of Fibromyalgia Associations (ENFA)
ENFA contact@enfa-europe.eu – http://www.enfa-europe.eu

EU COMMISSIONER FOR HEALTH ANSWERS QUESTIONS ON FIBROMYALGIA

From the News Desk of Jeanne Hambleton

 

I have just received the following Q&A information. While this is not a recent conversation, it is evidence that fibromyalgia is being discussed in the Europe.

 

EU QUESTIONS AND ANSWERS

 

On 28 October 2008, European Commissioner for Health, Ms Androulla Vassiliou answered questions put to her by EU member Mr. Florin Popa  (Romania) on EU recognition for fibromyalgia, the need for treatments in Europe for fibromyalgia and the need for more data from research. 

 

QUESTION:

Can the Commission state its position on fibromyalgia, as the WHO did in 1992? Does the Commission think that there is a need for action at European level, in the interests of European citizens, in order to avoid the disparities in diagnoses and treatment that exist in all Member States?

ANSWER:

In accordance with the Treaties, the benefits that Member States provide under their health systems and the conditions applicable are up to Member States to determine, including with regard to the benefits and treatments provided for specific conditions such as fibromyalgia.

QUESTION:

Can the Commission comment on the lack of availability of approved treatments in the EU for fibromyalgia? Millions of people suffering from fibromyalgia across Europe do not have the same access to medicines to treat fibromyalgia as in the US. Following its October meeting, the Committee for Medicinal Products for Human Use (CHMP) took a negative decision regarding the first medicine for the treatment of fibromyalgia in Europe. Patients across Europe were disappointed to hear that a license to approve a drug for fibromyalgia had not been granted. Yet the reality is that in Europe patients are taking medicines off-label. What solution does the Commission see for this specific problem?

ANSWER:

The fact that the Committee for Medicinal Products for Human Use (CHMP) proposed a negative decision regarding the market authorisation of a medicine for the treatment of fibromyalgia in Europe does not preclude future authorisation of other proprietary medicines that meet the safety, efficacy and quality requirements laid down in EU legislation.

QUESTION:

In order to obtain a treatment for fibromyalgia, there is a need to collect EU data. Can the Commission help collect and receive data and also help with the coordination of national expertise?

ANSWER:

The Commission already pointed out that under the current health programme 2008‑13 a proposal for surveillance of and information on musculoskeletal diseases, including fibromyalgia, has been selected and a contract is under negotiation. This project, if the contract can finally be successfully concluded, is expected to contribute to improvement of European data on incidence and prevalence of fibromyalgia as well as information on best practice of diagnosis, treatment and care.

BACKGROUND

 

European Commissioner for Health, Ms Androulla Vassiliou on her website said she was honored to have the opportunity to work on issues which  ‘intimately touches EU citizens’ everyday lives”.

 

She writes, “As Commissioner for Health, my portfolio covers three broad areas: public health, feed and food safety and animal health and welfare. Many challenges lie ahead. We need, for example to improve the legal certainty on patients’ rights in cross border health care, to contribute to reducing organ donation shortages, to help combat rare disease in the field of public health or to implement a comprehensive strategy on animal health. 

I know I can count on the dedication of my services working in the Directorate-General for Health and Consumers and I look forward to a close co-operation with national authorities in the Member States. 
On my side, I will put all my energy into addressing these important issues. 
 Working on health at EU level can bring about results that can not so easily be achieved by Member States working alone.”

 

(http://ec.europa.eu/commission_barroso/vassiliou/index_en.htm)

 

There is a contact box on this website if you have any questions. I could find no references to fibromyalgia. Might have been fibro fog on my part? JH

 

Mr. Florin Popa, EU Member (Romania) was one of the five MEPs active in health issues at the European Parliament, who helped to initiate the Written Declaration relating to fibromyalgia in conjunction with the European Networks of Fibromyalgia Associations.

 

EUROPEAN NETWORK of FIBROMYALGIA ASSOCIATIONS

Press Release


Members of the European Parliament (MEPs) adopt written declaration 69/2008 on fibromyalgia initiated by five deputies and the European Network of Fibromyalgia Associations (ENFA).

Brussels 16.12.2008 – Written Declaration 69/2008 on fibromyalgia has been a success in the European Parliament by finding the necessary quorum of signatories of 393 deputies giving their support. The Written Declaration was initiated by five key MEPs active on health at the European Parliament: Mr. Adamou, Ms. Brepoels, Ms. Dickuté, Mr. Popa and Ms. Sinnott. These MEPs decided to launch the declaration during the celebratory meeting of the 1st European Fibromyalgia Awareness Day in May 2008, organized by ENFA.

The Written Declaration is calling on the European Union to recognize fibromyalgia in Europe as a disease, as WHO did in 1992. It is estimated that 14 million people in Europe suffer from fibromyalgia and the condition is more prevalent with women (87% of total prevalence).

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. These include 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. Some scientists believe that there is an abnormality in how the body responds to pain, and particularly a heightened sensitivity to stimuli.

 

Fibromyalgia imposes large economic burdens 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 workdays, lost income and disability payments.

