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

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.

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.

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.

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.

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.

Severe blow for millions of Fibro sufferers as European Medicines Agency rejects first drug approval

Mon, 27 Oct 2008 12:00:00 +0000

The millions of Fibromyalgia Syndrome sufferers across Europe have this week received a severe knock-back with the announcement that that the Committee for Medicinal Products for Human Use (CHMP) at the European Medicines Agency (EMEA) has rejected the application of the first medicine, Duloxetine hydrochloride, trying to get approval as a treatment for Fibromyalgia Syndrome (Fibro) in the EU.

Earlier this year Duloxetine was the second medicine to get approval by the Food and Drug Administration (FDA) in the USA for the treatment of Fibro. Pfizer’s Lyrica (Pregabalin) was the first drug to get FDA approval in the USA for the treatment of Fibro in 2007.

Duloxetine has been authorised by the EMEA since December 2004 and is used for the treatment of adults with episodes of major depression, pain due to diabetic peripheral neuropathy, generalised anxiety disorder and stress urinary incontinence.

Pharmaceutical companies Eli Lilly and Boehringer Ingelheim (who would market the drug as Cymbalta and Xeristar respectively) applied for a change to the marketing authorisation so that Duloxetine could be officially indicated as a treatment for Fibromyalgia Syndrome and marketed for this purpose.

The CHMP refused this change, citing as reasons that they were concerned that the effectiveness of Cymbalta/Xeristar (Duloxetine) in treating Fibro had not been shown sufficiently, and that at that point in time, they were of the opinion that the benefits of Cymbalta/Xeristar (Duloxetine) in the treatment of Fibro did not outweigh its risks. The CHMP stated that their concern about the lack of effectiveness of the drug was because the “modest effects” could be due to the medicine’s effect of improving the patients’ mood. However a number of trials of Duloxetine as a treatment for Fibro have concluded that the drug’s effect on Fibro symptoms is independent of its effect on depression (Russell et al, 2008; Arnold et al, 2005; etc). The conclusion of multiple trials was that the drug was safe and efficacious in reducing symptoms of Fibro.

The European Network of Fibromyalgia Associations issued a press release yesterday saying that “it is suspected that the misperception, even among some medical professionals, in Europe that [Fibro] is not a real medical condition must have contributed to the decision”.

Despite an increasing body of evidence that Fibro is a real, physical condition that is not psychosomatic in nature, but is related to Central Nervous System (CNS) dysfunction, there are still medical professionals who refuse to admit the evidence and say that Fibro is a not a real condition.

Fibro is a debilitating, chronic condition whose main symptoms are widespread chronic pain, hypersensitivity to pain and chronic fatigue. Despite the high numbers of sufferers (between 1.2 and 2.7 million people in the UK alone), awareness of the condition, and the knowledge and treatments available for it, is very low, even amongst medical professionals, and many patients are left to suffer alone.

The EU marketing approval for Duloxetine and future drugs to apply is needed because, without it, pharmaceutical companies are unable to promote their products as treatments for Fibro. This product promotion has been seen in the USA to significantly raise awareness of the condition, and of the fact that there are treatments available for it, something that is desperately needed.

“FibroAction are disappointed to learn of the refusal by the CHMP to allow the clinical indications of Duloxetine to be extended to include Fibromyalgia Syndrome” said Lindsey Middlemiss, founder and chair of FibroAction. “We hope that outdated views of Fibromyalgia Syndrome were not a factor in this decision and that the evidence was considered without an unfair bias. The millions of people with Fibromyalgia Syndrome across Europe desperately need the help that a properly approved drug would bring and we hope that the CHMP will shortly be indicating a positive opinion about other treatments for the condition.”

The negative response from the CHMP is likely to perpetuate the myth that because no drugs have marketing approval in the EU for Fibromyalgia Syndrome, there are no treatments available for the condition. Because Duloxetine already has EMEA authorisation, it is available on prescription if a doctor considers that it is an appropriate treatment. This is also true of many other treatments for Fibro, some of which are already widely used.

References:

Russell, IJ, et al. Efficacy and Safety of Duloxetine for Treatment of Fibromyalgia in Patients With or Without Major Depressive Disorder: Results From A Six-Month, Randomized, Double-Blind, Placebo-Controlled, Fixed-Dose Trial, Pain. 2008.

Arnold, L, et al. A Randomized, Double-Blind, Placebo Controlled Trial of Duloxetine in the Treatment of Women with Fibromyalgia With or Without Major Depressive Disorder. Pain. 2005; 119 (1-3): 5-15

Arnold, L, et al. A Double-Blind, Multicenter Trial Comparing Duloxetine with Placebo in the Treatment of Fibromyalgia Patients With or Without Major Depressive Disorder. Arthritis Rheum 2004; 50(9):2974-84.

Patient UK updates their Fibromyalgia Syndrome information

Mon, 03 Nov 2008 12:00:00 +0000

FibroAction is pleased to announce that, following our input, Patient UK has updated their online information on Fibromyalgia Syndrome (Fibro).

Patient UK prides itself on providing information that is "The same health information as provided by GPs to patients during consultations" and it is a widely used resource for information on health conditions, used by both patients and their GPs.

FibroAction has been working with Patient UK over the last couple of months after we became aware that the information on Fibro they provided needed updating. A full review and update has now taken place and the information supplied is much improved, with the treatment section drawing heavily from the 'EULAR evidence-based recommendations for the management of fibromyalgia syndrome'.

FibroAction founder Lindsey Middlemiss said today:

"I am delighted that Patient UK has reviewed and updated their information on Fibro. Research into Fibro has discovered so much over the last few years and information sources need to be updated regularly to keep up with the pace of the knowledge acquired.

Patient UK's information is now far more accurate, and better reflects current knowledge of both Fibro and the treatments available for it."

The Patient UK update following FibroAction's input is the latest in a series on information updates that FibroAction has contributed to. During the summer, NHS Direct, the NHS Clinical Knowledge Summaries (formerly PRODIGY), NHS Choices and the BBC were among the organisations that updated their online information on Fibro following FibroAction's input. FibroAction aims to make up-to-date and accurate information about Fibro easily accessible for both patients and doctors and encouraging the updating of other online information sources is a key part of this.

The Patient UK update means that it is even more unlikely that, when a GP goes to look up information on Fibro to give to their patients, they will find inaccurate or out-of-date information.

Patient UK started as a directory of UK websites which provided information of health, disease and related issues. In December 2002, Patient UK was re-launched as a joint venture between PiP (Patient Information Publications) and EMIS (Egton Medical Information Systems), with considerably more content being added. The core team behind Patient UK are GPs, with other doctors and pjarmacists contributing to content.

The Patient UK information on Fibro is available here.

FibroAction teams up with the Charities Aid Foundation to enable online donations

Mon, 03 Nov 2008 12:00:00 +0000

You can now easily support FibroAction by making a secure online donation through the Charities Aid Foundation (CAF).

FibroAction is run entirely by volunteers and costs are kept down as much as possible, but funding restrictions still limit how much can be acheived.

"There is so much to be done to help the millions of Fibro sufferers in the UK" says FibroAction founder Lindsey Middlemiss, "and although I'm delighted with how much progress we have made over the last 6 months, we could get so much more done if we only had the time and funds.".

FibroAction has been running since April 2008 and acheived registered charity status in September 2008.

Despite only having been running for 6 months with very limited funding options because of the time needed to acheieve registered charity status, FibroAction has been managing to make a difference already.

Highlights of FibroAction's first 6 months include:

NHS Direct updating its online information on Fibro in July following FibroAction's input. NHS Choices and the NHS Clinical Knowledge Summaries (formerly PRODIGY) subsequently also updated their information.
The formation of a Professional Advisory Board (PAB), which now numbers eight, including Prof John Davies of the NHS Fibro Clinic at Guy's Hospital, London and renowned American experts such as Patrick Wood MD and Daniel Clauw MD.
The IASP World Congress on Pain in Glasgow, which FibroAction founder Lindsey Middlemiss attended. Daniel Clauw MD gave a talk on Fibro to around 2,500 delegates.
Producing our first 'About Fibro' leaflet for patients. The downloadable printable format of the leaflet saved FibroAction considerable funds and means that it can be easily updated without incurring much cost at all.
Acheiving registered charity status despite current Charity Commission restrictions.
The announcement that US Fibro expert Andrew Holman MD will be giving a Christmas lecture in the UK. The lecture, organised by FibroAction in association with Prof Davies of the Guy's Hospital Fibro Clinic will be held at Guy's Hospital, London on December 22nd and CPD approval is being sought from the Royal College of Physicians for this event. For more information, see the events page.
Patient UK updating their information on Fibro following FibroAction's input.

To help FibroAction continue to work to raise awareness of Fibro in the UK, perhaps you could make a small donation via CAF - click here if you can help us in this way.

For other ways in which you can support FibroAction's work, see the Support FibroAction page.

If you are interested in volunteering for FibroAction, please email us at info@fibroaction.org.

Why donate through CAF?

It’s fast, secure, and you can make a donation straight from your credit or debit card. You can even increase the value of your gift by up to 28% with Gift Aid – no strings attached.

CAF (Charities Aid Foundation) is a registered charity itself. It makes no profits and it saves charities like FibroAction money by reclaiming Gift Aid on our behalf. This means that not only can tax that you paid on the amount you donate be added to your donation through GiftAid, but you know that this money is not being wasted in administration costs.

If you’re a higher rate tax payer, you can print a receipt to use in your tax return, and claim back the difference between basic and higher rate tax in personal tax relief.

You can make your gift anonymously, dedicate it to a loved one with Fibro or even request that it be used for a specific ongoing or planned FibroAction project.

FDA Approval for Savella

Fri, 16 Jan 2009 12:00:00 +0000

Forest Laboratories, Inc. and Cypress Bioscience, Inc. have announced that Savella^TM (milnacipran hydrochloride), a selective serotonin and norepinephrine dual reuptake inhibitor, has been approved by the U.S. Food and Drug Administration (FDA) for the management of Fibromyalgia Syndrome (Fibro).

This is the third drug to get FDA approval for Fibro, after Lyrica (Pregabalin) and Cymbalta (Duloxetine).

Forest Laboratories is a US-based pharmaceutical company with a long track record of building partnerships and developing and marketing products that make a positive difference in people’s lives. Cypress Bioscience, Inc. is a US-based pharmaceutical company that provides therapeutics and personalized medicine services, facilitating improved and individualized patient care. They aim to address the evolving needs of specialist physicians and their patients by identifying unmet medical needs in the areas of pain, rheumatology, and physical medicine and rehabilitation, including challenging disorders such as Fibro and rheumatoid arthritis. Forest Laboratories, Inc. and Cypress Bioscience, Inc. have been working together to develop Savella^TM (milnacipran hydrochloride) as a marketable medication in the US. The medication was originally developed by the Pierre Fabre group, France’s second biggest independent pharmaceutical laboratory.

The safety and efficacy of Savella^TM (milnacipran hydrochloride) was established in two US pivotal phase III clinical trials involving over 2,000 patients with Fibro. The studies showed that Savella doses of 100 mg/day and 200 mg/day demonstrated statistically significant and clinically meaningful concurrent improvements in pain, patient global assessment, and physical function.

In both studies, a greater proportion of patients in the Savella^TM (milnacipran hydrochloride) treatment arms (100 mg/day and 200 mg/day) as compared with placebo treatment, at 3 months, experienced at least a 30% reduction in pain from baseline and also rated themselves as “very much improved” or “much improved” based on the patient global assessment. In addition, a greater proportion of patients treated with Savella as compared with placebo treatment met the criteria for a treatment response as measured by concurrent improvements in pain, physical function, and patient global assessment. In both studies, some patients who rated themselves as globally “much” or “very much” improved experienced a decrease in pain as early as week 1 of treatment with a stable dose of Savella^TM (milnacipran hydrochloride) that persisted throughout these studies.

