Sufferers can spend years going backwards and forwards to their GP with what seems to be many different conditions.  During this time their general health often deteriorates, employment may become difficult or impossible and friends and family can become increasingly frustrated and unsupportive.  Of course there are instances where diagnosis is made fairly quickly, within a year, but the majority of those we hear of can take 3 -5 years. Diagnosis of fibromyalgia is just the beginning of the problems. 

Once diagnosis is made, there is still the minefield of treatment options.  At worst some patients are still being told, “There is nothing that can be done; there is no cure; learn to live with it. It’s psychological – all in your mind.”  At best there are one or two centres that offer a range of managing and coping strategies using pain relief units, physiotherapists, counsellors, hydrotherapy and other treatments.  Unfortunately most of the alternative therapies are in the private sector and sufferers are unable to finance these long term or even short term.  There are also many hospitals with very good supportive departments but, unfortunately, this is a postcode lottery.

The European League Against Rheumatism (EULAR) has issued the first guidelines for the treatment of fibromyalgia syndrome (FMS) and published them in the September 2007 issue of the Annals of Rheumatic Diseases.   This 9 point plan covers the treatment and diagnosis of fibromyalgia. Whilst these guidelines are not yet adopted by the National Institute for Health and Clinical Excellence (NICE), they can be seen as a significant step forward.

We need to raise the profile of fibromyalgia in order to persuade decision makers to adopt these guidelines officially so that full treatment programmes can be made available to all sufferers throughout the UK.

Recent e-petitions to the No. 10 Downing Street website have raised the question of treatments and the government responses have indicated that it is up to each PCT to decide priorities for their area but, without clear national guidance, fibromyalgia mostly slips to the bottom of the list if it is considered at all.

Fibromyalgia sufferers deserve a voice and deserve to be listened to.

For more information about FMA UK, see www.fmauk.org.

ENDS

Contact: pressenquiries <at> fmauk.org