About UK Fibromyalgia

The independent voice of Fibromyalgia in the UK

When FaMily Magazine launched in 1999 it was independent of any other fibromyalgia affiliations but later we set up a partnership with the Fibromyalgia Association UK. As part of that agreement I committed to donate a percentage of the FaMily Magazine net profits back to the Association and to distribute their specific FMAUK news at no cost to themselves, within the pages of FaMily Magazine.

Over the years this relationship bloomed and together we ensured that FaMily Magazine contained all the international, national and local news that affected fibromyalgia sufferers and was always on your doormat, month in and month out.

The Fibromyalgia Association UK informed me in 2010 that they were ceasing that relationship.

Over the last 10 years the world of fibromyalgia has changed, there are now 2 national UK registered charities and 6 local FM charities helping the fibromyalgia cause, all with different agendas for local and national issues, and all doing marvellous work.

Unfortunately this splintering can mean an overall national message can be overlooked. An example is that there are many support groups throughout the UK but it is difficult for newly diagnosed sufferers to find their closest support group because there is no complete listing of all groups.

From 2010 UK Fibromyalgia will have no ties to any one charity but instead will work with all groups and all charities to provide an independent overview for Britain’s FM community. I will work non-stop to make FaMily the independent voice for all Fibromyalgia sufferers in the UK.

AIMS

1) That all people with Fibromyalgia in the UK should have access to the mechanisms needed for fast and accurate diagnosis.

2) That all people with Fibromyalgia in the UK should have access to effective, evidence based treatments.

3) 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

1) 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 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.)

2) 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 use of the All Party Political Group for Fibromyalgia.

3) To work to get regional Fibromyalgia multidisciplinary clinics set-up across the UK. In 2007 The European League against Rheumatism (EULAR) suggested that optimal treatment requires a "multidisciplinary approach with a combination of non-pharmacological and pharmacological treatment modalities tailored according to pain intensity and function. Associated features such as depression, fatigue and sleep disturbance should be in discussion with the patient".

Martin Westby
Managing Editor