The clinical development program demonstrated that Savella^TM (milnacipran hydrochloride) was safe and generally well tolerated. The most frequently occurring adverse reaction was nausea. Other common adverse reactions reported in these clinical trials were constipation, hot flush, hyperhidrosis, vomiting, palpitations, heart rate increased, dry mouth and hypertension. The majority of adverse reactions reported were mild to moderate in nature.

Savella^TM (milnacipran hydrochloride) has not previously been available in the US, but Forest and Cypress expect it to be available in American pharmacies by March 2009. Milnacipran, which is also marketed as Ixel, Dalcipran and Toledomin, is licensed for depression in a number of countries, including Austria, france, Israel and Japan. It is not licensed in the UK but has been used in research studies there.

Dr Daniel Clauw MD, Professor of Anesthesiology and Medicine (Rheumatology) at the University of Michigan and a member of FibroAction's Professional Advisory Board, has said that:

"Fibromyalgia is a complicated chronic pain condition, so it is important that physicians and patients have access to treatments that have been shown to help manage the symptoms that define the experience of fibromyalgia...The introduction of Savella is important because it is the first drug approved to treat the symptoms of fibromyalgia using a composite responder analysis.

Jay D. Kranzler, MD, PhD, Chairman and CEO of Cypress Bioscience explained that:

"Savella is the product of a unique clinical development program, one that considered a patient to be a responder to therapy only if they demonstrated concurrent clinically significant changes in multiple aspects of their fibromyalgia, including pain, patient global assessment and physical function. Savella is the only product approved for the management of fibromyalgia that used this complete responder analysis as its primary endpoint."

Most studies of medications for Fibro use pain scores as the only primary endpoint, although measures of functionality and the impact of the condition are sometimes used as secondary endpoints. The clinical development program for Savella^TM (milnacipran hydrochloride) was unique in its use of a composite responder analysis as the primary endpoint. This endpoint required individual patients to demonstrate concurrent improvement to multiple validated measures, including pain (visual analog scale), patient global assessment (patient global impression of change), and physical function (Short Form-36 Physical Component Summary).

Howard Solomon, Chairman and Chief Executive Officer of Forest said:

“We and our partner Cypress Bioscience are very pleased to receive marketing approval for Savella, following a first-cycle review, from the FDA. Fibromyalgia is a chronic and often debilitating condition with a significant need for new therapies. Savella is a valuable new treatment for patients afflicted with fibromyalgia. Its effectiveness was evaluated based upon the multiple symptoms included in the responder analysis.”

Jean-Pierre Garnier, Chief Executive Officer of Pierre Fabre SA, added that:

"This approval is crucial for Pierre Fabre Laboratories as milnacipran is one of the flagship products of our portfolio and represents another product of Pierre Fabre research registered in the United States”

Although the exact mechanism by which Savella^TM (milnacipran hydrochloride) improves the symptoms of Fibro is unknown, some researchers believe that abnormalities in certain brain neurotransmitters may be central to the condition. Savella^TM (milnacipran hydrochloride) blocks the reuptake of both norepinephrine and serotonin, and laboratory tests have suggested that it blocks the reuptake of norepinephrine most. This may be the mechanism by which Savella acts to improve the symptoms of fibromyalgia.

Important Safety Information from the press release

Savella^TM (milnacipran hydrochloride) is a selective serotonin and norepinephrine inhibitor (SNRI), similar to some drugs used for the treatment of depression and other psychiatric disorders. Antidepressants increased the risk compared to placebo of suicidal thinking and behavior (suicidality) in children, adolescents, and young adults in short-term studies of major depressive disorder (MDD) and other psychiatric disorders. Anyone considering the use of such drugs in a child, adolescent, or young adult must balance this risk with the clinical need. Short-term studies did not show an increase in the risk of suicidality with antidepressants compared to placebo in adults beyond age 24; there was a reduction in risk with antidepressants compared to placebo in adults aged 65 and older. Depression and certain other psychiatric disorders are themselves associated with increases in the risk of suicide. Patients of all ages who are started on Savella should be monitored appropriately and observed closely for clinical worsening, suicidality, or unusual changes in behavior. Families and caregivers should be advised of the need for close observation and communication with the prescriber. Savella is not approved for use in the treatment of major depressive disorder. Savella is not approved for use in pediatric patients.

Savella^TM (milnacipran hydrochloride) is contraindicated in patients taking monoamine oxidase inhibitors (MAOIs) concomitantly or within 14 days of discontinuing treatment of an MAOI or in patients with uncontrolled narrow-angle glaucoma.

Development of a potentially life-threatening serotonin syndrome may occur with agents that inhibit serotonin reuptake, including Savella^TM (milnacipran hydrochloride), particularly with concomitant use of serotonergic drugs (including triptans and tramadol) and with drugs which impair metabolism of serotonin (including MAOIs). The concomitant use of Savella with serotonin precursors is not recommended.

Blood pressure and heart rate should be monitored prior to initiating treatment with Savella^TM (milnacipran hydrochloride) and periodically throughout treatment. SNRIs, including Savella, have been associated with reports of increases in blood pressure and heart rate. Pre-existing hypertension, tachyarrhythmias and other cardiac diseases should be treated before starting therapy with Savella^TM (milnacipran hydrochloride). Savella^TM (milnacipran hydrochloride) should be used with caution in patients with significant hypertension or cardiac disease. For patients who experience a sustained increase in blood pressure or heart rate while receiving Savella^TM (milnacipran hydrochloride), either dose reduction or discontinuation should be considered.

Savella^TM (milnacipran hydrochloride) should be prescribed with caution in patients with a history of a seizure disorder, mania or controlled narrow-angle glaucoma.

Savella^TM (milnacipran hydrochloride) has been associated with mild elevations of ALT and AST (liver function tests). Rarely, fulminant hepatitis has been reported in patients treated with milnacipran. Savella^TM (milnacipran hydrochloride) should be discontinued in patients who develop jaundice or other evidence of liver dysfunction and should not be resumed unless another cause can be established. Savella^TM (milnacipran hydrochloride) should ordinarily not be prescribed to patients with substantial alcohol use or evidence of chronic liver disease.

As with other SNRIs and SSRIs withdrawal symptoms have been observed following discontinuation of milnacipran. A gradual dose reduction is recommended.

Hyponatremia may occur as a result of treatment with SSRIs and SNRIs, including Savella^TM (milnacipran hydrochloride). Discontinuation should be considered for patients with symptomatic hyponatremia.

SSRIs and SNRIs, including Savella^TM (milnacipran hydrochloride), may increase the risk of bleeding events. Patients should be cautioned regarding the risk of bleeding associated with concomitant use of Savella™ (milnacipran hydrochloride) and NSAIDs, aspirin, warfarin or other drugs that affect coagulation.

Male patients with a history of obstructive uropathies may experience higher rates of genitourinary adverse events.

According to the statement released, Savella^TM (milnacipran hydrochloride) is unlikely to be involved in clinically significant pharmacokinetic drug interactions. Pharmacodynamic interactions of Savella with other drugs can occur. Savella^TM (milnacipran hydrochloride) contains FD&C Yellow No. 5, which may cause allergic-type reactions in susceptible persons.

In clinical trials, the most frequently occurring adverse reaction was nausea. The most commonly occurring adverse reactions (≥ 5% and twice that of placebo) were constipation, hot flush, hyperhidrosis, vomiting, palpitations, heart rate increased, dry mouth, and hypertension.

Telegraph article

Wed, 18 Mar 2009 12:00:00 +0000

FibroAction founder Lindsey Middlemiss was this week mentioned in the health section of the Daily Telegraph, as part of an article on self-diagnosis using the internet.

Lindsey comments:

"Getting a diagnosis of Fibromyalgia Syndrome can be a very lengthy process and it isn't uncommon for patients to learn about the condition online before they learn about it from their doctor. Patients must always remember that a diagnosis must always be confirmed by a doctor, preferably a specialist, but the internet can help them to get to that stage.

The internet is a tremendous resource for patients and doctors alike and whilst patients have to learn how to best use it, doctors also need to acknowledge that patients usually know their own symptoms very well and that not all information available on the internet is dubious.

The internet can be incredibly useful and FibroAction is proud to be a part of that."

To see the article on the Telegraph website, click here.

Reputable sources of information on Fibromyalgia Syndrome on the internet include:

The FibroAction About Fibro section
The NHS Choices Guide to Fibromyalgia, which FibroAction helped update in 2008

Signs to look out for that suggest a site may be reputable include:

Being the official site of a government organisation, such as the NHS, a reputable and well known organisation, such as the British Medical Association,or a national registered charity, such as FibroAction.
Having references to the medical literature. If there are not references with the information, the organisation should be able to supply them. Be wary of references that just point to a group of websites or a few in-house publications or even publications all by the same doctor. Look for journal names such as The Journal of Pain (often abbreviated J Pain) or the Journal of Rheumatology (often abbreviated J Rheum) and world-renowned expert names such as Daniel Clauw MD, Muhammed Yunus MD and Patrick Wood MD among many others.
When was the information last updated? If this isn't listed, again, ask the organisation. Research on Fibromyalgia Syndrome is coming out all the time, so information that's even a few years old may be out of date.

FibroAction is trying to encourage positive media coverage of Fibromyalgia Syndrome but it is not something that we currently have much resources to devote to. If you would like to help with this, please contact us. No experience is necessary and training will be given as needed - in fact it would be a great opportunity if you would like to get into journalism or PR but could do with some training,experience and confidence boosting! Helping out could just involve an hour a week, working from home.

Lyrica refused European Marketing Approval

Thu, 23 Apr 2009 12:00:00 +0100

FibroAction has been informed that pharmaceutical giant Pfizer have been refused marketing approval for Lyrica as a treatment for Fibromyalgia Syndrome (Fibro) in Europe.

This follows the refusal of the European Medicines Agency (EMEA) to grant a marketing approval for Cymbalta as a treatment for Fibro in October 2008.

Currently, there are no treatments for Fibro which have European Marketing Approval.

More details to follow shortly.

Response from FibroAction to Lyrica EU Refusal

Thu, 23 Apr 2009 12:00:00 +0100

Press release 23 April 2009

Second blow for millions of Fibromyalgia Syndrome sufferers as European Medicines Agency rejects another drug

European sufferers of a painful chronic condition called Fibromyalgia Syndrome have received a second severe blow with the news that Pfizer’s Lyrica has been refused marketing approval as a treatment for the condition.

This comes after the Committee for Medicinal Products for Human Use (CHMP) at the European Medicines Agency (EMEA) also rejected a similar application for the drug Cymbalta (Duloxetine hydrochloride) back in October.

There are currently no specifically approved treatments for Fibromyalgia Syndrome (Fibro) in Europe.

Lyrica (generic name Pregabalin) was the first drug to get FDA approval in the USA for the treatment of Fibro, way back in 2007. Since then two other drugs – Cymbalta and Savella – have also been approved by the FDA as treatments for Fibro in the USA.

Lyrica has been an EMEA authorised treatment since July 2004 and has marketing approval as a treatment for neuropathic pain (pain from nerve damage), epilepsy in patients who have partial seizures and generalised anxiety disorder.

Pfizer applied for a change to the marketing authorisation so that Lyrica could be officially indicated as a treatment for Fibromyalgia Syndrome and marketed for this purpose. The CHMP refused this change, citing as reasons that they were concerned that the benefits of Lyrica in treating Fibro had not been shown either in the short or long term and that they were concerned that the safety and effectiveness of Lyrica had not been shown in patients from the EU.

FibroAction founder Lindsey Middlemiss commented today:

“FibroAction are disappointed to learn of the refusal by the CHMP to allow the clinical indications of Lyrica to be extended to include Fibromyalgia Syndrome. The millions of people with Fibromyalgia Syndrome across Europe desperately need the help that a properly approved drug would bring.