 

Research in the UK has shown that diagnosis and positive management of fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.

Thus, the European Parliament is calling through this declaration, for the European Commission and the Council, to help raise awareness of the condition and facilitate access to information for health professionals and patients, by supporting European and national awareness campaigns; to encourage Member States to improve access to diagnosis and treatment; to facilitate research on fibromyalgia through the work programmes of the EU 7th Framework Programme for Research and future research programmes; and finally to facilitate the development of programmes for collecting data on fibromyalgia.

 

Educating healthcare professionals, patients and the public to promote better understanding and management of fibromyalgia will benefit patients, healthcare providers and the society. A Written Declaration is a text of up to 200 words on a matter falling within the European Union’s sphere of activities. MEPs can use them in order to launch or relaunch a debate on a subject that comes within the EU’s remit. At the end of the lapsing date (3 months after its launch on 1 September for the declaration 69/2008, the declaration is forwarded to the institutions named in the text, together with the names of the signatories.

 

Thank You MEP’s, Thank you fibromyalgia supporters!

The written declaration 69/2008 about fibromyalgia reached the quotum on December16th 2008, to be accepted by the European Parliament. This acceptance means that the first but important step on a long way to get fibromyalgia recognised in all the European countries, has been taken.

The awareness of the condition of fibromyalgia by the members of the European Parliament could be an example for national politicians for actively addressing their national governments. ENFA and their members are more than willing to support such activities.

 

 

 

 

 

 

 

FIBROMYALGIA: FIRST STEP FORWARD IS EU RECOGNITION SAY MEPS

FROM THE DESK of Jeanne Hambleton – October 27 2008

Just imagine what would happen if the word ‘fibromyalgia’ was casually dropped into conversation. Chances are there would be a lot of blank faces staring back. So just think what its like for the 14 million people in the EU, whose condition, fibromyalgia, is at the moment not even recognised as a disease.

It is hoped by sufferers that this is all set to change, as Members of the European Parliament sign up to a petition for recognition of fibromyalgia across the European Union. Even though the World Health Organisation has formally recognised the condition – whose symptoms includes chronic musculoskeletal aches, pain and stiffness in addition to soft tissue tenderness, general fatigue and sleep disturbances – since 1992, fibromyalgia is not yet recognised at an EU level.

Euro-MP for the North East Fiona Hall warns that this lack of recognition not only hinders a formal diagnosis and treatment of the condition, but also limits research into the causes of the disease and new treatment methods.

Says Fiona,

“Recognising fibromyalgia as a disease is the first step towards making life that little bit easier for those suffering from the condition. A formal recognition would also provide comfort to those sufferers, who have for many years, been met with blank stares when trying to discuss the condition.

“Hand in hand with this, there is still little understanding of the disease in terms of both cure and effective treatment available at the moment. More research facilities are needed to try to determine the cause and effect of fibromyalgia and I am confident that putting a name to the disease would allow this to happen.

“A formal recognition of fibromyalgia could also make it easier for patients to apply for Disability Living Allowance. Holding a regular job is hard for people suffering from the condition. Fibromyalgia is a real disease and should be treated as such.”

UK sufferers such as Gemma Rouston, who was diagnosed in 2007, support the MEP’s actions and calls for more widespread understanding of the disease.

Gemma, who is membership secretary of the Liberal Democrat Disability Association (LDDA) said,

“It was such a relief to be told that I was not imagining things. However, I was not given any real idea of how to cope with the condition apart from taking painkillers and exercise.

“It is very difficult to cope with fibromyalgia; it varies everyday and every hour. I am in my early forties, and have to use a walking stick. I have two disabled children, who I am supposed to care for, but they look after me.

“Even if you get a formal diagnosis, the Department of Work and Pensions are reluctant to help out financially. Fibromyalgia makes it difficult to do any work on a regular basis. No employer will be willing to be as flexible as I need them to be, especially the way that things are at the moment.”

“Having fibromyalgia means that my family are restricted in what we do and where we go. I cannot really plan what I will do each day, even if it is just myself.”

Ends

Lucy Towers

Press Officer to Fiona Hall MEP
Regional Media Co-ordinator for the Liberal Democrats in the North East

55a Old Elvet
Durham
DH1 3HN
0191 383 2269 / 07776 256333
lucy@fionahallmep.co.uk

http://www.fionahall.org.uk

NEW DATA ON THERAPIES FOR PAIN AND INFLAMMATION FROM PFIZER

By Jeanne Hambleton © Fibromite NFA Leader Against Pain

While I am a great believer in positive thinking, I have to accept that medication can be the only way that allows some people to live with pain and this impossible invisible condition called fibromyalgia. From this point of view I must say I am pleased that the drug companies are continuing to find ways of easing our pain and hopefully one day will find a cure.
This morning I received a press release from Pfizer who are working to help those of us with fibromyalgia and arthritic problems. I wanted to share this with you and the full report is listed below.

Having read this one of my greatest hopes is that the UK medical authorities will, in the near future, give its blessing to Lyrica, Cymbalata and now Esreboxetine.

