FibroAction News Feed

WEGO Health do Interview with FibroAction Founder

Fri, 23 May 2008 12:00:00 +0100

WEGO Health have done a Spotlight interview with FibroAction founder, Lindsey Middlemiss. Click here to read the interview.

WEGO Health is a online resource connecting health activists and empowering them to help others. Health Activists are group leaders and forum moderators, bloggers and book authors, coaches and caregivers; a community of people who care deeply about others, with a passion for sharing knowledge and experience for the greater good.

WEGO Health Activists are devoted to a broad range of conditions and causes, including diabetes, Migraine, Alzheimer's Disease, Diet, Fitness and Fibromyalgia Syndrome (Fibro). One of WEGO Health's first projects has been to make online health information more useful and easily accessible by everyone, by identifying, ranking, rating and organising web pages with just the most useful health content across a wide range of health topics. So far, nearly 30,000 pages have been identified and ranked. FibroAction will be working with WEGO Health to improve their information on Fibro

FibroAction Website Gets Upgraded

Sun, 01 Jun 2008 12:00:00 +0100

The FibroAction website upgrade has finally been implemented! We hope you like the new look site and will benefit from the extra information and tools we have added.

As well as making use of all the information on the site, you can now sign up for FibroAction's free e-newsletter, bringing all the latest news, research and articles straight to your inbox every month.

More sections will be added to the website over time and the Research section, Patient section, Healthcare Professionals section and News will have new content each month. If you prefer getting updates through feeds, then RSS (Really Simple Syndication) feeds are available for all frequently updated content - subscribe to the feeds on the pages you want to stay up-to-date with.

You can help us to continue to improve the website in a number of ways:

Let us know what you think! If there is something that you think is missing from our website, contact us and let us know your suggestion.
Remember that FibroAction wants to encourage awareness raising events and activities. If you are organising an event, contact us and let us know all about it. We may be able to help and can publicise the event in our Awareness section.
Contact us and let us know if you get any local press done on Fibro or if you see anything in the press about Fibro. FibroAction tries to keep an eye on the media coverage, but we can't read every single newspaper in the country! The more media coverage Fibro gets, the more journalists are likely to realise that Fibro is a story that isn't going away, and one that is of interest to a large number of people
If you run a support group, contact us with details and we will help to publicise the group by adding it to our Support Group Directory. If you are a group member, encourage the group leader to contact us.
If you know of a healthcare professional who has a good understanding of, and treats, Fibro, then recommend them for the Health Professionals List.

We hope you enjoy using the website!

Tried and Tested project launches today

Thu, 05 Jun 2008 12:00:00 +0100

The Tried and Tested launch event is today!

If you are in the Reigate, Surrey area today. come along to the event, which starts at 2pm

FibroAtion founder and chair, Lindsey Middlemiss, will be there to give a brief talk and to support this awareness raising event, organised by Caroline Hinkes, a member of the Surrey and Sussex Support group.

The Tried and Tested project aims to get volunteers with Fibro to try out complementary therapies for free so that a guide can be compiled with people’s experiences, enabling other sufferers to make targeted decisions about how they spend their money.

The Tried and Tested project is being launched with an event at 2pm on Thursday 5th June in Reigate. Presentations will be made about the various therapies on offer with the project and ice cool healthy smoothies have kindly been sponsored by Urban kitchen for attendees to try. £5,000 worth of products for Fibromyalgia will be made available for volunteer Fibro sufferers to take home for free and test. Volunteers will then be able to keep many of the products.

Website downtime

Wed, 11 Jun 2008 12:00:00 +0100

Apologies if the website's downtime today has been an issue for you. The servers in the States were recently updated and there may still be some "bugs". Hopefully the issues have now been sorted and we should be back to normal.

Website issues

Sun, 15 Jun 2008 12:00:00 +0100

Apologies if you tried to access the website over the week and found it offline. We've been experiencing further issues with our service provider, and are now changing providers which should hopefully solve the problems.

PolkaDotGals Calendar available to preorder

Mon, 16 Jun 2008 12:00:00 +0100

The PolkaDotGals Calendar for Fibromyalgia Awareness is now available to pre-order from the PolkaDotGals Ltd website.

The PolkaDotGals Campaign for Fibromyalgia Awareness was founded by former model Bianca Embley, a long-term Fibromyalgia Syndrome (Fibro) sufferer. The main focus of the PolkaDotGals Campaign has been the PolkaDotGals Calendar for 2009, which has been shot by renowned London photographer, Luke Varley. The tasteful and artistic part-nude calendar features Fibro sufferers and celebrities such as model Danni Wells, championship hurdler Sara McGreavy, America's Cup sailor David Carr and Coventry City footballers Elliott Ward and Michael Doyle. Amusing and yet informative quotes about Fibromyalgia are featured on each page of the calendar to add to its impact in raising awareness of the condition.

For more information see the National Awareness Events and Activities page.

To pre-order the PolkaDotGals Calendar, go to www.polkadotgals.com.

FibroActions Useful Links Directory updated

Wed, 18 Jun 2008 12:00:00 +0100

The Useful Links Directory on the FibroAction Website has been expanded and now contains more links that may be of use to people with Fibromyalgia Syndrome (Fibro).