It is concerning that the CHMP are saying that they will not look at data gathered from outside the EU. This insular view seems extraordinary given that Pfizer presented them with data concerning the use of Lyrica as a treatment for Fibro in over 3,000 patients. Most drug trials for Fibro are done in the US as the climate for research into this complex condition is better over there. Does this mean that no drugs will be able to get approval in the EU as treatments for Fibro?”

This second negative response from the CHMP is likely to perpetuate the myth that because no drugs have marketing approval in the EU for Fibromyalgia Syndrome, there are no treatments available for the condition. Because Pregabalin already has EMEA authorisation, it is available on prescription if a doctor considers that it is an appropriate treatment. This is also true of many other treatments for Fibro, some of which are already widely used.

UK Parliament Westminster Hall debate on Fibromyalgia Syndrome to take place

Fri, 01 May 2009 12:00:00 +0100

FibroAction is delighted to announce that the All Party Parliamentary group on Fibromyalgia Syndrome has secured a Westminster Hall debate on Fibro. Unfortunately, the debate is scheduled for Tuesday morning, leaving very little time.

The debate will be from 9.30am to 11am on Tuesday 5th May (next Tuesday). The time for the debate was only confirmed yesterday, so with the Bank Holiday on Monday, it's meant that preparations are having to be made very fast.

Please take the time today if you can to email or call your MP, explain that you are one of their constituents and that you have Fibro. Ask them to attend the debate on Tuesday. You can find out who your MP is and how to contact them using the Find Your MP website.

Hopefully the debate will be televised - if we get more details on this, we'll let you know.

Westminster Hall debates are also open to the public to attend (but obviously not take part in!). If you can make it to London for Tuesday morning, then it would be great to have some Fibromites there to show the MPs that we're interested in what they say and do about Fibro. For more information on attending Westminster Hall debates, please see the UK Parliament website here. Do please note that getting through security can take some time, so ideally you would arrive at the visitors entrance to the Houses of Parliament by around 8.30am.

Update

You will hopefully be able to watch the debate via the Parliament Live TV Website - click here on Tuesday.

First UK Parliament Debate on Fibromyalgia Syndrome

Tue, 05 May 2009 01:19:00 +0100

The first ever UK Parliamentary debate on Fibromyalgia Syndrome took place today.

The Westminster Hall debate on Fibromyalgia Syndrome (Fibro) was secured by Rob Wilson, MP for Reading East and chair of the All Party Parliamentary Group on Fibromyalgia.

MP attendance was negatively affected by the short notice given for the debate and by it being the first debate of the first day back after a Bank Holiday weekend. However, nine MPs turned up, as well as Ann Keen MP, the Parliamentary Under Secretary of State for Health Services, who was there to answer the debate as her responsibilities include long-term health conditions.

FibroAction founder Lindsey Middlemiss was present at the debate, providing updates on Twitter throughout - the first time FibroAction have "tweeted" an event. Click here for the @FibroAction twitter feed. With Lindsey in the public viewing area were Patsy Baker, group leader of the new Guy's London Fibro Support, and Alice Reeves, a Fibro sufferer from Cheltenham, among others.

A more comprehensive report of the debate and its implications will be posted shortly.

You should be able to watch the debate on the Parliament TV website archives here.

Application for a UK NICE Guideline for Fibromyalgia Syndrome is Unsuccessful

Wed, 06 May 2009 12:00:00 +0100

The application for a NICE Guideline on Fibromyalgia Syndrome to be developed has been rejected by the National Institute for Clinical Excellence (NICE), it was revealed at a parliamentary debate yesterday.

The application was submitted by FMA UK and Dr Kim Lawson PhD, a member of the Advisory Boards of both FibroAction and FMA UK, in July 2007. No reponse was forthcoming from NICE until yesterday's Westminster Hall debate on Fibro was announced, when NICE responded to say that the application had been unsuccessful.

Although NICE Guidelines for a condition would usually include a care pathway for diagnosis, which would be of help to UK Fibro sufferers, it must be remembered that the role of NICE is to decide on what approaches are most cost effective.

This was brought up in yesterday's Westminster Hall debate on Fibro and it remains a concern that, while many doctors do not have an up-to-date understanding of Fibro and while there are no medications with marketing approval in the EU specifically for Fibro, a NICE Guideline may be more of a hindrance than a help. This is especially true given the cost implications as some of the newer medications for Fibro are relatively expensive, whereas widely used but not hugely effective old medications, such as amitriptyline, are relatively cheap. At this stage, a NICE Guideline may serve to recommend that the more expensive treatments for Fibro are not tried until there is more European evidence for their cost-effectiveness.

Report on the first UK Parliament Debate on Fibromyalgia Syndrome

Wed, 06 May 2009 12:00:00 +0100

Report by Lindsey Middlemiss

The first ever UK Parliamentary debate on Fibromyalia Syndrome (Fibro) took place in the Westminster Hall at the House of Parliament on Tuesday 5th May 2009.

The debate was secured by Rob Wilson, MP for Reading East, and the Chair of the All Party Parliamentary Group on Fibromyalgia Syndrome. Special thanks to go Rob, and his Parliamentary aides Marc and Gemma, for all the work they did in both securing the debate and preparing for it.

Despite attendance - and preparation for the Minister - being negatively affected by the debate being on the morning of the first day back after a Bank Holiday weekend and it clashing with a number of meetings, 10 MPs turned up. Ann Keen MP, the Parliamentary Under Secretary of State for Health Services attended to answer the debate as long-term conditions are her responsibility at the Department of Health. Speakers included: Rob Wilson, MP for Reading East; Philip Hollobone, MP for Kettering; Martin Horwood, MP for Cheltenham; Roger Williams, MP for Brecon and Radnorshire; Norman Lamb, MP for North Norfolk; Bob Spink, MP for Castle Point; Anne Milton, MP for Guildford

I attended the debate, providing information to MPs and providing updates via Twitter - the first time FibroAction have ever "tweeted" an event!

This debate is an important step forward for the millions of Fibro sufferers in the UK. I felt that Tuesday’s debate was positive, although no definite actions were agreed on. I was able to have a chat with Ann Keen after the debate and hope to be able to meet with her in the near future to discuss ways in which to improve awareness and education relating to Fibro.

Key points

Key points to come out of the debate were:

Fibro is surprisingly common.

Written responses to MPs' questions about Fibro have been unencouraging, with the Government having no plans to improve the treatment of people living with the condition, collect data on the condition or raise awareness of it.

Chief Medical Officer, Sir Liam Donaldson, recognised the impact of Fibro and its prevalence in the UK as a cause of chronic pain in his annual report of 2008.

A major initiative to widen access to pain services is badly needed, something that Ann Keen MP agreed with, but she was told that she needed to follow through on this.

The application for a NICE Guideline on Fibromyalgia Syndrome has been rejected. There was some debate about whether a NICE Guideline being implemented at this stage could be detrimental, and could just lead to doctors being unable to prescribe some medications already being used as treatments for Fibro. Ann Keen MP emphasised that NICE is independent of the Government, which makes it difficult for her to intervene.

Lengthy diagnosis times is a particular issue for sufferers.

GP education regarding Fibro should be a priority. It is not good enough just to look at the training of new doctors coming through the system. As Norman Lamb MP said, "We need to focus on continuing professional development for those who are already in post and who are all too often failing to give their patients an adequate or accurate diagnosis."

Help from the Government is needed in raising awareness of Fibro.

Effective treatment of FIbro needs to available around the country, on the NHS, and with services signposted by the NHS and not just voluntary bodies. At the moment, although many NHS consultants provide specialist Fibro services, these are not on the NHS Choose and Book system as specialist services and so are difficult to access. It was mentioned that one of the common problems for Fibro patients is that the lack of NHS treatment and understanding means that they need private treatment, and their families build up large debts in their attempt to help. Specialist services already running that were mentioned by name included:

Professor John Davies and the NHS FM Clinic at Guy's Hospital, London;
the pain management service at Russells Hall hospital in Dudley;
the multi-disciplinary team at Bolton (where there is a specialist Fibro course and clinic);
Poole Hospital (where Dr Selwyn Richards provides specialist Fibro clinics);
and the course for Fibro patients being run by Essex community services in conjunction with Basildon University hospital.

People with Fibro often really struggle to access benefits.

More than 60% of all health care occurs in the community these days and one of the biggest challenges facing all Governments in the next 20 or 30 years will be the management of long-term conditions. That will include the management of chronic pain.

The NHS websites have been simplified to NHS Choices, a website for patients, and NHS Evidence, a website for healthcare professionals.

Fibro should fall under the Musculoskeletal Framework. This framework should help to improve diagnosis, management and treatment of Fibro and also supports an 18-week target for the time from referrals from GPs to the start of hospital treatment

Quotes

Highlighted quotes from the debate:

"I believe that the sheer scale of the illness and the suffering that results from it mean that it is high time fibromyalgia was taken seriously as an issue." Rob Wilson MP.

"...too many people are still needlessly suffering in pain while medical professionals struggle to reach a diagnosis." Rob Wilson MP.

"Getting an accurate diagnosis [of Fibro] is difficult, and about half of our GPs admit that the condition is often misdiagnosed." Rob Wilson MP.

"There is only so much that the third sector can do. Is it not time for the Department [of Health] to consider a nationwide awareness campaign to highlight Fibromyalgia Syndrome, and the importance of fast diagnosis and the provision of treatment? Do the millions of people who suffer with the illness not deserve at least that from their NHS?" Rob Wilson MP.

"One of the common problems for fibromyalgia patients is that the lack of NHS treatment and understanding means that they need private treatment, and their families have built up large debts in their attempt to help." Rob Wilson MP.

"Sufferers often have a sense that no one believes them, especially when they have to apply for benefits because they cannot keep their employment. They feel that no one believes that the condition is disabling, so they are left utterly alone. " Norman Lamb MP.

"Its [Fibro's] impact on relationships, social lives and the capacity to work is substantial. It is often the case that conditions such as fibromyalgia, myalgic encephalomyelitis and chronic fatigue syndrome have a greater impact on people’s lives and their capacity to function as human beings than many conditions that attract much greater attention in public discourse and in Parliament." Norman Lamb MP.

"I recognise how distressing fibromyalgia can be to those living with the condition and to their families, and I know that much of that distress is caused by difficulties recognising, acknowledging and accepting the condition and its impact. Like other chronic conditions, fibromyalgia can significantly affect physical and emotional well-being and disrupt work, social and family life." Ann Keen MP, Parliamentary Under Secretary of State for Health Services.

"I pay tribute to the hard work and dedication of the voluntary sector in helping people with fibromyalgia, especially FibroAction and the Fibromyalgia Association UK." Ann Keen MP, Parliamentary Under Secretary of State for Health Services.

Further resources

Click here to see the @fibroaction Twitter feed with its updates throughout the debate.

Watch the video of the debate on the Parliament TV website here.

Click here for the Hansard transcript of the debate.

Follow FibroAction on Twitter tonight from the Times Cheltenham Science Festival

Sat, 06 Jun 2009 04:00:00 +0100

FibroAction founder Lindsey Middlemiss is hoping to tweet from the lecture Pain at the Times Cheltenham Science Festival tonight. You can follow updates on Twitter by watching or following the FibroAction Twitter account - you don't have to registered on Twitter yourself.

The lecture Pain is being sponsored by Pfizer and will see Professor Robert Winston be joined by neuroscientist Professor Irene Tracey from the University of Oxford fMRI Centre , Michael Heinrich, Professor at the school of Pharmacy, University of London and chronic back pain sufferer Maggie Hayward as they explore living with pain and how it can be managed.

For more information, click here.

The lecture starts at 8pm. Click here for the FibroAction Twitter account.

Jacqui Mayes Nutrition and Fibro Talk

Sat, 04 Jul 2009 12:00:00 +0100

Event: Jacqui Mayes: Nutrition & Fibro
Organiser: The Reading Fibromyalgia Support Group
Type of event: Talk
When: Monday 13th July
Where: Prospect Park Hospital, Reading, Berkshire

Nutritionist Jacqui Mayes will be giving a talk on Nutrition & Fibro to the Reading Fibromyalgia Support Group on Monday July 13th, at 6pm.