Let us hope if these new drugs are approved in the UK that there will be no ‘post code lottery’ by the NHS for the prescription of these medications. Currently British fibromites are victims of the lack of approval of any specific fibromyalgia drugs. While American patients are able to gain relief from the new drugs, it seems the UK fibromites must suffer in silence.

In recent years I have read and signed numerous epetitions appealing to the Prime Minister Gordon Brown to bring some relief to those of us with fibromyalgia. The epetitions have asked for research, better education of doctors and specialists, fibromyalgia clinics and much more – but all have met with lame excuses. This has nothing to do with the current financial crisis. We have been writing to Prime Ministers – Tony Blair and Gordon Brown -for years. What do we have to do to get attention – camp out in our wheelchairs outside the Houses of Parliament? We might get more press coverage that way!

I am not surprised that Guy Fawkes chose to blow up the Houses of Parliament on November 5 if this was the only way he could get the attention of those working inside that building. Maybe we need a fictional Gun Powder Plot to enlighten the Government and spur the MPs into allocating funds for research to find a cure for fibromyalgia. But it does appear that nothing seems to stir those in the ‘corridors of power’.

A little correction here – according to Hansard and TheyWorkforYou on October 14 Dr John Pugh MP (Shadow Minister, Treasury; Southport, Liberal Democrat) is reported to have said, “…I was recently approached by someone in my constituency who suffered from a disease called Fibromyalgia, which had to be explained to me. That person found that there was wholesale ignorance of the disease in all parts of the NHS and many parts had been accessed about the condition.”

Hooray for John Pugh. Shall we all write to our MPs and talk about the ‘F’ word? You do know I mean F for fibromyalgia, I hope! I am not into writing about politics but for goodness sake if someone wants to win the next election they should become our champion – do something about the plight and despair of the fibromites. That should get them at least 2 million votes plus their families and friends. I wonder why are we treated as second class citizens? Just because we have an invisible disability it does not mean we have no feelings and do not deserve some respect. What do you say?

As a matter of interest something like 10 years ago the public were ignorant about ME. Today everyone has heard of it? We must spread the ‘F’ word – fibromyalgia. I have banned the other ‘F’ word in my house. Now we all say ‘fibromyalgia’ when we lose our temper and burst into fits of laughter.

Results from Clinical Trials Show Promise for Innovative Therapies in Rheumatoid Arthritis and Osteoarthritis Pain and Fibromyalgia

SAN FRANCISCO–(BUSINESS WIRE)–Pfizer will present data on three investigational compounds that represent potential new mechanisms for targeting pain and inflammation. These data will highlight tanezumab, a molecule designed to target nerve growth factor, a key pain mediator; CP-690,550, a JAK-inhibitor that suppresses immune-related inflammatory response; and esreboxetine, a highly-selective norepinephrine reuptake inhibitor which plays a role in controlling the activity of this important neurotransmitter. These data will be presented at the 2008 American College of Rheumatology Scientific Meeting in San Francisco, California.

“Pfizer has an established track record of bringing innovative therapies to patients suffering with pain and inflammation,” said Martin Mackay, Ph.D., president, Pfizer Global Research and Development. “Data to be presented at ACR confirm our clinical approaches in developing these three compounds – CP-690,550, esreboxetine and tanezumab – as potential new medicines to provide relief from these serious medical conditions.”

Fibromyalgia

Pfizer is a pioneer in the study of fibromyalgia, investing many years of research into treatment options for this complex pain condition. In June 2007, Lyrica (pregabalin) CV became the first FDA-approved treatment for the management of fibromyalgia. Data supporting that approval showed Lyrica patients experienced significant reduction in pain as early as week one in some patients.
While widespread pain is the cornerstone of fibromyalgia, the condition is also characterized by other hallmark symptoms such as fatigue and difficulty concentrating.

Data presented at ACR will highlight the results of a phase 2 proof of concept study with esreboxetine, a highly selective norepinephrine reuptake inhibitor in a fibromyalgia population.
Data from this study showed that esreboxetine may be effective in relieving in key fibromyalgia symptoms, including pain, function and fatigue and was generally well tolerated. In the study, 43 percent of patients receiving esreboxetine reported their condition was much improved or very much improved as compared to 23 percent of placebo-treated patients.

The most common side effects compared to placebo were constipation, insomnia, dry mouth, headache and nausea. The proportion of patients who discontinued as a result of adverse events was 8.2 percent in the esreboxetine group and 2.3 percent in the placebo treatment group.
Fibromyalgia has been recognized by the professional community for over 30 years as a common, chronic widespread pain condition and is now thought to affect up to six million Americans. Recent evidence suggests a neurological basis to fibromyalgia, as demonstrated by brain scans and altered levels of certain neurotransmitters.

Rheumatoid Arthritis

Data is being presented from several clinical trials studying CP-690,550, an oral medication that inhibits the Janus Kinase enzyme (JAK). This enzyme plays a major role in controlling the activation and proliferation of white blood cells, key elements of the immune system, which play a major role in rheumatoid arthritis (RA). CP-690,550 has shown encouraging results for the treatment of rheumatoid arthritis at doses that don’t appear to be associated with excessive immune suppression.