The Useful Links Directory has been sorted into categories:

Medical and Medication Information

General Support and Information

Information about conditions that may be related to Fibro

UK Fibro Awareness

UK Support Groups

UK Doctors and Clinics that specialise in Fibro

International organisations relelvant to Fibro

Other organisations relevant to Fibro

International Doctors and Clinics that specialise in Fibro

If you have a suggestion of a link to be included in the Useful Links Directory, then do contact us.

Disclaimer: FibroAction aims to include links to websites that provide relevant and useful information for people living with and interested in Fibromyalgia Syndrome (Fibro). We will not knowingly provide links to sites that contain illegal, offensive or misleading information. Links will be provided based on the above criteria and at the discretion of FibroAction. Although we endeavour to check sites for high quality, accurate and appropriate information, FibroAction does not endorse nor accept any responsibility for the content of other websites. However, any concerns should be raised with the website admin team.

Professional Advisory Board Launch

Fri, 20 Jun 2008 12:00:00 +0100

FibroAction is proud to announce the launch of our Professional Advisory Board.

The Professional Advisory Board (PAB) will advise FibroAction's trustees/directors and it consists of professionals who have an interest in Fibromyalgia Syndrome (Fibro).

The founding members of FibroAction's PAB are:

Professor John E Davies MRCS D.Phys.Med FFSEM, a consultant Rheumatologist and Professor in Sports Medicine, who leads the NHS FMS Clinic at Guys Hospital, London and has been specifically treating Fibromyalgia Syndrome and Myofascial Pain patients for over a decade at his private clinics in London and Bristol.

Daniel Austen BSc, the Clinic Manager for the London and Bristol FM Clinics, headed up by Professor John E Davies. Daniel has a long history of setting up new or cutting edge medical treatments in the UK in both the NHS and Private sectors and he has Fibromyalgia Syndrome himself.

Dr Kim Lawson, BTech (Hons), PhD, of the Biomedical Research Centre, Sheffield Hallam University, is a research pharmacologist with an international reputation in Drug Discovery Research. Dr Lawson has research interests in the identification of novel targets for the development of drugs for the treatment of Fibromyalgia Syndrome.

Dr David Middlemiss, PhD, a Medicinal Chemist by training with 40 years experience in the Pharmaceutical industry. Dr Middlemiss is founder of XaviaPharm, an independent consultancy, which specializes in Medicinal Chemistry, Drug Discovery and strategic analysis. He is also a co-founder and Director of Theradeas Ltd., and Pharmadeas Ltd.

For more information, please see the Professional Advisory Board (PAB) Members section.

Website Move Completed

Sat, 21 Jun 2008 12:00:00 +0100

FibroAction has just completed its move to a new website hosting provider with higher bandwidth, allowing more website traffic, and the capacity to cope with greater user numbers than our previous provider.

We are confident that this will mean the intermittent interruption in service that we have been experiencing should be a thing of the past. Thank you for your patience whilst we resolved these issues.

We would like to thank our internet development team for the work they have done in developing FibroAction’s website and with moving website hosting provider.

Fibro at the EULAR Congress of Rheumatology

Mon, 23 Jun 2008 12:00:00 +0100

The recent EULAR 2008 Annual European COngress of Rheumatology took place from 11th to 14th June in Paris and 93 abstracts discussing Fibromyalgia Syndrome were submitted to the congress.

EULAR (the European League Against Rheumatism) defines rheumatology as "including rheumatic diseases of the connective tissue, locomotor and musculoskeletal systems" and EULAR addresses regional pain syndromes, such as RSD, and widespread pain syndromes, such as Fibromyalgia Syndrome (Fibro), as well as the more usual rheumatological conditions, such as the different forms of arthritis and autoimmune conditions. Last year, EULAR released their evidence based guidelines for the management of Fibromyalgia Syndrome, which were the first such guidelines to be published for Fibro.

According to EULAR, the aim of the annual congress is "to provide the best forum of the highest standards for scientific (both clinical and basic science), educational and social exchange among professionals involved in rheumatology, with links to patient organisations, in order to achieve progress in clinical care of patients with rheumatic diseases."

The congress included scientific sessions organised by EULAR and satellite sessions organised by various companies and there were also a large number of companies and organisations exhibiting at the Congress, including the American National Fibromyalgia Association.

A total of 93 abstracts of scientific papers that discussed Fibro were submitted to the Congress and presented there, demonstrating the good level of interest in and research into the condition.

There were also 6 satellite symposia relating to Fibro, sponsored by various pharmamceutical firms including Lilly, whose drug Cymbalta (duloxetine) was recently approved by the treatment of Fibro by the American FDA (Cymbalta approval article) and Pfizer, whose drug Lyrica (pregabalin) was FDA approved for Fibro last year.

The amount of discussion of Fibro at the Congress reflects the large and increasing amount of interest in the condition internationally, and the volume of research being done into Fibro. This is all goes to show that despite the low level of awareness generally in the UK, great steps are being made in knowledge of the condition.

Software upgrade tonight

Mon, 14 Jul 2008 12:00:00 +0100

The FibroAction website is having a software upgrade tonight, which may cause some interruption to the FibroAction website service.