Jacqui developed Fibro herself Following the birth of her second child and spent 5 years trying many conventional and alternative approaches to find a way of managing her condition. Nutritional Therapy helped her to get control of her Fibro and Jacqui was so impressed with the results that she decided to train as a Nutritional Therapist, completing a BSc (Hons) in Nutritional Therapy at Middlesex University. Her research thesis focused on ‘Fibromyalgia and Food’ investigating the link between foods consumed and Fibromyalgia symptoms. Jacqui published an extended abstract of her research thesis on the FibroAction website in March, which can be viewed here.

Jacqui is a full member of the British Association of Applied Nutrition and Nutritional Therapy (BANT) and the Complementary and Natural Healthcare Council (CNHC). She is also a qualified Dietary Analyst and NLP coach. For more information on Jacqui, see www.jacquimayes.co.uk.

Contact Jo Marsh on jomarsh10@hotmail.com for details of the talk.

Ann Keen MP to address meeting of the APPG on Fibromyalgia Syndrome

Sat, 04 Jul 2009 11:00:00 +0100

The Parliamentary Under-Secretary of State for Health, Ann Keen MP, will address a meeting of the All Party Parliamentary Group (APPG) for Fibromyalgia Syndrome on Monday.

Having the Minister agree to attend the meeting is a significant step forward for the APPG, and follows on from the parliamentary debate on Fibromyalgia Syndrome on May 5th 2009. Click here for the report on the parliamentary debate.

FibroAction are grateful for the amount of work that Rob Wilson MP, chair of the APPG on Fibromyalgia Syndrome, and his parliamentary team have done on the Fibro issue over the last few months.

The meeting on Monday will be at 3.15pm in Committee Room 17 at the House of Commons. There is limited space, but we hope to bring you a comprehensive report of the meeting.

APPG Meeting Cancelled

Mon, 06 Jul 2009 11:00:00 +0100

The meeting of the All Party Parliamentary Group (APPG) on Fibromyalgia Syndrome, scheduled to take place this afternoon has been cancelled. The main speaker, Ann Keen MP, the Parliamentary Under Secretary of State for Healthcare, pulled out of the meeting at short notice.

We will let you know if and when this meeting is rescheduled.

FibroAction shortlisted to win a Charity Times Award

Fri, 17 Jul 2009 12:00:00 +0100

We are delighted to announce that FibroAction has been shortlisted to win a Charity Times Award in the Best New Charity category.

The Charity Times Awards continue to be the pre-eminent celebration of best practice in the UK charity and not-for-profit sector, with 2009 being the tenth year of the awards.

The winners will be announced on Thursday 9th September 2009 at the Awards Gala Dinner, which will be hosted this year by the comedian Chris Barrie.

To see the complete shortlist, please click here.

Swine Flu and Fibromyalgia Syndrome information

Sun, 30 Aug 2009 12:00:00 +0100

The Swine flu pandemic poses a particular challenge to the Fibro community. Fibro sufferers may mistake flu symptoms for a Fibro flare, delaying diagnosis; they may feel more ill with the flu because of the overlap between swine flu and Fibro Symptoms; and some Fibro sufferers may be at higher risk of developing complications. The following information may be of use.

Swine Flu Information

Detailed information on swine flu is available on the NHS Choices website here.

Many of the symptoms are similar to a Fibro flare - fatigue, generalised or joint pain, upset tummy, headache, even feeling feverish. However some, such as a sudden cough developing, are not typical of a Fibro flare. A temperature of 38C or more is the critical sign of possible swine flu.

Prevention

Basic hygiene measures may help protect you from developing swine flu:

• Ensure everyone washes their hands regularly with soap and water.
• Clean surfaces regularly to get rid of germs. This is especially important if someone if your house has swine flu. Anti-bacterial cleaning wipes make it easier to frequently wipe down surfaces.
• Use tissues to cover your mouth and nose when you cough or sneeze,
• Place used tissues in a bin as soon as possible.
• If your partner has swine flu or is developing flu-like symptoms, avoiding hugging and kissing and, if possible, sleep separately.

Avoid unnecessary travel and avoid crowded places if possible. If you can work from home and change doctors appointments to telephone consultations, then do so.

Preparing for Swine Flu

If you do get swine flu, it will be helpful if you have made some basic preparations:

• Get a "flu buddy" who can get you prescriptions, medications and other supplies if you fall ill and cannot leave the house. Ideally this should be someone who does not live with you, but who lives close by, as housemates of sufferers are likely to become ill themselves.
• Make sure you have basic flu medications: paracetamol or co-codamol, decongestants, cough syrup, throat lozenges, etc. Ensure that you know which medications contain paracetamol as it is dangerous to overdose on paracetamol.
• Check that you are not about to run out of any medications you take for your Fibro.
• Stock up on basic supplies such as tissues and toilet paper.
• Stock up on easy to eat foods that require little or no preparation, such as soup.

If you have flu-like symptoms

If you have flu-like symptoms and are concerned that you may have swine flu, the NHS recommends that you:

Read up on swine flu symptoms on the NHS website here.
Stay at home and check your condition at the National Pandemic Flu Service. The National Pandemic Flu Service is a self-care service that will asses your symptoms and, if required, provide an authorisation number which can be used to collect antiviral medication from a local collection point.
You should call your GP directly if: you have a serious underlying illness; you are pregnant; you have a sick child under one year old; your condition suddenly gets much worse; or if your condition is still getting worse after seven days (or five days for a child).

If you develop severe symptoms, such as chest pain or significant difficulty in breathing, then seek medical help straight away.

Treatment

Treatment strategies used to lessen the symptoms of colds and normal flu may help you feel better if you have swine flu - take paracetamol-based cold remedies to reduce fever and other symptoms, drink plenty of fluids and get lots of rest.

If the flu causes a major flare of your Fibro, then other medications may help - for instance if you are unable to sleep or if you get muscle spasms. Talk to your GP if you have a specific problem like this and they may prescribe a short course of an extra medication. Heat and TENS machines may also be helpful. Be aware that joint or muscle pain may be a symptom of the flu itself and may be best treated with paracetamol to reduce your fever.

Fibro should be considered in the high-risk category with regards to swine flu as it is a chronic neurological disorder that can negatively affect the immune system by making you run down. It is therefore likely that if your doctor considers that you have swine flu, they will consider prescribing an anti-viral, most probably Tamiflu.

Information on the anti-viral medications used is available on NHS MedGuides here.

The most common side effects of Tamiflu are nausea, vomiting, diarrhoea, stomach ache and headache. These side effects mostly occur only after the first dose of the medicine and will usually stop as treatment continues. The frequency of these effects is reduced if the medicinal product is taken with food.

However, if you have a mild case, your doctor may decide to not prescribe you Tamiflu. Its use in a mild case will only serve to reduce how long you are sick by a day or so and the side effects may make you feel worse.

Make sure that any doctor you see about swine flu is aware that you have a chronic health condition and knows of any medications you may already be taking.

Edited 30 August 2009

Breaking News Lyrica appeal refused in Europe

Mon, 27 Jul 2009 12:00:00 +0100

FibroAction have just been informed by Pfizer that their appeal to get marketing approval for Lyrica as a treatment for Fibromyalgia Syndrome (Fibro) in the EU has been rejected by the Committee for Medicinal Products for Human Use (CHMP) at the European Medicines Agency (EMEA).

This appeal followed the refusal in April of the European Medicines Agency (EMEA) to grant a marketing approval for Lyrica as a treatment for Fibro in Europe.

Currently, there are no treatments for Fibro which have European Marketing Approval. Lyrica, along with Cymbalta (Duloxetine) and Savella (Milnacipran) are approved by the American Food and Drug Administration (FDA) as treatments for Fibro.

More details to follow shortly.

Panorama apologise for The Trauma Industry error

Wed, 29 Jul 2009 12:00:00 +0100

Following Monday's showing of the Panorama programme The Trauma Industry, which incorrectly referred to Fibromyalgia Syndrome as a psychological disorder, FibroAction have been in contact with the Panorama team to address the issues raised by the show, which upset many Fibro sufferers around the UK.

Panorama have now released a statement on their website apologising and have removed the programme from the BBC iPlayer while it is edited to correct the issue.

FibroAction founder & chair, Lindsey Middlemiss, said today:

"I am delighted that Panorama have taken the steps they have to address the issue of The Trauma Industry incorrectly referring to Fibromyalgia Syndrome as a psychological disorder. My personal thanks go to Panorama's editor Sandy Smith and the programme's director Kevin Toolis for the lengths they have gone to address this mistake.

Hopefully The Trauma Industry will now be able to better highlight the problems faced by people suffering following trauma and address the issues that the process of seeking compensation is open to fraud & may not always be the best thing for the health of genuine sufferers."

Panorama's statement is below and can be viewed here:

"Panorama's response to Fibroaction and FMA UK

Two organisations representing sufferers of fibromyalgia syndrome have objected to how it was represented in Monday's programme, The Trauma Industry.

The film referred to it simply as a psychological condition, which is inaccurate. While some in the legal profession regard it as a controversial diagnosis - and it is listed under psychiatric disorders in the Judicial Studies Board Guidelines, the NHS terms it a physical condition which causes pain to sufferers.

Fibroaction and FMA UK say the syndrome should be termed a neurological-related condition or a "condition, with an increasing body of evidence to show that it is a Central Nervous System related disorder".

The programme questioned whether sufferers of PTSD and other conditions that are difficult to test for should sue for compensation and included an example of a fraudulent claim by someone claiming to have fibromyalgia syndrome.

However, it was not the programme makers intention to imply that sufferers of any such condition are not genuine and apologise if any distress was caused to anyone in pain. "

Shaping the Future of Care Together Green Paper threatens AA and DLA benefits

Wed, 26 Aug 2009 12:00:00 +0100

A Government Green Paper Shaping the Future of Care Together was presented to Parliament by the Secretary of State for Health on 14 July 2009. This Green Paper proposes a number of changes to the way care in the UK is funded and managed, including the possibility of scrapping disability benefits, such as Attendance Allowance (AA) and possibly also Disability Living Allowance (DLA), and giving the money to social services for distribution in personal budgets instead.

The consultation period for the Green Paper ends on 13 November 2009.

These changes could mean that many people with Fibromyalgia Syndrome were worse off, as how the money from personal budgets was used would have to be agreed with relevant officials, such as a social worker. The money would not be yours to spend as you see fit, as is currently the case with DLA. Many people use DLA to pay for basics such as food, rent or heating, or to use it for private treatments or nutritional supplements. All of these costs can be necessary but hard to meet financially if you are disabled with Fibro or another condition. However, they are not considered to be "care".

You can download the Green Paper and Supporting documents here. The relevant section of the full Green Paper is on page 102-103.

You can respond to the consultation online, by email or by post. Full details on how to do so are available here.

The organisation BenefitsandWork.co.uk is highlighting the potential issues from the Green paper.

You can view BenefitsandWork.co.uk's FAQ on the issue and sign up to their campaign here.

FibroAction will be consulting with MPs and considering our response. The situation is complicated by the fact that MPs are currently on summer recess, when they work in their constituencies, so it is not possible to organise, for example, an APPG meeting to discuss the issue. MPs return to Westminster in October.

Volunteer to help FibroAction raise awareness of Fibromyalgia Syndrome

Sun, 30 Aug 2009 12:00:00 +0100

FibroAction is looking for more people to join our team of volunteers!

FibroAction's team of volunteers are based all over the UK, with most people working from home.

We are interested in getting a range of volunteers with various skills, including both people with Fibro and people without the condition.

Volunteering for FibroAction can help you improve or maintain skills, improve your confidence and improve your knowledge of Fibro and how to control it. If you are bored at home, thinking of getting back to work or even thinking about changing careers, then volunteering for FibroAction may be of help.