Investigators will present interim results from a late-breaking Phase 2B study evaluating the activity of CP-690,550 in combination with methotrexate, the most commonly-used RA treatment. Approximately 60 percent of patients on doses at or above 3 mg of CP-690,550 responded to treatment as compared to 37.7 percent on placebo. These data confirm and extend the promising data seen in an earlier phase 2A study to this longer, 12 week study, and to patients who are already taking methotrexate to treat their rheumatoid arthritis.

Also being presented is a pharmacokinetic drug interaction study which showed that CP-690,550 and methotrexate can be co-administered without dose adjustment. In addition, preliminary results from an open label extension study will be presented.

In these studies, the most commonly reported adverse events were nausea, headache, dizziness, disorientation, hot flushes, urinary tract infections, diarrhea and liver function tests. Larger and longer phase 3 studies are expected to start in 2009 to help further define the benefits and risks of CP-690,550 as a potential treatment for rheumatoid arthritis.

According to the Arthritis Foundation, 1.3 million Americans live with rheumatoid arthritis, a type of arthritis that can be severe, debilitating, deforming and even shorten life.

Osteoarthritis Pain

Pfizer continues to research new ways of treating osteoarthritis pain. Two studies to be presented highlight a new compound in development and new data for Celebrex (celecoxib) in the treatment of osteoarthritis pain.

Results from a Phase 2 study exploring the safety and efficacy of tanezumab, a novel biologic designed to block nerve growth factor, show that treatment once every eight weeks may significantly decrease pain in patients suffering from moderate to severe osteoarthritis pain in the knee. In the trial, approximately 75 percent of patients in both the tanezumab 100 and 200 μg/kg treatment groups experienced a 50 percent reduction in knee pain as compared to 26 percent of patients in the placebo group. In the study, the most common adverse events associated with tanezumab include headache, upper respiratory tract infection, paresthesia (abnormal sensations), hypoesthesia (decreased sensations) and arthralgia (joint aches).

Another late-breaking study evaluated continuous use of daily Celebrex treatment over a 22-week period compared to intermittent use of the medicine in preventing spontaneous OA flares. The study showed that continuous use resulted in 42 percent fewer OA flare episodes than the intermittent use. The results from the study also demonstrated that there were no significant differences in overall adverse events between the intermittent and continuous use groups.

According to the Arthritis Foundation, osteoarthritis affects 27 million Americans. Recent data show that one in two Americans are at risk for knee osteoarthritis over their lifetime. Loss of joint function as a result of osteoarthritis is a major cause of work disability.

About Celebrex

CELEBREX is indicated for the relief of the signs and symptoms of osteoarthritis, rheumatoid arthritis in adults and ankylosing spondylitis, and for the management of acute pain in adults.

Cardiovascular Risk
All prescription NSAIDS, including CELEBREX, may cause an increased risk of serious cardiovascular (CV) thrombotic events, myocardial infarction, and stroke, which can be fatal. All NSAIDs may have a similar risk. This risk may increase with duration of use. Patients with CV disease or risk factors for CV disease may be at greater risk.

All prescription NSAIDs, including CELEBREX, are contraindicated for the treatment of perioperative pain in coronary artery bypass graft surgery.

Gastrointestinal Risk

All prescription NSAIDs, including CELEBREX, cause an increased risk of serious gastrointestinal adverse events including bleeding, ulceration, and perforation of the stomach or intestines, which can be fatal. These events can occur at any time during use and without warning symptoms. Elderly patients are at greater risk for serious gastrointestinal events.

About Lyrica

LYRICA is indicated for the management of Fibromyalgia, neuropathic pain associated with Diabetic Peripheral Neuropathy, Postherpetic Neuralgia, and as adjunctive therapy for adults with Partial Onset Seizures. There have been post-marketing reports of angioedema and hypersensitivity. Treatment with Lyrica may cause dizziness, somnolence, peripheral edema or blurred vision. Other most common adverse events include dry mouth, weight gain, constipation, euphoric mood, balance disorder, increased appetite and thinking abnormally.

About Pfizer’s Investor Briefing at ACR (American College of Rheumatology)
On Tuesday, October 28 at 6:00 p.m. PCT, Pfizer will host a briefing for analysts and investors to review data presented at the meeting on candidates in Pfizer’s pain and inflammation portfolio

[Perceived pain and weather changes in rheumatic patients]

[Article in Portuguese]

Miranda LC, Parente M, Silva C, Clemente-Coelho P, Santos H, Cortes S, Medeiros D, Ribeiro JS, Barcelos F, Sousa M, Miguel C, Figueiredo R, Mediavilla M, Simões E, Silva M, Patto JV, Madeira H, Ferreira J, Micaelo M, Leitão R, Las V, Faustino A, Teixeira A.
Instituto Português de Reumatologia. luis.miranda@ipr.pt

INTRODUCTION: Rheumatic patients with chronic pain describe in a vivid way the influence of climate on pain and disease activity. Several studies seem to confirm this association.

