I need to make it clear that I am not so unfortunate as to have been a sufferer from fibromyalgia. I am writing this more from the point of view of a doctor who has been involved in the care of people with the illness.
I worked as a full time GP in south east London from 1976 until 2006 when I retired from my practice. I then moved to the West County where I undertook part time locum work in both rural and urban settings until I reached the age of 65.
Curiously I cannot recall seeing a single case of fibromyalgia when I worked in London, nor talking with any patient who thought they might have the condition. I was nevertheless aware of it from my regular reading of medical journals. When I moved to Wiltshire I began to see cases quite regularly and quickly familiarised myself with current thought about the condition, and its treatment.
Casual enquiry among professional acquaintances as to why this geographical discrepancy might be resulted in the rather surprising answer that one of the local consultants in rheumatology had a particular interest in the disease. Patients were given the diagnosis and returned to their GP practices for further follow up. The GPs became aware of it and no doubt read further about the condition and picked up cases of their own. Curiously, these patients were then referred to the consultant for confirmation of the diagnosis. I say ‘curiously’ because the means by which a diagnosis is reach is partly a process of exclusion of other conditions, and then by a medical history and a standardised examination, all of which are well within the competence of a GP to carry out. No expensive or hazardous investigations are involved. And in most cases, once a diagnosis in given, the patients are referred back to the GP without further follow up from the specialist. Treatments offered are all available in a primary care setting. So it is not immediately clear why a specialist is involved at all, either with the diagnosis or management. It may be a matter of legitimacy – it is a life changing disease that usually runs a chronic course. Many sufferers are unable to work because of their symptoms and may have to be in receipt of benefits for many years. These are serious implications, and it may be speculated that the opinion of a specialist is needed to give weight to the diagnosis.
Of course, there is a lot that remains unknown about the condition, and treatments may sometimes be disappointingly ineffective. For this reason there is general agreement that much more research into the condition is required. Such research is usually carried out in specialist units. But I myself do not recall that any of my patients had been invited to participate in a clinical trial of any sort.
There is still a great deal that needs to be learned about fibromyalgia in terms of its cause, the nature of its pathology and best management of the condition. On the assumption that it is a real entity and one disease it simply cannot be that it is not within the scope of scientific investigation to answer these questions.