We are looking for volunteers who can help on an ongoing basis, but this can be arranged to suit your free time and the constraints of your health. Whether you can commit to doing a certain number of hours a week or would prefer to have no time constraints, but to instead go from one small project to another, taking it at your pace, it's entirely up to you.

We are particularly interested in volunteers with an interest in or experience of:

Graphic design
Writing articles
Research
Fundraising
Politics
Event management
Administration/Organisation

However almost everyone will have something to offer, to help with the work we do to provide information and raise awareness of Fibromyalgia Syndrome (Fibro).

If you are interested in volunteering, please contact us with your name, a contact number and any ideas of what you might be interested in helping with. Someone will call you in the next few weeks to discuss how you may be able to help.

If you have contacted us before and didn't get a response, please do contact us again - we're working to better our organisation of our team of volunteers.

UK Fibromyalgia Syndrome Awareness Week

Tue, 07 Sep 2010 12:00:00 +0100

September 6-12th is UK Fibromyalgia Syndrome Awareness Week. Will you be doing anything to help raise awareness?

The UK Awareness Week was started some years ago by FMA UK as an alternative to the International Awareness Day in May and now numerous support groups around the UK use it as a focus for awareness raising efforts.

Some simple ways to raise awareness:

If your local hospital, surgery or clinic would like flyers on Fibro, contact us.

Download fact sheets from the About Fibro section of the website to print out and give to your doctor.

Buy a FibroAction or Fibro Sucks! t-shirt, bag or badge and wear it with pride! Click here to go to FibroAction's Spreadshirt store for merchandise.

Call your local paper or radio station and ask if they would like to do a piece on you, your local support group, an event you may have organised or just on the fact that it is the awareness week.

Make an appointment with your MP or meet them at a constituency event and ask if they will support efforts to raise awareness of Fibro in Parliament by joining the APPG (All Party Parliamentary Group) on Fibromyalgia.

Make an effort to tell people about your Fibro.

September newsletter now online

Wed, 02 Sep 2009 12:00:00 +0100

The September edition of the FibroAction e-newsletter is now available online. We are continuing to work on the IT upgrade necessary to ensure the security of the e-newsletter. Hopefully "normal service" will be resumed next month! Thanks for all your support.

Click here to view the e-newsletter online

West Berkshire Neurological Alliance extends time limit for pain survey

Thu, 03 Sep 2009 12:00:00 +0100

The West Berkshire Neurological Alliance (WBNA), of which FibroAction is a member, are carrying out a survey of pain and pain management experiences from people in their local PCT area.

The results of the survey may be used to campaign for better services in pain management. At the WBNA conference, Brains, Pains & Gains in July, FibroAction founder and WBNA Executive Committee Member, Lindsey Middlemiss, presented preliminary findings from the survey. Following this event, there has been significant levels of interest in the survey from Berkshire West NHS officials, but also from Department of Health officials. The WBNA therefore decided the extend the survey to enable more people to take part.

To take part in the survey, you must live or work in the Berkshire West NHS districts of Reading, Wokingham and West Berkshire and experience pain, either acute/temporary pain that is expected to resolve or chronic pain.

Click Here to take survey

New advice on over the counter analgesics containing codeine

Thu, 01 Oct 2009 12:00:00 +0100

The Medicines and Healthcare products Regulatory Agency (MHRA) last month announced new advice on over-the-counter (OTC) medicines containing codeine and dihydrocodeine (DHC) to minimise the risk of overuse and addiction.

This follows recent advice from the government’s scientific advisory body, the Commission on Human Medicines (CHM).

The package of measures include clear and prominently positioned warnings on the label and patient information leaflet (PIL) about the risk of addiction, and the importance of not taking these medicines for longer than three days.

The revised guidance on the use of these products will focus on treating moderate pain not relieved by simple painkillers such as paracetamol and ibuprofen. There will also be updated controls on advertising to ensure the new warnings are clearly presented.

Large packs of effervescent codeine containing products will no longer be sold in the pharmacy but will be available on prescription, which further strengthens the voluntary action taken by manufacturers in 2005 on pack size reduction. All packs containing up to 32 tablets remain available for sale through a pharmacy.

MHRA Director of Vigilance and Risk Management of Medicines, Dr June Raine said that taken in the correct manner and for the right purposes, codeine and DHC are very effective and acceptably safe medicines.

“However, these products can be addictive and we are taking action to tackle this risk,” she said.

“The MHRA is ensuring that people have clear information on codeine containing medicines on what they are to be used for and how to minimise the risk of addiction.

“Anyone who has concerns should speak to their pharmacist or a doctor.”

The MHRA’s action is being taken in parallel with the Department of Health’s review of policy on addiction to prescription and OTC medicines.

Charity Times Awards 2009

Thu, 01 Oct 2009 12:00:00 +0100

FibroAction was short-listed as Best New Charity at the Charity Times Awards 2009, but unfortunately we did not win on the night, losing out to Live Life then Give Life, a charity founded by two young multiple organ transplant recipients to raise awareness of the need for organ donation.

Thanks go to Charity Times Awards 2009 sponsor I C Office Solutions who sponsored tickets to the gala dinner to enable FibroAction to have a presence there.

To see the complete shortlist and winners list, please click here.

Government refuses to rule out axing DLA

Fri, 16 Oct 2009 12:00:00 +0100

A senior government minister has confirmed to the House of Lords that axing DLA has definitely not been ruled out, under proposals suggested in the government green paper Shaping the Future of Care Together .

This is despite care minister Phil Hope MP assuring a reporter at the Labour Party conference in September that DLA is not under threat by the care green paper, saying:

""DLA is not under threat and people can be very happy"."

However, the Government failed to then confirm this. Judging by subsequent events, Phil Hope's statement now appears to have been either a slip by a minister who was unaware of his own Government's plans or an attempt to get positive party conference coverage by giving assurances the Government was not going to back.

In a debate in the House of Lords on Tuesday 13 October, veteran disability campaigner, Lord Ashley of Stoke asked which disability benefits the government are ‘considering integrating into the wider social care budget in England’.

Lord McKenzie of Luton, parliamentary under-secretary of state for the Department of Work and Pensions (DWP), replied:

"At this stage, we do not want to rule out any options and so are considering all disability benefits."

Later on in the debate, Lord Low of Dalston asked for clarification, specifically referring to Phil Hope's statement, saying:

"...given the reported statement by the Minister for Care Services that disability living allowance is not under threat, can the Minister confirm that neither component of the disability living allowance, whether paid to present or future recipients over as well as under 65, is being considered as a possible source of funding for social care?"

Lord McKenzie then repeated the Government position, contradicting Phil Hope, replying:

"My Lords, as I said in answer to the first Question, currently no particular benefit is ruled out of consideration. We are conscious of the fact that DLA is overwhelmingly used by people who are under 65, and obviously care needs are overwhelmingly for people who are older."

To see a transcript of the most relevant section of the Lords debate, click here. To view the full transcript on the health debate on Hansard, click here.

Warning over unlicensed herbal valium

Wed, 28 Oct 2009 12:00:00 +0000

The Medicines and Healthcare products Regulatory Agency (MHRA) this month issued a press release warning people of the dangers of taking unlicensed herbal medicines containing aconite.

Aconite has recently been portrayed in the media as ‘herbal valium’, however, it is actually an extremely poisonous plant that is toxic to the heart.

It is also known as monkshood and herbal products containing this ingredient could be fatal or cause serious illness if consumed.

The MHRA has received two reports of suspected adverse reactions to aconite, one where a patient suffered kidney problems and another where the person was hospitalised after suffering dizziness and paresthesia.

MHRA Head of Herbal Policy, Richard Woodfield, said it was vital people did not confuse herbal medicines and homeopathic ones:

“Registered homeopathic products that contain aconite are considered acceptably safe as the active ingredient, aconite, is sufficiently diluted.

Herbal medicines are made from plants and so can have a very significant effect on the body. In certain cases, such as with aconite, the medicine can be extremely potent.

This is a classic case where ‘natural’ does not mean ‘safe’."

Mr Woodfield said recent media attention focused on a celebrity who allegedly took a product containing aconite to calm wedding day nerves.

“With unlicensed herbal medicines, people need to be aware that the standards vary widely and can be poor. However, an increasing range of herbal medicines made to assured standards are available on the UK market.”

Registered and licensed herbal medicines can be identified by the traditional herbal registration (THR) or the product licence (PL) number on the label.

Registered homeopathic products can also be identified by checking the label which should say ‘Homeopathic medicinal product without approved therapeutic indications’, as well as a homeopathic registration number prefixed with the letters HR.

Any side effects to herbal and homeopathic products can be reported to the MHRA via the Yellow Card Scheme http://yellowcard.mhra.gov.uk/.

DLA saved for some

Tue, 27 Oct 2009 12:00:00 +0000

Health secretary Andy Burnham MP has said that he has ‘heard the concerns and worries about disability living allowance’.

He has announced that:

“I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.”

However, Attendance Allowance (AA) and DLA being provided for anyone over-65 are still under threat with proposals in the Government's Green Paper on reforming social care.

Although a claim for DLA has to be made before you are 65, if you are awarded it on an indefinite basis, you will currently continue to receive it after 65. The current propsals mean that this could now stop as soon as you reach your sixty-fifth birthday.

It was made clear by Mr Burnham that there will be no transitional protection of existing awards for current claimants. Instead, ‘an equivalent level of support' will be provided by your local authority.

However, this does not take into account that currently DLA can be spent as needed and not just on social care. Many people use it to fund private treatments such as ongoing physiotherapy that reduce their need for social care.

The petition asking the Prime Minister to recognise the vital support that Attendance Allowance (AA) and Disability Living Allowance (DLA) provide to disabled people, and to ensure that these benefits are secured and are not removed as part of any future reform of the social care system in England, now has nearly twnety thousand signatures attached to it.

Click here to sign the petition.

You can download the Green Paper and Supporting documents here. The relevant section of the full Green Paper is on page 102-103.

You can respond to the consultation online, by email or by post. Full details on how to do so are available here.

The organisation BenefitsandWork.co.uk is highlighting the potential issues from the Green paper. You can view BenefitsandWork.co.uk's FAQ on the issue and sign up to their campaign here.

New Campaign for Yellow Card Scheme

Fri, 20 Nov 2009 12:00:00 +0000

The Medicines and Healthcare products Regulatory Agency (MHRA) have launched a new, targeted campaign to increase public awareness of the Yellow Card Scheme.

The Yellow Card Scheme is the UK scheme for the reporting of side effects of medicines. Further information on the Yellow Card Scheme is available on the MHRA website here.

Patient reporting of side effects to the Yellow Card Scheme was officially launched in 2008 and patients have been shown to make a valuable contribution. We are keen to further encourage patients, parents and carers to report side effects using the scheme. All reports are monitored for potential safety issues, so increased reporting to the scheme helps the MHRA protect public health.

The Medicines and Healthcare products Regulatory Agency (MHRA) is the government agency which is responsible for ensuring that medicines and medical devices work, and are acceptably safe.

Yellow Card leaflets have been distributed to GP surgeries and pharmacies across the UK. This is supported by poster displays and the information video below, which is encouraging reporting to the scheme abd is being shown in a number of GP surgery waiting rooms.

June Raine, Director of Vigilance and Risk Management of Medicines said:

“It is vitally important that we continue to raise awareness of the Yellow Card Scheme amongst the public and encourage reporting of side effects. We hope this new, targeted campaign will increase patient and public engagement, and we look forward to seeing the results translated into more effective medicines safety systems.”

Patient, parents and carers are all encouraged to report adverse drug reactions using the Yellow Card Scheme website www.yellowcard.gov.uk, by completing a Yellow Card leaflet, or telephoning freephone 0808 100 3352.