OBJECTIVES: To evaluate and compare in a population of rheumatic patients the perceived influence of weather changes on pain and disease activity.

METHODS: This is a retrospective cross-sectional study. For three weeks an assisted self-reported questionnaire with nine dimensions and a VAS pain scale was performed on consecutive out-patients in our clinic.

RESULTS: 955 patients 787 female 168 male mean age 57.9 years with several rheumatologic diagnosis were evaluated. Overall 70 of the patients believed that the weather influenced their disease and 40 believed that the influence was high. Morning stiffness was influenced in 54 high influenced in 34 . Autumn and Winter were the most influential periods as well as humidity 67 and low temperatures 59 .

CONCLUSION: In our study as well as in literature we found that a high percentage of patients 70 perceived that weather conditions influenced their pain and disease. Fibromyalgia patients seemed to be strongly influenced by weather changes. Our study confirms that patients perception on the influence of climate on pain and therefore their disease is an important clinical factor and it should be considered when evaluating rheumatic patients.

PMID: 18159202 [PubMed - in process]

Source

FMS Global News

Fibrohugs Support

Tenderpoints Newsletter

GROWING SUPPORT FOR FIBROMITE AHEAD OF HER TIME

by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate

You may remember the story about Linda Allen, a UK fibromite who in spite of being severely disabled with this invisible disability has been raising FMS awareness among medical students. Her gracious offer to help anyone willing to follow her example and spread the word has resulted in a flurry of emails, mostly from the USA and Canada.

While Linda and I are both willing to help, advise and encourage anyone from anywhere to pick up the gauntlet and run with it by talking to medical students, it is surprising that so few UK sufferers have written. It is here that we believe many GPs are still blinkered as far as diagnosing fibromyalgia is concerned.

For some long time those with this awful syndrome have been telling me that their doctor suggests it is all in their head. Trust me I am a fibromite – you are not imagining the aches, pains, chronic fatigue, sleeplessness, cognitive problems and many of the other nasties that cohabit with fibromyalgia. These ARE the symptoms.

All this time I have been thinking that in Canada and the USA, where there are so many knowledgeable experts in this field, fibromites were being recognised and diagnosed far more quickly than the years it takes here in the UK.

The moral behind this thinking is, we have a huge worldwide job to raise awareness about fibromyalgia, not only in the UK but just about everywhere. With this is mind it is even more important that you contact your local health authority or training hospital and offer to be interviewed by medical students and answer questions about your fibromyalgia and any other dispositions you may have living with your FMS. I hope they will jump at the opportunity. If they do not, tell us and we will name and shame them.

I often hear fibromites say, “It is so good to be able to share my problems, pains and concerns with someone,” – here is the golden opportunity – and you can talk about yourself and your health and you could be helping to find cure. Some of those young doctors may decide to specialise in this field. Whatever they do they will have an inside knowledge of fibromyalgia and be able to recognise FMS albeit in their own surgery, in accident and emergency clinic, or a hospital ward.

If you can do this it would be a giant step for fibromyalgia and would encourage more research as the world hears about the pain we suffer. It really is up to you – Linda and I cannot do it alone.

LINDA’S ANSWERS

Linda has asked me to thank everyone who has written to her like most families with young children she has struggling to get ready for Christmas with all the trimmings to delight her young son. Linda is making a great effort to reply to you as soon as she can.

We are delighted with the support so far and hope details of these emails will encourage you to go further with raising awareness.

Jane wrote, “One minute you are pleased that there is someone out there that has fibro then you feel bad that someone must hurt like you do”. 

Bambi sent an email saying, “You are my inspiration! I just read about you in an email I receive from Tenderpoints. I meant what I said.”

Bambi who lives in the States and suffers with fibromyalgia, rheumatoid arthritis, Lupus, chronic pain syndrome, and has undergone a number of operations, is taking “a variety of med’s and still going through the motions of trying to find what works best for me.” She writes about her journey through medications and diagnosis leading to the sad and frustrating times that so many FM sufferers go through.

Regardless of her pain she writes, “When I was reading about you, all I kept thinking was that I’ve found my mentor! You see, I am a 44 year old, mother of 2, wife of 22 yrs……. for too many years I have been battling the stigma’s of living with chronic pain. I won’t go into an entire boring full biography about myself! Let me just tell you briefly, I’m an ex-dancer…jazz, ballet, that kind of dancer! HA!…..most people assume with a name like ‘Bambi’, it’s another kind of dance I used to do!   I’m a freelance artist, who on a good day is lucky enough to work on sketching, painting, or some kind of inspiration I may have. I have a positive outlook the majority of the time.

“I say it this way because I feel it’s important to allow yourself to have those days that are bad, let your body heal itself, rest, etc. We have earned the right to every now and then have a little ‘bitch’ session. I think it is healthy to vent every now and then! I also feel though it is our fault we have what we have, we have to learn to accept what we can’t help, (not give into it though!) It is not anyone else’s fault that we feel bad, so why should they have to suffer too. I try to keep a good sense of humor, a smile even when I hurt….I can be in pain but still be glad I have my family.