The work will begin at 11pm BST on Monday July 14th.

FibroAction helps NHS Direct update Fibro topic

Mon, 14 Jul 2008 12:00:00 +0100

FibroAction is delighted to announce that NHS Direct have updated their website information on Fibromyalgia Syndrome (Fibro).

Following input from FibroAction, the editorial team at NHS Direct fully reviewed and updated all sections of the Fibro topic and the updated information was published on July 10th.

The NHS Direct website is the first port of call for many patients, medical professionals and media and the much expanded and improved Fibro topic will help to raise awareness of the realities of the condition.

FibroAction's website, including our entire About Fibro section, was referenced in the updated NHS Direct topic. We are pleased and proud that the information we have produced is considered worthy of reference on such a high profile website as NHS Direct.

Because the NHS Direct website information is used so often, this update could have a great impact on awareness of the condition. Here at FibroAction, we consider this to be an important step forward in our work to raise awareness of Fibro and make accurate, up-to-date information easily accessible.

FibroAction will continue to work with NHS Direct, and other organisations, to make sure that the information about Fibro that is available to patients, medical professionals and media is as good as possible.

To see the improved article, please see the NHS Direct website article on Fibro.

USA FDA seeks warning for anticonvulsants

Mon, 14 Jul 2008 03:00:00 +0100

The American Food and Drug Administration (FDA) announced last week that it will be seeking to get "black-box warnings" on all anti-epileptic drugs, including Neurontin (Gabapentin) and Lyrica (Pregabalin) which are also used for neuropathic pain and Fibromyalgia Syndrome (Fibro).

The warnings, which will appear in a black box on the medication boxes in the USA, will be to alert prescribers and patients about an increased risk of suicidal thoughts and behaviors, or suicidality associated with these medications.

Last year, Lyrica became the first medication to get FDA approval for its use as a treatment for Fibro. Lyrica is often considered to be a more modern alternative to Neurontin, which is sometimes prescribed for Fibro, despite being "off-label" or unapproved.

In January of this year, the FDA issued a warning that Lyrica, Neurontin and other anti-epileptic drugs (anti-convulsants) could cause increase a patient’s risk of suicidal thoughts and behaviors.

The FDA carried out meta-analyses of 199 placebo-controlled trials of the 11 drugs in question in 2005, after one firm indicated that their results showed an increase in the incidence of suicidality. The trials involved 27,863 treated patients and 16,029 given placebo. The FDA's analyses showed that patients taking those medications have about twice the risk of suicidality compared with placebo, although they also showed that the relative risk for suicidality was higher in the patients with epilepsy compared with patients given one of the drugs for psychiatric or other conditions, such as Fibro.

The higher risk of events for the drug-treated patients was observed as early as one week from starting treatment until at least 24 weeks, the FDA said, adding that after 24 weeks, it was not possible to draw conclusions due to the lack of data.

Regulators in the USA are calling for the black-box warning to be added to the labeling for all antiepileptic drugs, even though there was no signs of increased risk of suicidality detected for three of the 11 medications.

Russell Katz, director of the FDA's Division of Neurology Products, is reported to have said that there seemed to be no good reason to ignore "what appears to be a very clear empirical finding of an increase in suicidality, despite no obvious explanation for this finding."

Mr Katz also noted that at least one firm, has come to a different conlusion than the FDA having performed additional analyses of the data for its own drugs. This firm and others will have to submit their own information to the FDA committee for review.

FibroAction would like to remind Fibro patients that stopping any medication suddenly may be dangerous in itself. If you have concerns about taking any medication, please see your doctor before changing anything.

Updated Fibro Info on NHS professionals website

Tue, 15 Jul 2008 12:00:00 +0100

The updated information on Fibromyalgia Syndrome (Fibro) that was recently published on the NHS Direct website is also available on the NHS Clinical Knowledge Summaries website.

Following input from FibroAction, the editorial team at NHS Direct fully reviewed and updated all sections of the Fibro topic and the updated information was published on July 10th. It has since been brought to FibroAction's attention that this updated information is also available on the NHS Clinical Knowledge Summaries (CKS) website

the NHS CKS are a reliable source of evidence-based information and practical 'know how' about common conditions, aimed at healthcare professionals working in primary care, from GPs and Accident & Emergency staff to nurses and pharmacists. CKS is a central resource of the National Library of Health (NLH) which is part of the NHS Institute.

Despite the high numbers of Fibro sufferers, awareness of the condition, and the knowledge and treatments available for it, is very low, even amongst medical professionals. There are a number of common misunderstandings about Fibro, such that there is nothing that can be done for it.

The updating of the NHS CKS information on Fibro, as well as the NHS Direct website, means that healthcare professionals now have better information available on their own NHS information sources.

If, as so often happens, a GP tells a Fibro patient that there is nothing that can be done to help the condition, then those GPs can now be referred to their own CKS service for more up-to-date information.

The information can be printed out as a patient information leaflet and is available from the CKS Library.

Doctors to get yearly appraisals

Wed, 23 Jul 2008 12:00:00 +0100

All doctors in the UK are to undergo more appraisals in the future, according to plans set out by the Chief Medical Officer today.