Dangers of buying illegal medications online highlighted

Thu, 19 Nov 2009 12:00:00 +0000

The Medicines and Healthcare products Regulatory Agency (MHRA) has announced that an international week of action targeting the online sale of counterfeit and illicit medicines has highlighted the dangers of buying such medicines online.

Due to an ever-increasing number of websites supplying dangerous and illegal medicines, INTERPOL and the World Health Organisation’s (WHO) International Medical Products Anti-Counterfeiting Taskforce (IMPACT) have this week co-ordinated 24 countries to launch Operation Pangea II.

National medicines regulators, police and customs have extensively collaborated in this global campaign. The MHRA is the government agency responsible for ensuring that medicines and medical devices work, and are acceptably safe.

The operation focused on the three principle components of an illegal website, the Internet Service Provider (ISP), payment systems and the delivery service.

Global awareness campaigns are planned to make sure patients realise that purchasing medicines from unregulated websites significantly increases the risks of obtaining counterfeit, sub-standard and dangerous products.

In the United Kingdom, enforcement officers from the Medicines and Healthcare products Regulatory Agency (MHRA) raided suspected premises in London, Chelmsford, Romford, Bristol, Brighton, Stoke-on-Trent, Leicester and Shrewsbury. Three arrests were made, six websites have been closed down and £300,000 worth of illicit medicines were seized, as well as quantities of controlled drugs.

The types of medicines the MHRA found included those for erectile dysfunction, hair loss, contraception, weight loss, pain relief, asthma, local anaesthesia and steroids.

MHRA Head of Enforcement, Mick Deats, said that what often looked like a professional online pharmacy would turn out to be an illicit website selling fake or illegal medication.

"This week we have recovered a range of different medicines that were being supplied with no prescription and stored in unacceptable conditions by persons unqualified to dispense medicines. ...

These websites often look like the real deal, but if they don’t carry the green cross logo of the Royal Pharmaceutical Society of Great Britain (RPSGB) and have a ‘bricks and mortar’ address, then they are often dealing illegally.

The dangers of purchasing medicines from unregulated websites are that you just don’t know what you are taking. The dosages could be either too high or too low, contain no pharmaceutical ingredient or a totally different ingredient to that stated. Illegal suppliers have no quality control or standards to abide by and people who purchase medicine from these sources will never know where the tablets they are putting in their mouths have actually originated or what they contain.

Mr Deats went on to add that:

“If customers could see the filthy conditions in which some of these medicines were being transported, stored and handled, they wouldn’t touch them.”

If you feel that your medicine may be counterfeit, contact the MHRA’s dedicated 24 hour anti-counterfeiting hotline on 020 7084 2701 or by email to counterfeit@mhra.gsi.gov.uk.

Disability Benefits update

Mon, 23 Nov 2009 12:00:00 +0000

Following the furore over a suggestion in the Government Green Paper, Shaping the Future of Care Together, that Attendance Allowance (AA) and Disability Living Allowance (DLA) should be scrapped to pay for care reforms, ministers finally confirmed last month that DLA for those people of working age would not be scrapped.

You can read more on this decision here.

However, AA and DLA for the over-65s are still under threat. The consultation period for the Green Paper has now closed, but campaigning carries on.

The Mail Online reported last week that a disabled Labour MP is leading a backbench rebellion against Ministers' plans to scrap benefits for needy pensioners. Read more here.

Tory health spokesman Andrew Lansley said he would keep the two allowances if the Conservatives win the general election next year.

The Conservatives are currently running a petition in support of keeping the benefits in place. Click here for more information on this petition.

A petition on the Number10.gov.uk website, submitted by Peter Hand of Mencap, calling on the Prime Minister to recognise the vital support that Attendance Allowance (AA) and Disability Living Allowance (DLA) provide to disabled people, and to ensure that these benefits are secured and are not removed as part of any future reform of the social care system in England, now has over 22,000 signatures. However, this petition will end on 7 December 2009. Click here to sign this petition (British citizens & residents only).

A similar petition on the same website calls for the same thing in Scotland. Click here to sign this petition (British citizens & residents only).

For further information, see:

Help us by Sending E Cards this Christmas

Mon, 23 Nov 2009 12:00:00 +0000

Save money, save paper and help support FibroAction by sending e-cards for Christmas.

FibroAction are one of the charities that can benefit from EveryClick's 'Christmas? Considerate Done' campaign, running for its second year.

It’s really simple: you select a card, add a personal message including an optional image and video clip, make a donation and then book a day to have Santa deliver it to all your friends nearer Christmas. Being able to add a YouTube clip means you can even send video messages to friends & family around the globe!

Christmas cards generate up to 20,000 tonnes of waste each year (based on data from Defra). Giving through EveryClick means you can send your contacts a menaingful greeting without filling up their recycling bins.

On average, charity Christmas cards give just 10% of their cost to charity (based on data from the Charity Advisories Trust). With EveryClick, 121%* of the amount you donate will get to the charity you choose. This Christmas it really is possible to spend less and give more.

The minimum donation is only £5 and for that you can send a Christmas card to up to 100 recipients.

To take advantage of this scheme, go to EveryClick's Christmas page here.

Help make Christmas 2009 be about spending less and giving more.

Help 2 million plus people in the UK affected by Fibromyalgia Syndrome benefit from your Christmas Cards by selecting FibroAction as the charity recipient of your donation.

* Using Gift Aid means that for every pound given, your charity will receive an extra 28p from HM Revenue & Customs, helping each donation go further at no cost to the donor. For further information please see Everyclick's Terms and conditions.

Update on the FibroAction e newsletter

Mon, 23 Nov 2009 12:00:00 +0000

Following our problems earlier this year with the e-newsletter, we're still working on improving the system for getting them sent out. If you have registered for the e-newsletter, you should have received one at the beginning of November.

Some people have contacted us saying they haven't received that e-newsletter. If you didn't get an e-newsletter from us at the beginning of November, please contact us on info@fibroaction.org and let us know.

One change from the old system is that the e-newsletter is now sent in the format as being from "On Behalf of Lindsey at FibroAction [newsletter@fibroaction.org]" so some of you may need to re-set email filter settings.

View the latest e-newsletter online here. Please note that we're still working on the layout with the new system!

If you haven't registered for the e-newsletter and would like to get monthly updates sent to your email account, click on the link on the right to register. Please note that although you need to register a password, the log-in option is currently only for website admins.

UK Fibromyalgia Support Group Directory updated

Fri, 11 Dec 2009 12:00:00 +0000

The FibroAction Support Group Directory has recently been updated. Check out the Support Group Directory on the Patient Section or click the link on the right.

FibroAction are happy to help publicise any local support group for people with Fibro through publishing their details in the Suport group Directory.

If you run a support group for people with Fibromyalgia Syndrome (Fibro) and would like your group's details to be publicised here, please contact the admin team. Include the group's name, the area it covers, a website address if you have one, at least one method of contact and any details (such as of meetings) that you would like listed. We only ask that, if the group has a website with a links page, a link to FibroAction's website is added to that page.

If your local group is not listed, why not make the group leader aware of this free publicity opportunity for the group?

FibroAction takes no responsibility for any actions arising from the listing of contact details and we remind group leaders to be careful about what contact information they supply. FibroAction will endeavor to ensure that contact details are not supplied without the knowledge of the group contact, but this cannot be guaranteed. If, at any time, you would like your details to be edited or removed, please contact the web admin.

FibroAction does not control these support groups and takes no responsibility for their actions. However, any concerns should be raised with the web admin.

Support the Prescription Promise Campaign

Mon, 14 Dec 2009 12:00:00 +0000

The Prescription Promise Campaign is calling on Gordon Brown to keep the promise he made in his speech to Labour Party Conference 2008 to abolish prescription charges for people with all long-term conditions.

As of the 1st April 2009, people with cancer no longer have to pay for prescriptions. This is wonderful news, but many more people in need are still waiting. There is plenty of evidence that many people with long-term conditions currently struggle to afford their prescriptions, and often choose not to fill prescriptions because of the cost.

The Prescription Promise Campaign is currently officially supported by 20 UK charities. FibroAction supports the principles of the campaign and we are waiting to hear whether our public support of the campaign would help at this stage.

The Prescription Promise Campaign is calling on the Government to set a clear timetable for implementing free prescriptions for everyone with a long-term condition before the next election.

You can lend your support to the campaign by emailing your MP and signing The Prescription Promise Campaign petition. To do so, or to get more information, please see the Prescription Promise Campaign website here.

FibroAction supports the UK Fibromyalgia Alliance

Mon, 11 Jan 2010 12:00:00 +0000

FibroAction are proud to support the UK Fibromyalgia Alliance, a new intiative proposed by UK Fibromyalgia, who produce FaMily magazine.

The UK Fibromyalgia community is currently quite complicated. There are two national charities: FibroAction & FMA UK. There is UK Fibromyalgia, producing FaMily magazine. Then there are also over 100 dedicated local & regional Fibromyalgia support groups, working tirelessly to help sufferers and raise awareness. These support groups are all independent charities, whether they are registered charities or not and whether they are working with a national charity, the NHS or completely independently. There are also a number of other commercial organisations, such as the UK FM/ME Clinics, who have been working to raise awareness of Fibro.

UK Fibromyalgia have proposed the set-up of a UK Fibromyalgia Alliance, which they and we hope can become the rallying point for all the various individuals, groups and charities in the UK Fibromyalgia community. If a majority of the UK Fibromyalgia community make a strong commitment to a common set of aims, then politicians and the medical community will have to sit up and take notice of the agenda we set.

The UK Fibromyalgia Alliance will be made up of member organisations, all with their own structure and tasks, but who agree to work together to promote the aims and objectives of the Alliance, within a transparent and accountable structure.

As part of this, The UK Fibromyalgia Alliance Manifesto has been proposed, which is detailed below.

The UK Fibromyalgia Alliance Manifesto

Aims

That all people with Fibromyalgia in the UK should have access to the mechanisms needed for fast and accurate diagnosis.
That all people with Fibromyalgia in the UK should have access to effective, evidence based treatments.
That all people affected by Fibromyalgia in the UK should not be subject to discrimination because of the condition, including discrimination by employers, medical professionals or the state.

Objectives

To create an Advisory Board for the UK Fibromyalgia Alliance made up of Advisory Board Members, advisers and experts from the member organisations, so that all these experts can benefit the whole UK cause and community.
To develop an evidence-based integrated care pathway (ICP) for the diagnosis and treatment of Fibromyalgia in the UK. This would involve organising a task force of Alliance members and Advisory Board members to oversee the development of the ICP. (An ICP is a multidisciplinary outline of anticipated care, placed in an appropriate timeframe, to help a patient with fibromyalgia move progressively through a clinical experience to positive outcomes. Within the NHS, ICPs are published in a consistent form through the Map of Medicine, which all NHS staff will have access to. They will also be available through the NHS CHOICES site.)
To work to get the Fibromyalgia ICP accepted by the UK medical profession and the NHS. This would probably be through a combination of publicity, events, use of current contacts and working with the All Party Political Group (APPG) for Fibromyalgia.
To develop basic evidence-based information on Fibromyalgia that is agreed by the Advisory Board of the UK Fibromyalgia Alliance, that can be published by the Alliance members jointly and that can be used by any advisory members as the basis for their own information packs (i.e. a consensus on Fibromyalgia that can be used so we are all "singing from the same hymn sheet").
To work to get regional Fibromyalgia multidisciplinary clinics set-up across the UK.

If you run a UK Fibro charity, support group or related commercial organisation and your organisation agrees with the principles below, then you can also sign up to the UK Fibromyalgia Alliance through the UKFibromyalgia.com website here.

Principles of the agreement when signing up to the UK Fibromyalgia Alliance
(note: "We" refers to your charity or organisation):

We agree with the Aims of the UK Fibromyalgia Alliance.
As a member of the UK Fibromyalgia Alliance, we will work to promote the Objectives of the UK Fibromyalgia Alliance.
We agree to share relevant, appropriate and non-confidential information with the rest of the UK Fibromyalgia Alliance in order to promote the Objectives of the UK Fibromyalgia Alliance and work towards the Aims of the UK Fibromyalgia Alliance.