(Hi Bambi I am the writer with FMS and it is not your fault. It is now thought to be genetic and if you ask your parents and grand parents you may find some have suffered very bad arthritis, rheumatism or fibrositis. If we have the gene it only takes a trauma or stress for an A type personality – workaholic – to trigger the fibromyalgia. I write this as a patient with no medical training, but this is what I have heard from medical experts. However I do agree you should not take your suffering out on other people and a positive outlook is so very important. Jeanne)

“Anyway, my point is that, through out this entire “journey” of chronic pain, I figured there is someway I can help, so other people don’t have to go through what I have had to endure! I admire what you and your Doctor are doing and would love to do the same!….I know, I apologize, I could have said this at the beginning, in one sentence!”
Bambi signed her email with “peace, laughter & miracles”.

Linda told her, “You have to have a sense of humour to survive being fibromyalgic…. life is for living is what I say and I refuse to sit in a chair and rock for the next 50 years!! I am not into feeling sorry for myself at all. It is counter productive and I am with you on the positive attitude thing, you have got to have this or you will go under. So you sound like an ideal candidate for doing what I am doing, chatting to medical students on an informal basis and educating them about ourselves, our condition and the whole shebang we go through for a diagnosis, treatment, support and help. Think about it, you’d be fab!!”

Catherine from somewhere in New York who read Linda’s story in Tenderpoints (from Fibrohugs) thanked her so very much for what she is doing for all FMS patients around the world.

She wrote, “I see a rheumatologist at a teaching hospital here in upstate New York, and I think I shall print this for him.  He always wants to learn and I wonder if I would ever have your strength.  Even if I didn’t, your story may be just what I need.”
Catherine signs herself a partner in FMS/CFIDS.

Karen has had FMS for seven years and writes, “When I read about what your doing, I thought that this lady is doing exactly what I have been wanting to do for years now. And I go for treatment for the perfect place for it. That is Oklahoma University Research Hospital. We call it OU for short. But my thinking has always been that this is such a complex disease that you would have to be a teacher just to discuss it, because 15 minutes with your GP just doesn’t get it.

“And only someone with this disease can tell you in detail anything about it and it takes a long time to do that because there is so much to tell. I would love to share my knowledge with some soon to be Doctors. This is where I know you will understand that we know a lot more than they do about FMS because we were forced to learn about what was wrong with us because nobody could tell us. All I ever heard was, ‘I am sorry for you but I can’t help you and good luck. Hope you don’t end up in a wheel chair.’

“I have never written to anybody else that has this disease, but your story was the one that turned on the light. I hope to hear from you, God Bless You.”

Mary who works in the medical profession in the States said she was given news of Linda’s story by a holistic nurse who has been helping her with pain control.
Diagnosed with fibromyalgia after many years of ‘non-diagnoses’ she said the problem was not only an unawareness on the physicians part, but her own unwillingness to accept it because of the attitudes I have encountered for quite some time of the doctors who label FMS as a non-existent disorder.”

Mary suggests these doctors think fibromyalgia is something, “We give patients to pacify them when they need a diagnosis”. In other words – for all the hypochondriacs out there.

“It angers me to think about it now, because these physicians have labeled me as such and put me on anti-depressants. Now I hear behind my back from their nurses and assistants that they diagnose fibromyalgia but don’t believe it,” she said adding she was frustrated and disillusioned with medicine.

Linda suggests the physician “desperately need educating into the severity of the condition you deal with 24/7. I could send you some information specifically for doctors to print off if you like? Maybe it would give them a kick up the butt? It couldn’t hurt to try eh?”

Joan from Canada said she could relate to Linda’s fibromyalgia and back problems. She suggests, “I have a specialist here in Toronto who insists fibro is related to disruption of the discs in the back and neck. Certainly the activity and especially horseback riding would contribute to your fibro. I have been on long term disability for 12 years now and everything she has directed me to do has been right. We do walk a very fine line in fibro. If we do too much we will relapse. 

“I admire the work you are doing in educating young would-be doctors and students. It is something I have wanted to do for a long, long time. I just did not know quite how to get started. 

“I felt such a pull in my heart when I read your bio, I just wanted to share with you what I believe has helped me.  Maybe it will help you too! We are the same age. Too young to let life pass us by!” said Joan.

Gloria who I think is also from the States offered congratulations to Linda for stepping up and adds, “I, like you, have had fibromyalgia since about the 1980′s, maybe even longer.  I was (and still am) very active, although I tire easily.  The specialty doctor that I saw at that time discovered my “trigger points” but he did not have a name for the illness.  Unfortunately, my regular GP was not the greatest.  I had a terrible flare-up about 7 or 8 years ago.  I went to my GP with a list of my symptoms.  He looked at the list, looked at me and told me that “someone who writes a list like this is mental.”  This was someone that I trusted my health with for over forty years.  I quickly changed physicians.  I started with an internist about a month later, gave the same list to him.  He took x-rays and blood work, sat for an hour asking me questions and told me to return in three weeks.  When I returned, he had all of the test results in hand.  We talked some more and he mentioned “myalgia.”  I asked him if he said fibromyalgia.  He said, “No, do you think you have that?”  I said I don’t know, but I had just heard of it.  He tested the trigger points and diagnosed me that day with fibromyalgia.  It has been a blessing to find a doctor that listens and is empathetic to the pain that FMS involves. I live with pain on a daily basis and some days are worse/better than others.”