Chief Medical Officer Sir Liam Donaldson's report 'Medical Revalidation: Principles and Next Steps' outlines how senior doctors will be appointed to assess the competence of GPs and hospital consultants in their area to ensure that patients’ lives are not being put at risk.

The new system will make annual appraisals of all doctors mandatory. These appraisals will cover the full range of performance factors, including prescribing habits, interaction with patients and personal problems such as alcohol or drug misuse. GPs, private practitioners and hospital consultants will also have to have their medical licences reissued every 5 years.

The General Medical Council (GMC), which was founded in 1858 to regulate doctors’ fitness to practise, recommended continuing reviews of doctors’ credentials ten years ago, after a series of scandals over medical incompetence. Calls for further appraisals were renewed after the case of GP Harold Shipman, who murdered up to 250 of his patients.

The GMC said today that it had dealt with 5,168 complaints about doctors last year – 1,300 more than in 2000 – but only about 1 in 3 led to an investigation, and fewer than 5% of complaints to a hearing. A total of 60 doctors were struck off.

Sir Graeme Catto, President of the GMC, described today's report as a “wake-up call” for doctors and local NHS organisations.

Critics of the scheme have said that the new system could lead to doctors having less time to spend with patients because of extra bureaucracy, something that the Department of Health has denied.

However, Claire Rayner, president of the Patients Association, has said that she is delighted by the new plans:

"It's a complicated business, medicine, to say the least, and it is much too easy to say: 'All you have to do is get your qualification, shove up your plates, and get on with the job'."

Dame Carol Black, President of the Academy of Medical Royal Colleges, has also welcomed the new plans, describing revalidation as a “unique opportunity” for all doctors to demonstrate to patients, the public, their employers and peers their competence to provide high-quality medical care.

The new system may give Fibromyalgia Syndrome (Fibro) patients more recourse to demand that their doctors do not refuse to diagnose and treat them, and better response to complaints if a bad experience is had with a doctor. Some doctors still refuse to believe in the validity of the Fibro diagnosis, despite the increasingly large volume of research that demonstrates the condition is very real. Others may diagnose patients and then tell them there nothing they can do, despite there now being many treatment options (both pharmacological and non-pharmacological) known about and available for Fibro patients. The new system may help prevent doctors failing their Fibro patients in this way.

The system is planned to be drawn up and piloted over the next 18 months.

Let Us Know Your Awareness Week Plans

Sat, 26 Jul 2008 12:00:00 +0100

UK Fibro Awareness Week 2008 will be from 7th to 13th September and FibroAction would like to hear if you are involved with an awareness raising event or activity for the week.

A number of events are planned around the UK to celebrate the Awareness Week and FibroAction would like to hear from you if you are organising an event. Email us details at info@fibroaction.org.

Awareness events planned include:

The FollyPogs Dinner & Fun Evening

Jeanne Hambleton, of the blog FMS Global News and FaMily magazine, is organising a dinner & fun evening in aid of Fibro awareness and research. The Folly Pogs Dinner and Fun evening will take place on Friday 12th September, from 6.30pm at the Chichester Park Hotel, West Sussex, UK. The evening will include dinner, cabaret, comedy and charity auction. More more information, see the Folly Pogs Dinner & Fun evening page.

An Open Meeting in West Berkshire

The West Berks ME & Fibro Group is having an Open Meeting at the West Berkshire Community Hospital, Newbury, on Monday 8th September. The meeting will include refreshments, information stands and an opportunity to meet with group members and chat, before a talk on Fibro and how it can be treated by Daniel Austen, Clinic Manager for Prof John E Davies of the private UK FM/ME Clinics and the NHS FM Clinic at Guy's & St. Thomas' Hospital, London. The West Berks ME & Fibro Group will also have an informative display up in the hospital lobby throughout UK Fibro Awareness Week. For more information, see the West Berkshire Open Meeting page.

Other ways in which you could raise awareness:

Organise an event of your own. This can be as easy as announcing, via your local support group or in your local paper, that you would like to meet fellow sufferers for coffee.
Get your local paper and radio to do a piece on UK Fibro Awareness Week. If you need help with how to go about this, contact FibroAction.
Make sure your doctor has up-to-date information about Fibro. Print off information from this website, or ask your doctor to either look at this website, or the NHS Direct or NHS Clinical Knowledge Summaries websites which were recently updated. This would also be a great thing to do with physiotherapists, OTs and complementary therapists of all kinds. If you have a great doctor or other healthcare professional, why not recommend them for FibroAction's Recommended Healthcare Professionals List?
Buy FibroAction merchandise from the Spreadshirt shop and make people aware that yellow and black means Fibro - and what Fibro is. Even better, be very organised and order some early Christmas presents.
Order a copy or copies of the PolkaDotGals Calendar for Fibromyalgia Awareness, available from polkadotgals.com. Another great Christmas present!

Pharmaceutical firms give mixed reports

Sun, 27 Jul 2008 12:00:00 +0100

Some of the world's biggest pharmaceutical firms issued a mix of both positive and negative financial reports this week, with restructuring being a common theme.

Pharmaceutical firm Eli Lilly have announced that their net income for the 2nd quarter of this year soared up 44%, partly driven by the sales of which recently got FDA approval for Fibromyalgia Syndrome (Fibro).