UK Fibromyalgia Alliance update

Wed, 10 Feb 2010 12:00:00 +0000

FibroAction, Fibromyalgia Association UK and UK Fibromyalgia agreed at a recent meeting that, although we are all in support of the principles behind the proposed Fibromyalgia Alliance, the practicalities of this initiative would have caused too many logistical issues for all the organisations involved.

However it has focussed a renewed ambition to work more closely, in harmony, towards the aims as laid out by the proposed Alliance.

A consensus to produce an Integrated Care Pathway (ICP) collaboratively and to promote this through the channels of all three organisations, with a view to it being widely adopted, was agreed as the best way forward.

An ICP is a multidisciplinary outline of anticipated care, placed in an appropriate timeframe, to help a patient with fibromyalgia move progressively through a clinical experience to positive outcomes. Within the NHS, ICPs are published in a consistent form through the Map of Medicine, which all NHS staff will have access to. They will also be available through the NHS CHOICES site.

Once we have an approved ICP all three organisations will work to get the Fibromyalgia ICP accepted by the UK medical profession and the NHS. This will probably be through a combination of PCT trials, publicity, events, use of current contacts and the use of the All Party Political Group for Fibromyalgia.

We will update you on the progress of this initiative when we can.

Government Petitions Needing Your Signature

Tue, 16 Feb 2010 12:00:00 +0000

Here is a round-up of the petitions on the Number10.gov.uk website that relate to Fibro that need your "signature".

Any petition that has reached more than 500 signatures by the time it closes will receive a response from the Government, sent by email to all who signed that petition.

You must be a British citizen or resident to sign any of these petitions.

Chronic pain and chronic fatigue cause incapacity for work

Petition deadline: 02 August 2010

Petition: We the undersigned petition the Prime Minister to recognise specifically that chronic pain and chronic fatigue cause incapacity for work.

Details: Sufferers of chronic fatigue syndrome, fibromyalgia, hypermobility syndrome, and other such chronic conditions can go through periods when their ability to function is severely impaired. The current rules for claiming ESA do not recognise the validity of myalgia, arthralgia, malaise or severe sleep disruption. This causes distress and humiliation for sufferers who are often forced to appeal decisions, or to work when unfit thereby causing themselves further health problems. We ask that this family of incapacities be correctly recognised so that people who experience chronic pain and chronic fatigue can claim ESA when they need it.

Click here to sign this petition.

Fibro training for A&E consultants

Petition deadline: 03 February 2011

Petition: We the undersigned petition the Prime Minister to Demand Fibromyalgia flare up training for all A+E consultants in the U.K.

Details: A petition to make sure that all accident and emergency consultants are given better training on Fibromyalgia, and the symptoms a major flare up creates.

We also demand that consultants stop forcibly discharging us from our hospital beds; just because the illness shows on no tests, does not mean the patient is making it up.

If we are brought in to an A+E department, we expect those looking after us to know about our illness.

We do not expect to have to educate the medical profession ourselves, when we're at our sickest and feeling awful.

We do not expect to have to fight for basic care and treatment, just because a consultant has never heard of Fibromyalgia and would rather dismiss us, than seek further knowledge.

Click here to sign this petition.

Make the DLA application process fairer for Invisible Conditions

Petition deadline: 04 February 2011

Petition: We the undersigned petition the Prime Minister to Make The D.L.A. Application and Decision Process Fairer To People With Invisible Illnesses.

Details: Fibromyalgia and Hypermobility Syndrome are amoungst many invisible illnesses that claimants of D.L.A. suffer from. They are as disabling as other conditions, but we are made to go through extrordinary steps to ensure we are 'belived' and they it does not ensure we will be awarded it.

Click here to sign this petition.

Petition to get more disabled models in ad campaigns

Tue, 16 Feb 2010 12:00:00 +0000

Another petition you may be interested in signing...

We the undersigned petition high street retailers in the UK
to involve disabled models in their advertising campaigns

In the special editions of How to Look Good Naked … With a Difference, presenter Gok Wan joined forces with Naked Ambassadors Natasha Wood and Nikki Fox in a mission to convince retailers that disability can sell fashion.

To show your support in getting disabled models to feature in high street advertising, then please take a couple of moments to sign the petition.

Click here to sign the petition

Compiling a List of NHS Fibro Clinics

Sun, 28 Feb 2010 12:00:00 +0000

Do you attend an NHS clinic or course for Fibro patients? If so, we'd like to know about it!

There are quite a few NHS Fibro clinics around the UK, often set up by rheumatology departments in NHS hospitals, but we rarely get to hear about many of them. Here at FibroAction we're trying to compile a list of all Fibro specific services available on the NHS. However, there isn't a central database of Fibro specific NHS services and getting information from individual PCTs can be a slow process. So if you know of a NHS service - e.g. a clinic or course - specifically for Fibro patients, that is not listed below, or if you spot anything incorrect in the list below, please contact us with details.

Please note that, at this stage, we're only looking for information on clinics or other services (e.g. condition management courses) that are just for Fibro patients, not general services such as a department that treats Fibro patients mixed in with other patients.

NHS Fibro-specific clinics & services:

Guy's Hospital, London

Run by Prof John Davies.

Poole Hospital

Run by Dr Selwyn Richards

Salisbury Hospital

Run by Dr Richard Smith. Physio, OT & hydrotherapy available in department.

Bolton Hospital

Run by Dr K Adams. Multi-disciplinary course available for Fibro sufferers.

Response to Dr Crippen Guardian article mentioning Fibromyalgia

Thu, 04 Mar 2010 12:00:00 +0000

On Tuesday March 2nd, the "Dr Crippen" column in the Guardian newspaper had an article about the prevalence of whiplash injuries being diagnosed, in which derogatory comments were made about Fibromyalgia Syndrome (Fibro).

The insinuation of the article was that Fibro is not a real condition or a valid diagnosis.

Click here to read the article on guardian.co.uk.

"Dr Crippen" is the pseudonym of an anonymous and often controversial blogger, supposedly a GP principle with 20 years experience working somewhere north of London, just outside the M25. As well as writing the column in the Guardian, he blogs at the NHS Blog Doctor weblog, where his even less restrained articles are usually rants about the NHS and patients.

On Tuesday, he posted about the article in the Guardian, under the title Fibromyalgia : "whatever that is". In this post, he made it clear that his views on Fibro are bigoted and outdated and, having complained about "bad medical science" in the Guardian article, proceeded to "cherry-pick" a selection of Google search results on Fibro to back up his views.

Using a selection of internet search engine results from varying sources, such as Wikipedia, is never a good way to get reputable, evidence based medical information, something that one would hope a GP would be aware of.

In his blog article, "Dr Crippen" refers to the NHS Choices website information on Fibro and then proceeds to completely ignore what is said there, presumably because the evidence based information doesn't agree with his outdated views.

Fibromyalgia Syndrome is most definitely a real condition and this is not something that is genuinely debated by educated and up-to-date healthcare professionals. The increased pain response or hyperalgesia that characterises Fibro has been demonstrated using fMRI* (functional MRI) and this is just one of the many evidence based pieces of information to support our view.

If you would like to complain about the Guardian article, complaints can be sent to the office of the Guardian readers' editor at reader@guardian.co.uk.

FibroAction have sent a complaint and we are waiting on the Guardian to respond (or not) before we escalate this matter to the Press Complaints Commission. The more complaints that are made formally, the more weight our complaint will have so please email in a response rather than just commenting on the website.

* Reference: Gracely RH, Clauw DJ et al. Functional magnetic resonance imaging evidence of augmented pain processing in fibromyalgia. Arthritis Rheum. 2002 May;46(5):1333-43.

International Internet Study seeking participants

Wed, 05 May 2010 12:00:00 +0100

Participants are being sought to take part in a large-scale international internet questionnaire study about understanding and lack of understanding for rheumatic diseases, including Fibro.

Researchers at Universities in Utrecht (The Netherlands), Detroit (USA), Coïmbra (Portugal), Marburg (Germany), Ghent (Belgium), and Barcelona and Jaén (Spain) are collaborating on the study, which is funded by the Dutch Arthritis Association.

Patients with rheumatic diseases report that lack of understanding for their illness is an important issue in their lives. Researchers call this lack of understanding by others ‘invalidation’. The aim of this study is to examine how much understanding and invalidation by others is experienced by people who have a rheumatic disease. The researchers also want to examine the consequences of this understanding or invalidation and compare this between different countries.

Patients with any rheumatic disease can fill out a questionnaire on the internet in their own language, which will take approximately 20 minutes. Participation will be voluntary and anonymous

If you want more information or want to participate, please click on the following hyperlink: www.lackofunderstanding.nl.

May update for the Directory of UK Fibro Support Groups

Fri, 28 May 2010 12:00:00 +0100

The FibroAction website Support Group Directory has recently been updated again.

Details have been added for another two groups:

Aberdeen and District Fibromyalgia Support Group

Walsall ME Link

Walsall ME Link has been running as an ME Support Group since 2000 but as so many members have a Fibro diagnosis as well, the group now offers support for Fibro sufferers as well. Click on the group names above to see further details for each group.

Group details have also been updated for:

Blackburn Fibromyalgia Support Group

Havering and Redbridge Fibromyalgia Support Group

The Blackburn Fibromyalgia Support Group has a new telephone number and a new group leader, Yvonne Booth. The Havering and Redbridge Fibromyalgia Support Group has updated their contact details.

Here at FibroAction we're working on upgrading the Support group Directory, so if you run a local support group in the UK for people with Fibro, then now is a good time to get your group details listed on the FibroAction website.

Any UK group can have their details listed in the Support Group Directory - it's just a free publicity opportunity to make it easier for Fibro sufferers to find your group.

FibroAction does not control these support groups and takes no responsibility for their actions. However, any concerns should be raised with the admin team.

Tickets available on door for lecture this evening

Fri, 01 Oct 2010 12:00:00 +0100

Some tickets will be available on the door (£4 each, cash payment only) for this evening's lecture:

Unraveling the Mystery of Fibromyalgia:
The Critical Role of Positional Cervical Cord Compression (PC3)

An accredited* lecture by US expert Andrew J. Holman MD
Organised by FibroAction & the Fibro Support Group North Surrey

So if you would like to come along, but haven't yet bought a ticket online, please do.

For full details, see here.

Donating Blood with Fibro

Wed, 17 Nov 2010 12:00:00 +0000

Following the recent introduction of the ban on blood donation by people with CFS/ME, Lindsey Middlemiss, founder & chair of FibroAction, wrote to the Department of Health asking for clarification of the position regarding blood donation from patients with Fibro, especially given the overlapping symptoms of the two conditions and the fact that many people in the UK are given a dual diagnosis.

We have now had a reply to this query. The letter from Dr Barnes, Associate Medical Director - Donors, of NHS Blood & Transplant, is reproduced below for your information.

Dear Ms Middlemiss

Thank you for your letter of 27 September, regarding the new restrictions for blood donation by patients with ME/CFS and their relevance to patients with Fibromyalgia Syndrome. Colleagues at the Department of Health have passed on your letter and asked me to respond directly to answer your query.

The change to the donor selection guidelines regarding ME/CFS came into force on 1st November 2010. The amendment has been made on the grounds of donor safety, to bring practice for those with ME/CFS in line with other conditions where individuals are permanently excluded from blood donation to protect their own health and other serious central nervous system disorders. This follows a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC).

There is a separate entry in the donor selection guidelines for fibromyalgia. This is because unlike ME/CFS, fibromyalgia is not currently classed as a relapsing condition or a central nervous system disease by the World Health Organisation, but as a musculoskeletal condition. At present, a donor with fibromyalgia would be accepted as long as they were well at the time and did not have any additional features of ME or Chronic Fatigue Syndrome. I understand that most fibromyalgia patients report that their symptoms do not improve over time. Therefore the condition is classed as chronic rather than relapsing and as such at the present time does not attract a lifetime deferral from blood donation, although given the debilitating nature of the condition it is doubtful that there are many sufferers who are ever well enough to donate.