This is just another story which shows just how important it is to educate the medical students and the young doctors who are willing to listen.

Jackie has such empathy with Linda she suggests, “I felt as if I were reading my life and medical condition on the page.  I have written to the FFC here in the states but have gotten no reply as of yet.  They have several centers here in the US but none are very close to me and you have to do your first visit in person, after that they do something either thru mail or something.  But it’s too hard for me to travel, as you probably know. I think my fibro was partially caused by having rheumatic fever twice as a child.  In my teens I had great pain, then they called ‘growing pains’. 

“I like you was active even after diagnosis until I just could not do it anymore.  It hurts so bad emotionally not to be able to do what I used to do. 

“In the past my son in law said that my house was so clean you could eat off the floors.  I am not able to do that anymore.  Nor do the things I want to do. And I agree with you that a loss can cause a real fibro flare, because I lost my youngest grandson age 16 in June.  The only way I can survive that is knowing that he is with God.

“Thank you so much for your article.  Just having someone out there that I can  “cry” to means a lot. Now I have to go, my back is hurting so bad. Love. A sister in fibro,”

Brenda who I think is from California (emails give little away) wrote and said,
“Thank you for your story particularly the “letter to normals” that I have sent this on to friends and family as it sums up how I feel. I would like to help spread the word. What can I do to help?”

Although Brenda believes her GP will not be very helpful she told Linda, “I do have an appointment with my rheumatologist in January so will ask her if I can talk to med students.”

Brenda who labels FMS as ‘the beast’, tells Linda. “It is very difficult here to get anything prescribed for pain as people have a tendency to sue their doctor if they get addicted to the drug. I had to give my GP a letter promising him not to sue him so he would give me a script for valium so I could sleep at night as the flexeril was no longer working. Anyway I am taking 4mg at night and it has helped tremendously so far. But I am stuck with over the counter pain killers which on bad days just aren’t effective. I have bought a couple of books on fibromyagia recently and it seems there is more research money being invested as FMS is on the rise.”

Encouraging Brenda to take up the challenge Linda replied, “I started speaking to medical students about our much misunderstood condition as they need to do ‘practice consultations’ as part of their training and speak to people who have a chronic pain condition.”

Betty who wrote to Linda about specific enzyme based natural medication which had worked for her own for back pains, added, “Today’s doctors still have no answers as I have fibromyalgia and chronic fatigue plus the latest visit to the doctor has her looking at something called Polymyalgia. I think that is what she called it. The only thing that helps that is Prednisone and I refuse to go on steroids, so I’m hoping the blood tests come back negative for that condition. Take care… and keep the faith.”

Replying Linda thanked Betty and is humbled by her kind words. She added the message “reaffirms my faith in humanity and for that I thank you from the bottom of my heart”.

Having invited the world to keep in touch with us, it occurs to me that as fibromyalgia fighters we should perhaps come together as a VIRTUAL FIBROMYALGIA AWARENESS GROUP.

This would allow us all to enjoy the successes of others and help with the few disappointments, if any, of trying to raise awareness about this rotten invisible disability. We will protect your privacy and will not divulge or print anything other than your first name and maybe the country in which you live…unless you instruct us otherwise or include your own email in the text.

If there is enough support for the idea we thought that for membership of our elite VFAG you should have FMS, CFS/ME or be a carer for someone with these disabilities. We will do our best to print your stories – maybe not always in full and will reserve the right to edit anything which may be deemed as offensive or likely to have any legal connotation.

I would ask you to send me your emails with information your endeavours to raise awareness with medical students or doctors, or in any other way, highlighting any publicity you have managed to achieve, with copies to both Linda and I.

We hope you will share your triumphs with others and we will ‘move mountains’ and raise awareness. With enough support we will start our own weblog where you will be published and able to tell our friends.

We are depending on you. Please email me at jeannehambleton@mac.com and Linda at lindajaneallen@hotmail.co.uk and with your success stories. You can also find me on
http://jeannehambleton77.wordpress.com

Take care. Keep well and go to it. Jeanne

FMS Global News

Fibrohugs Support

Tenderpoints Newsletter

Detroits Best Music

THE FIBROMITE WHO CRIES

by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate

“It breaks my heart when she cries……” This is the story of Ronald J. Waller, who wrote a touching essay about his wife’s fibromyalgia. Called “She Cries” that can be found with links to his other works on http://rjswritingloft.com together.

Ronald wrote to me saying, “I took on the project, as my wife, Carolyn, suffers from this condition, in the hope that it would help to raise awareness in the arena of fibromyalgia and the silent destruction this demon seeks to inflict upon all who are in it’s grip.”