In June, Lilly announced that the US Food and Drug Administration (FDA) has approved their medication Cymbalta for the treatment of Fibromyalgia Syndrome (Fibro). Cymbalta (Duloxetine hydrochloride) is only the second drug to be approved by the US FDA specifically for the treatment of Fibro. It is a selective serotonin and norepinephrine reuptake inhibitor (SSNRI or SNRI) and the first SNRI proven in studies to reduce pain in patients with Fibro.

Fibro is the fourth condition for which the US FDA has approved Cymbalta as a treatment. In addition to Fibro, Cymbalta is approved for the management of diabetic peripheral neuropathic pain and the treatment of major depressive disorder and generalized anxiety disorder, all in adults age 18 years and older.

Lilly announced that sales of Cymbalta alone increased by 26% to $654.4 million in the 2nd quarter of this year. However Lilly’s best-selling drug continues to be the schizophrenia drug Zyprexa (olanzapine).

However Lilly lowered its 2008 earnings guidance on how much its shares will be worth, as a result of costs related to plant closures and job eliminations. Financial analysts were not overly-excited by Lilly's 2nd quarter results as many of them are waiting to see whether a bloodthinning drug Lilly and Daiichi Sankyo are producing will be approved by the US FDA.

Pharmaceutical firm Bristol-Myers Squibb Co. also posted good 2nd quarter results, but announced further job cuts as part of their ongoing restructuring.

This news comes in the same week that pharmaceutical giant Pfizer reported a 26% increase in income for the 2nd quarter of this year, despite many analysts having forecast that the firm faces further challenges, having been hurt by steady declines in U.S. sales and not having any major drug approvals coming up.

In the 1st quarter of this year, Pfizer reported an 18% drop in profits, but the loss of US sales has been more than compensated for in the 2nd quarter with an increase in worldwide sales. Last year, Pfizer's Lyrica (Pregabalin) made Fibro history when it became the first drug approved for the treatment of Fibro.

GlaxoSmithKline (GSK), the world's second largest pharmaceuticals group, announced this week that they would be restructuring the firm, following a fall in profits for the 2nd quarter of this year, compared to both the 1st quarter of this year and the 2nd quarter of last year.

GSK now plans to operate more like a group of small biotech firms and hopes that its new approach will lead to more drugs being developed by the company that go on to earn a modest amount, instead of the group depending on sales of a few "blockbuster" drugs. The company also plans to get more advice from organisations like the National Institute of Clinical Excellence (NICE), which helps to decide which drugs the NHS pays for, in order to make sure that GSK's drugs will be cost-effective and sufficiently unique so that they are made available to more patients.

Dr Jacob Teitelbaum to visit the UK

Wed, 13 Aug 2008 12:00:00 +0100

Renowned Chronic Fatigue Syndrome (CFS) and Fibromyalgia Syndrome (Fibro) expert Dr Jacob Teitelbaum will be visiting the UK next week and will appear on national TV and radio, as well as giving a talk in Glasgow.

Dr Teitelbaum is the author of 'From Fatigued to Fantastic!' a popular book on managing chronic fatigue, and of 'Pain Free: 1-2-3'. He quite frequently speaks on chronic fatigue, Fibro and on the use of supplements to manage these conditions, and has previously appeared on CNN, FOX News and the Oprah and Friends Show with Dr. Oz in the US.

On Thursday 21st August at 1.30pm, Dr Teitelbaum will be speaking at the Pearce Institute in Govan, Glasgow. Anyone is welcome to attend. He will speak about his personal experience of dealing with Fibro and his research into chronic fatigue, with the theme 'Tired All The Time', a phrase doctors commonly hear and abbreviate to TATT.

Dr Teitelbaum also has a busy schedule of media appearances lined up for his visit. An interview with him is scheduled to be on BBC Radio 5 this Saturday evening. He will be then appearing live on ITV's This Morning show on Monday 18th August. On Wednesday 20th August, he will appear on the evening show for STV (Scotland), before being on the late show with Radio Clyde. And then on Thursday 21st August, Dr Teitelbaum will be on Steve Wright In The Afternoon with Richard Allinson on BBC Radio 2.

During his visit, Dr Teitelbaum will also be meeting with a number of UK doctors, researchers and clinic managers, as well as training doctors and nutritionists at complementary health centres such as The Essential Health & Wellbeing Centre in Glasgow and The NutriCentre in London.

No Medications UK Licensed for Fibro

Wed, 13 Aug 2008 12:00:00 +0100

The MHRA, the UK medications licensing agency, has confirmed that there are currently no medications or medical devices currently licensed specifically for use for treating Fibromyalgia Syndrome (Fibro) in the UK.

Some confusion was caused when, after FibroAction's input led to NHS Direct updating their information on Fibro, NHS Direct included a page that gave the impression that a number of medications were already licensed for Fibro in the UK.

NHS Direct removed the medicine guides for corticosteroid medications Methylprednisolone/Lidocaine and Prednisolone from the list after FibroAction pointed out that, according to the EULAR Evidence-based Recommendations for the Management of Fibromyalgia Syndrome, corticosteroids are not recommended for Fibro. Medicine guides for Amitriptyline, Fluoxetine, Ibuprofen and Diazepam were left on the NHS Direct website.