The Department of Health's independent Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO) and the National Expert Panel on New and Emerging Infections (NEPNEI), monitor developments, both nationally and internationally, in conjunction with the UK Blood Services and the Health Protection Agency. All risk assessments are regularly reviewed, and if new evidence comes to light which means that risk assessments need to be amended, then this is done.

I hope this information is helpful in addressing your query.

Yours sincerely
Dr S M Barnes FRCP FCEM
Associate Medical Director - Donors

Lindsey Middlemiss on maternity leave

Mon, 29 Nov 2010 12:00:00 +0000

Lindsey Middlemiss, the FibroAction founder and chair, is now on maternity leave, preparing for the birth of her first child in December.

Lindsey normally answers a lot of the email & telephone queries, as well as updating the FibroAction website. While she is on maternity leave, these services will be covered, but there may be some delay in getting a response if you contact us directly. Please bear with us at this time.

Update

Zoë Catherine Middlemiss was born on 10th December 2010. After a difficult start, Lindsey and Zoë are now both doing very well.

Lynn Diggins joins the board of trustees of FibroAction

Fri, 26 Nov 2010 12:00:00 +0000

We are delighted to announce that Lynn Diggins has joined the board of directors/trustees of FibroAction.

Some of you may already know Lynn through her work leading the Fibro Support Group North Surrey or through her work with the Fibromyalgia Support Group for Surrey and Sussex. Lynn also did a lot of the work organising the recent lecture at Kingston Hospital by FibroAction PAB member Dr Andrew Holman.

For more information on how FibroAction is set-up, please see our Governance section.

New Fibro Support Group for north Cornwall

Wed, 02 Mar 2011 12:00:00 +0000

Following requests by a number of people with Fibro, mental health charity Rethink are supporting the set-up of a support group for people with Fibro and/or CFS/ME in Wadebridge, North Cornwall.

They are holding a meeting this month to discuss the set-up of the group. If you are interested in attending or helping organise such a group, please come along to put forward your views and ideas at: 3pm on Monday 21st March at:

Rethink Cornwall Services
The Betty Fisher Centre
Southern Way
Wadebridge
PL27 7BX

Call Anne Doherty at Rethink on 01208 815676 or 07918 727 031 for more information.

Online Survey on the Impact of Living with Invalidation of Fibromyalgia

Mon, 07 Mar 2011 12:00:00 +0000

People diagnosed with Fibro are being sought for an online questionnaire as part of a research project looking at the impact of living with invalidation of Fibro.

Many people with Fibro struggle because their friends, family or even doctors may not see Fibro as a valid diagnosis. We therefore ask that you support this research project by taking the time to complete the online questionnaire.

Here is some information from researcher Caroline Kenny:

Research Brief

My name is Caroline Kenny and I am conducting a Doctoral research thesis at the National University of Ireland Galway on the Impact of Living with Invalidation of Fibromyalgia. The purpose of the research is to understand more about the impact on people with Fibromyalgia, of experiencing a lack of understanding about, or discounting of, their condition by others, including family, work colleagues and medical professionals. It is hoped that this research will contribute to raising awareness of this topic.

Your participation, by completing the online questionnaire will be anonymous, and will be invaluable in contributing towards a better understanding of this topic. This will take 35 minutes.

A summary of the study results will be made available, through FibroAction, in September 2011 for anyone who has taken the survey or who is interested reading research on this topic.

Please click on or copy the link to your web browser to access further information and the online questionnaire:
http://www.surveymonkey.com/s/53LSLWG

Thank you for your time and important contribution to this research study. The online survey will close on April 25th.

Caroline Kenny, BA, Psychologist in Clinical Training, National University of Ireland Galway (DPsychSc)

Portsmouth Rheumatology collecting Tesco Vouchers

Wed, 25 Apr 2012 12:00:00 +0100

The Portsmouth Rheumatology department are once again collecting the Tesco Vouchers for Schools and Clubs.

Over the past four years the department have exchanged the vouchers to obtain equipment for the childrens hydrotherapy group and the Rheumatology Education and Childrens Hospitality (REACH) Project.

If you are interested in supporting their collection, please send any 2012 Tesco vouchers you have to:

Valerie Robins
c/o Rheumatology Department
Queen Alexandra Hospital
Cosham
PO6 3LY

Arthritis Research UK survey on the impact of Personal Health Budgets

Thu, 08 Sep 2011 12:00:00 +0100

Arthritis Research UK are asking for people with musculoskeletal conditions, including Fibro, to complete a survey to help them with a project working to understand the potential impact of Personal Health Budgets on people with musculoskeletal conditions.

A personal health budget aims to allow people to have more choice, flexibility and control over the health services and care they receive. At the heart of a personal health budget is a care plan, the agreement between the primary care trust and the individual that sets out the person’s health needs, the amount of money available to meet those needs and how this money will be spent. The initiative, which has already been introduced for social care, is being trialled at 61 sites, 20 of which are described as “in depth” pilots. Invitation to join the trial was launched in 2009. About 1,500 patients, most with long term conditions, have so far been recruited. As musculoskeletal conditions have not been specifically considered in the piloting, Arthritis Research UK will use this survey to identify the issues raised by people with arthritis or musculoskeletal conditions as one way to bring their needs to the attention of the Department of Health.

The survey is available online at:

www.arthritisresearchuk.org/personalbudgets

FibroAction have been asked to publicise the survey as FibroAction is a member of ARMA, the Arthritis & Musculoskeletal Alliance.

Petition urging NICE to approve Benlysta

Mon, 17 Oct 2011 12:00:00 +0100

Benlysta is the first new drug for Lupus in 52 years and it has already been approved as a treatment for Lupus by the US Food and Drug Administration (FDA).

The United Kingdom's National Institute for Health and Clinical Excellence (NICE) recently released its preliminary recommendation to NOT cover the cost of Benlysta(R) through the National Health Service. As well as denying people with Lupus in the UK the chance to try this new treatment, NICE's preliminary recommendation could have a devastating international impact on the survival of this important new treatment, and it may have a chilling effect on the future development of new Lupus drugs thereby denying physicians and patients appropriate treatment options.

There are many people with Fibro who also have Lupus or who have relatives and friends that do. This is an important drug. One day it could be one of our drugs they are turning down.

Join us in our call to action by urging NICE to recommend that the United Kingdom's National Health Service provide coverage of Benlysta(R) by joining this petition:

www.thepetitionsite.com/1/cover-Benlysta

FibroAction Becomes Information Standard Accredited

Wed, 28 Dec 2011 12:00:00 +0000

A statement from FibroAction founder & chair, Lindsey Middlemiss:

I am delighted to announce that FibroAction has been successful in its application to become an Information Standard accredited information provider.

The Information Standard scheme was developed by the Department of Health to help the public identify trustworthy health and social care information easily. At the heart of the scheme is the standard itself – a set of criteria that defines good quality health or social care information and the methods needed to produce it. To achieve the standard, organisations have to show that their processes and systems produce information that is:
•accurate
•impartial
•balanced
•evidence-based
•accessible
•well-written.

For more information on the Information Standard, please see The Information Standard Website.

Making up-to-date evidence-based information about Fibro more readily accessible has been a core aim for FibroAction since its inception. The accreditation with the Information Standard proves that our information on Fibro is good and will be of help when trying to reach more healthcare professionals, especially within the NHS.

The accreditation process was very tough and I am grateful for the help provided, not just by the Board of FibroAction, but also from volunteers, PAB members and my own family, to enable the work to be done.

The accreditation is only really the start. Over the next year, you can expect to see our About Fibro information thoroughly reviewed and further information resources will also be produced. All information resources reviewed or produced under our new Information Production System, which fall within the Scope of the Information Standard for FibroAction, will carry the Information Standard Quality Mark.

We will also be reviewing and updating the FibroAction website, and you can expect to see some old and outdated sections of the website start disappearing shortly, as well as new sections being brought in.

As part of the new Information Production System, we are formalising how people help us with information provision and are bringing new volunteers onto our team. We had an excellent response to our request for volunteer lay reviewers, but are still looking for further volunteer Resource Writers and volunteer Researchers to bring on board in the future. These volunteers are needed to help us with the more time-consuming work of going through the published research, and seeking expert and patient contributions, to form the evidence basis for our Information resources. I am hoping to get more information about these roles on the website soon, but if you have a good understanding of the importance of evidence based information and attention to detail, and feel you would like to help in either of these roles, please do contact me via info@fibroaction.org.

I'm really excited about what this news means for FibroAction and for Fibro, now and in the future.

~Lindsey Middlemiss

Help by signing the Prescription Charges Coalition Petition

Wed, 04 Jan 2012 12:00:00 +0000

Freeze the cost of prescriptions – sign our petition now!

The Prescription Charges Coalition, of which FibroAction is a member, has been campaigning for a number of years for prescriptions to be made free to people with all long term medical conditions.

In September 2010, the Government stated that they would not introduce free prescriptions but would look at ways to introduce ‘more fairness’ in the system.

We believe the Government has an opportunity to do more to help people with long term conditions who are struggling to afford their medicines in the current difficult economic climate.

This is why the Prescription Charges Coalition is now calling on the Government to freeze the cost of prescriptions until the end of the Parliament.

As many people with long term conditions use Prescription Prepayment Certificates (PPCs) to spread the cost of their medicines and save money, the Prescription Charges Coalition is also calling for the Government to continue last year’s freeze on the cost of PPCs until the end of the Parliament.

Finally, we want the Government to work towards making prescriptions free for people with long term medical conditions in the future.

You can help by signing the Prescription Charges Coalition's e-petition: epetitions.direct.gov.uk/petitions/25087.

You can also help spread the word by joining our The Prescription Charges Coalition's Facebook Causes page.

Aberdeen Fibromyalgia Support Group Celebrates its 10th Birthday

Mon, 07 May 2012 12:00:00 +0100

Aberdeen Fibromyalgia Support Group celebrates its 10th birthday this year and they have sent us this information on their planned celebrations.

Aberdeen Fibromyalgia Support Group Celebrates its 10th Birthday

2012 is a special year for Aberdeen and District Fibromyalgia Support Group as we are celebrating our 10th Birthday. We have been working hard in planning our celebrations. On Saturday 12th May we will be holding our celebrations at Union Square shopping centre in Aberdeen from 10am - 4pm.

The main aim of our celebration is to raise awareness of fibromyalgia and awareness of our support group. Along side this we also plan to have lots of fun with balloons, face paints, musicians, arts and crafts, and much more. There will also be a chance to win a hand-decorated new born doll and hand made designer teddy, both donated by fibromyalgia suffers.

Our group has been running for 10 years and in this time we have had many people come to us for help, support or advice and we hope to continue to do so for the next 10 years. We cover a large geographical area and we continue to try help and support as many sufferers as we can.

All welcome to join us in our celebrations.

Contact details for Aberdeen Fibromyalgia Support Group can be found here.

International Fibromyalgia Awareness Day

Sat, 12 May 2012 12:00:00 +0100

May 12th is International Fibromyalgia Awareness Day, raising awareness of this condition around the world. Fibro affects around 2 million people in the UK, but most of the general public will never have heard of it.

If you are looking for simple ways to raise awareness, see this article on our FibroAction.HealthUnlocked community.

Or why not raise awareness by wearing a FibroAction t-shirt or using a FibroAction tote-bag, available from our Spreadshirt store?

You can help FibroAction to better raise awareness of Fibro by fundraising for us. There are some ideas of what to do for fundraising here.

For information on Fibro, see the About Fibro section.

If you are struggling with getting a diagnosis or treatment from an NHS GP, then the NHS Choices information on Fibro may be of use.