Ronald has written “She Cries” adding that watching “My best friend, my wife, suffer from this condition compels me to write, inform and continue to learn more about this Demon who not only invades Carolyn’s life but also has affected all who are close to her.

“I am honored and humbled that you want to use these works in your endeavors to educate and inform the medical arena; I never thought my writing would reach so many people on this kind of scale and I could not be more pleased at learning about your efforts. I applaud your efforts and commitment to seeking a better life for those who suffer from Fibromyalgia. I hope we can continue to work together to bring the demon, fibromyalgia, to its knees.”

Ronald’s website questions what is fibromyalgia, outlines the symptoms and discusses the pain which knows no boundaries. He describes Carolyn’s pain in the legs as similar to “burning hot grease” adding even the sheets on the bed leaves her purple with irritation.

He said friends had abandoned her and the common choice of words is, “It’s all in her head”. Doctors shake their heads and wonder what to do next, says Ronald.

Sleepless nights and fibro fog are commonplace. To add to Carolyn’s condition she has endured numerous operations on her back, wrist and knee “not to mention the Mollaret’s Meningitis that she suffered from while in the Army”.

Ronald adds,” To know Carolyn Waller, however, you would not know she suffers these multiple medical issues at first glance. Always quick to smile, always ready to listen to another’s problems, always there to tell that joke, placed just right, to put another at ease. I continue to be amazed at her strength and her courage; it remains an honor to be a part of my wife’s life, and a privilege to be allowed in her inner circle to help as I can.

“Carolyn has been my friend when none other could be found; my supporter as I pursue my dreams as a writer; my guide as I overcome my own demons. This veteran (both from the service and from the battles she wages currently) never fails to leave another better off for having come across her path. I know this as personal fact. I am constantly amazed and humbled by the gift of her love and the generosity she freely gives to others. Maybe this is her best weapon in her fight with FMS.  Fibromyalgia. Have you heard of it? It breaks my heart when she cries….”

A dedicated couple Carolyn describes Ronald as the best husband in the world although he himself is not a well man. He suffers from post concussion head aches, and has severe pain in his joints in his legs and feet from extreme laxtivity, his joints are giving away it is hereditary.  This has left him using a cane inside the house like me and we both use electric wheelchairs when we leave our apartment.  As a matter of fact they are our only means of transportation.  He is on a mess of medications and it is hard for him to write now, but you all have really changed him and made him feel really good and useful.
 
“We spend every minute of every day together and very rarely have words against each other.  I love him with all my heart and was so lucky to find him, wrote Carolyn. At a time of the year when we send  Christmas cards to acquaintances and often sign them ’with love’, I think this story illustrates true love. I wish them both every happiness for the rest of their lives.

You may reach Carolyn at Carolyn_n_ny@yahoo.com and Ronald at rj@rjswritingloft.com if you have any questions.
The full transcript of this dedication can be found on the Internet under http://www.rjswritingloft.com.

Ronald J. Waller is a published disabled writer whose work can be found on
RjsWritingLoft.Com || MyBlog and his website. Written in honor of my wife and best friend it is headed, “For you, Princess.”

FMS Global News

Fibrohugs Support

Tenderpoints Newsletter

Detroits Best Music

Growth hormone as concomitant treatment in severe fibromyalgia associated with low IGF-1 serum levels. A pilot study.

Cuatrecasas G, Riudavets C, Guell MA, Nadal A.

ABSTRACT: BACKGROUND: There is evidence of functional growth hormone (GH) deficiency, expressed by means of low insulin-like growth factor 1 (IGF-1) serum levels, in a subset of fibromyalgia patients. The efficacy of GH versus placebo has been previously suggested in this population. We investigated the efficacy and safety of low dose GH as an adjunct to standard therapy in the treatment of severe, prolonged and well-treated fibromyalgia patients with low IGF-1 levels.

METHODS: Twenty-four patients were enrolled in a randomized, open-label, best available care-controlled study. Patients were randomly assigned to receive either 0.0125 mg/kg/d of GH subcutaneously (titrated depending on IGF-1) added to standard therapy or standard therapy alone during one year. The number of tender points, the Fibromyalgia Impact Questionnaire (FIQ) and the EuroQol 5D (EQ-5D), including a Quality of Life visual analogic scale (EQ-VAS) were assessed at different time-points.

RESULTS: At the end of the study, the GH group showed a 60% reduction in the mean number of tender points (pairs) compared to the control group (p<0.05; 3.25+/-0.8 vs. 8.25+/-0.9). Similar improvements were observed in FIQ score (p<0.05) and EQ-VAS scale (p<0.001). There was a prompt response to GH administration, with most patients showing improvement within the first months in most of the outcomes. The concomitant administration of GH and standard therapy was well tolerated, and no patients discontinued the study due to adverse events.

CONCLUSIONS: The present findings indicate the advantage of adding a daily GH dose to the standard therapy in a subset of severe fibromyalgia patients with low IGF-1 serum levels. Trial Registration: NCT00497562 (ClinicalTrials.gov).

PMID: 18053120 [PubMed - as supplied by publisher]

FMS Global News

Fibrohugs Support

Tenderpoints Newsletter

Source