FibroAction has now had a definite response from the Medicines and Healthcare products Regulatory Agency (MHRA), the UK medicine licensing agency, saying that there are no medications or medical devices currently licensed specifically for use for treating Fibro in the UK. We hope that this clears up the confusion and FibroAction continues to work with NHS Direct to ensure that the information they provide is as accurate as possible.

A number of medications are in the pipeline to get approval to be licensed for use in treating Fibro in the UK. FibroAction hopes that we will soon see a number of medications licensed for use in treating Fibro in the UK as this will help to bring recognition to this often neglected condition. However, we would also like to remind patients and healthcare providers that there are a number of medications that can be use in treating Fibro and that patients should not be left to suffer unnecessarily.

Dr Jacob Teitelbaum joins FibroAction advisory body

Sun, 17 Aug 2008 12:00:00 +0100

FibroAction are proud to announce that popular Chronic Fatigue Syndrome (CFS) and Fibromyalgia Syndrome (Fibro) expert Dr Jacob Teitelbaum MD, has agreed to become the 5th member of FibroAction's Professional Advisory Board. This addition will add yet another distinctive voice to the growing collection of professionals who advise us and we look forward to working with him.

Dr Teitelbaum is a board certified internist (a medical doctor who specialises in the care of adults) in the USA, and he is Medical Director of the American national Fibromyalgia and Fatigue Centers, Inc. He is the author of 'From Fatigued to Fantastic!' a bestselling book on managing chronic fatigue, and 'Pain Free: 1-2-3', a step-by-step program to help identify the source of pain and understand how to alleviate it.

Dr Teitelbaum lectures to patient, physician and research groups internationally. He also speaks in the media on chronic fatigue, Fibro and on the use of supplements to manage these conditions, appearing on, among others, CNN, FOX News and the Oprah and Friends Show with Dr. Oz in the US and This Morning on ITV and STV in the UK.

He is the lead author of “gold standard” research on effective treatment for CFS and Fibro, which was published in the Journal of Chronic Fatigue Syndrome, volume 8, number 2 in 2001. In April 2002, he was editorialized in the Journal of the American Academy of Pain Management, where his integrative treatment protocol was recognized as “standard of practice” for chronic pain conditions. His latest study, published in the Journal of Alternative and Complementary Medicine, focused on the effects of a 5-carbon sugar called D-ribose on Fibro patients.

Dr Teitelbaum also knows CFS/Fibro as an insider - he contracted Chronic Fatigue Syndrome when he was in medical school and had to drop out for a year to recover. In the ensuing 25 years, he dedicated his career to finding effective treatment.

For more information on Dr Jacob Teitelbaum, see his website www.endfatigue.com. On this website, you can also sign up for his newsletter, as well as checking out the free short online program which will analyze your symptoms and history using the same assessment criteria that Dr. Teitelbaum uses.

IASP 12th World Congress on Pain

Wed, 20 Aug 2008 12:00:00 +0100

The International Association for the Study of Pain®'s (IASP's) World Congress on Pain is being held in Glasgow this week. FibroAction founder and Chair, Lindsey Middlemiss, attended the first day of the Congress, along with FibroAction Professional Advisory Board (PAB) member Daniel Austen, and Jo Fisher, the development officer for the Surrey & Sussex Support Group.

The IASP World Congress on Pain is a biennial, international and multidisciplinary event that attracts experts in pain from around the world. The 2008 event, being held at the Scottish Exhibition & Conference Centre (SECC) in Glasgow, has around 5,000 delegates, with Fibromyalgia Syndrome (Fibro) being widely acknowledged and well represented.

The highlight of the IASP World Congress on Pain for the Fibro community was a talk on Monday by leading Fibro expert, Daniel Clauw MD, discussing 'Stress and Chronic Pain: Lessons Learned from Fibromyalgia'. Dr Clauw is Professor of Medicine at the University of Michigan, USA, and has authored over 100 papers relating to Fibro, as well as a number of book chapters.

In his 30 minute talk, given to a full room in the 3,000 seat Clyde Auditorium, Daniel Clauw MD discussed Fibro from its causes to its treatments. A full review of Dr Clauw's talk will be published shortly.

As well as Dr Clauw's talk, there were also a workshop and a number of poster presentations being given on Fibro. The topical workshop on Monday was on the subject 'Myalgia: Are Myofascial Trigger Points and Tender Points of Fibromyalgia the same or different phenomena?'.

One of the posters presented on Monday was 'Fibromyalgia: Impaired Top-Down Control during Anticipatory Pain Relief', describing a study by Canadian researchers showing that, although anticipating pain can lead to greater perceived pain levels, the physical pain response in patients with Fibro is extreme, maintained and unaffected by whether patients think that something will hurt or not. The researchers concluded that:

"...[the pain reading in Fibro] cannot be reduced to a psychological epiphenomenon, but rather suggests a true neurological disturbance."

This is more proof that Fibro is a real condition that causes increased levels of pain physically.

Other posters concerning Fibro that were presented on Monday included:

'Plaintiff and Expert Credibility: What Judges Look for in Fibromyalgia Claims'
'Personality traits, anxiety and depression levels among patients suffering from Fibromyalgia'
'Psychoendocrine Stress Response and Pain Perception in Patients with Fibromyalgia Syndrome'

Further poster presentations on Fibro will be made during the week, including one from leading Fibro expert Patrick Wood MD on 'The Analgesic Capacity of Mesolimbic Dopamine D2 Receptors: Indirect Modulation of Thalamocortical Drive'.

The coverage of Fibro at an event of the size and importance of the IASP World Congress on Pain shows how seriously Fibro is beginning to be treated by the international community of doctors and researchers concerned with pain.

Daniel Clauw MD and Patrick Wood MD join FibroAction PAB

Wed, 20 Aug 2008 10:00:00 +0100

FibroAction is delighted to announce that Dr Daniel Clauw MD and Dr Patrick Wood MD have both agreed to join the FibroAction Professional Advisory Board (PAB).

Dr Clauw and Dr Wood are both world class experts on Fibromyalgia Syndrome (Fibro) and their addition to the FibroAction PAB is of huge significance to us.

Dr Clauw is Professor of Medicine at the University of Michigan, USA, and has authored over 100 papers relating to Fibro, as well as a number of book chapters. He spoke this week at the International Association for the Study of Pain®'s (IASP's) World Congress on Pain in Glasgow, where he met with FibroAction founder and chair Lindsey Middlemiss, along withFibroAction Professional Advisory Board (PAB) member Daniel Austen, and Jo Fisher, the development officer for the Surrey & Sussex Support Group.

Dr Wood is a respected authority on the cause and treatment of Fibromyalgia Syndrome who has been twice recognized by the American National Institutes for Health for his innovative research. He is also the originator of the Dopamine Theory of Fibromyalgia and has spearheaded the use of advanced imaging technologies including Positron Emission Tomography and Magnetic Resonance Spectroscopy to investigate fundamental changes within the central nervous system that result in the development of Fibro. He is presenting a poster this week at the International Association for the Study of Pain®'s (IASP's) World Congress on Pain in Glasgow.

FibroAction joins Chronic Pain Policy Coalition

Thu, 28 Aug 2008 12:00:00 +0100

FibroAction is proud to announce that it is now a member of The Chronic Pain Policy Coalition.

Established in 2006, the Chronic Pain Policy Coalition (CPPC) brings toegther professionals, parliamentarians and patients who operate at a policy level in order to develop an improved strategy for the prevention, treatment and management of chronic pain and its associated conditions. The CPPC seeks to improve the lives of the 7.8 million people in the UK who live with chronic pain, which will also bring substantial economic and social benefits for society as a whole.

Part of this is their campaign to make pain the 5th vital sign in the UK. Whilst it is common for health service professionals to measure the temperature, blood pressure, respiratory and pulse rates of their patients on a regular basis and at the earliest opportunity, pain is not measured with the same level of importance or frequency. The CPPC is campaigning for pain to be included as the fifth vital sign to be measured on a regular basis and at the earliest opportunity, using a simple 10 point scale.

Dr Beverly Collett, Chair of the Chronic Pain Policy Coalition, has been quoted as saying:

"If pain were routinely assessed with the same priority as the other vital signs, then a great deal of unnecessary suffering, stress and anxiety could be avoided."

This campaign could be of great importance to people with Fibro, not only because they can go to hospital with no other symptom than pain, but also because their pain can be out of proportion to any injury or illness and this is rarely taken into account.

You can help by "signing" their online petition here.

Raising Awareness in September

Fri, 29 Aug 2008 12:00:00 +0100

September is a busy month for awareness of Fibromyalgia Syndrome (Fibro) and other chronic, invisible and painful conditions.

UK Fibro Awareness Week runs from the 8th to 14th September. Fibro support groups around the UK are planning a variety of activities, including:

On Monday 8th September, the West Berks ME & Fibro Group is having an Open Meeting with refreshments, information stands and an opportunity to meet with group members and chat before a talk on Fibro and how it can be treated by Daniel Austen, Clinic Manager for Prof John E Davies of the private UK FM/ME Clinics and the NHS FM Clinic at Guy's & St. Thomas' Hospital, London. Daniel Austen is a member of FibroAction's Professional Advisory Board and a Fibro sufferer himself. For more information, click here.

On Friday 12th September, Jeanne Hambleton, of the blog FMS Global News and FaMily magazine, is organising a dinner & fun evening in aid of Fibro awareness and research. The Folly Pogs Dinner and Fun evening will take place at the Chichester Park Hotel, West Sussex, UK and the evening will include dinner, cabaret, comedy and charity auction. For more information, click here.

Even if you have nothing yet planned, there's still time to arrange something to celebrate UK Fibro Awareness Week and raise awareness of Fibro.

Hold a coffee morning and have it announced on local radio.
Ask your local paper if they will do an article on Fibromyalgia Syndrome for UK Fibro Awareness Week.
If you have a blog, raise awareness by blogging about Fibro during the Awareness Week.
Write to or go and see your MP and ask them to question your local NHS trust as to why specialist services for Fibro are not provided.
Ask your MP to attend the next meeting of the All Party Parliamentary Group (APPG) on Fibromyalgia and ask them to get your MEP to sign the declaration on Fibro being presented to the European Commission in September.
You could also write to your MEP yourself.
Even just asking your GP to read the updated information on Fibro now available on the NHS Direct, NHS Online and NHS Clinical Knowledge Summaries (formerly PRODIGY) websites will help raise awareness.
Or, for ultimate ease, buy a FibroAction t-shirt, hat or tote bag at the FibroAction Spreadshirt Shop and raise awareness simply by getting about! T-shirt slogans include: 'With Fibro even a butterfly touch could hurt' and 'Fibro sucks!'.

If you are organising anything for UK Fibro Awareness Week, then FibroAction wants to know! Email details of your event or activity to the admin team at info@fibroaction.org.

Invisible Chronic Illness Awareness Week runs from the 8th to 14th September as well. It is an American event but much of the week's activity is carried out online, with international participation not only possible, but encouraged. A number of people will be guest blogging over at the Invisible Illness Blog in the run-up to and during Invisible Chronic Illness Awareness Week. This week, FibroAction founder Lindsey Middlemiss takes a turn, choosing the topic of ‘Do You Think of Yourself as Sick?’ discussing whether, with a chronic invisible illness, you think of yourself as sick, disabled, or just someone who happens to have health issues. Check it out at the Invisible Illness Blog.

September is also National Pain Awareness Month in the USA and whilst this is not a UK event, you can can still do your bit. The Chronic Pain Policy Coalition, of which FibroAction is a member, is leading a movement to develop an improved strategy for the prevention, treatment and management of chronic pain and its associated conditions. Part of this is their campaign to make pain the 5th vital sign in the UK. You can help by "signing" their online petition here - wouldn't you want your pain levels to be amongst the first things checked when you go into hospital?

Fibromyalgia Syndrome declaration for European Parliament

Mon, 01 Sep 2008 12:00:00 +0100

Five Members of the European Parliament (MEPs) will today present a written declaration on Fibromyalgia Syndrome (Fibro) at the European Parliament.

The declaration, which will be presented by Ms Jolanta Dickute (Lithuania), Ms Kathy Sinnott (Ireland), Ms Frieda Brepoels (Belgium), Mr Nicolae Vlad Popa (Romania) and Mr Adamos Adamou (Cyprus), calls on the Commission and the Council to:

Develop a Community strategy on fibromyalgia in order to recognize this condition as a disease.
Help raising awareness of the condition and facilitate access to information for health professionals and patients, by supporting European and National Awareness campaigns.
Encourage Member States to improve access to diagnosis and treatment.
Facilitate research on fibromyalgia through the work programmes of the EU 7th Framework Programme for Research and future research programme.
Facilitate the development of programs for collecting data on fibromyalgia.

Around 380 MEPs need to sign the declaration in order for it to be presented formally to the European Parliament. The declaration will be available for MEPs to sign for 3 months from today (1st September 2008).

Fibro sufferers around Europe are being encouraged to write to their MEPs asking them to sign the declaration. A list of MEPs for your area can be found on the website of the UK Office of the European Parliament.

Fibromyalgia Syndrome on BBC Radio 4 Womans Hour

Tue, 02 Sep 2008 12:00:00 +0100

BBC Radio 4's Woman's Hour programme is planning to do a piece on Fibromyalgia Syndrome (Fibro) on Monday 8th September as part of UK Fibromyalgia Syndrome Awareness Week.

Details have yet to be confirmed, but FibroAction have been assisting the Woman's Hour producers to make contacts and gather information. Woman's Hour producers learnt of Fibro and the need to raise awareness of the condition through contact from Jo Fisher, the Development Officer of the Fibromyalgia Support group for Surrey and Sussex. Eminent rheumatologist Dr Ernest Choy has agreed to talk on the programme, which is likely to also contain input from a patient and someone with helpline experience.

The Woman's Hour programme has been broadcast for over 60 years, first on the BBC's Light Programme (now called Radio 2) and then on Radio 4. In its current format, the first 45 minutes of the programme consists of reports, interviews and debates on health, education, cultural and political topics, with the last 15 minutes being taken up with short-run drama serials. Apparently, research consistently shows that approximately a third of the programme's listeners are male!

A consultant Rheumatologist and Director of Research and Development at King's College Hospital, Dr Choy is also Reader and Director of the Sir Alfred Baring Garrod Clinical Trials Unit in the Academic Department of Rheumatology, King’s College London. Dr Choy is currently chairman of the Arthritis Research Campaign Clinical Trials Collaboration and a member of the European League Against Rheumatism (EULAR) Committee Standing Committee for International Clinical Studies Including Therapeutic Trials. He chairs the EULAR Taskforce on developing recommendations for management and classification criteria for Fibromyalgia Syndrome, which last summer produced a set of evidence based recommendations for the management of Fibromyalgia Syndrome. These were the first guidelines on the treatment of Fibromyalgia Syndrome to be produced in Europe. For more details on these, see here.

If you miss the piece on Fibro on Monday (when it is currently scheduled to be broadcast), then you we be able to listen again via BBC Radio 4's Woman's Hour website here.