After years of agonising delays, patients suffering from the debilitating ME and fibromyalgia could finally be provided with a tailored treatment programme.
The long-awaited proposal was made by a working committee set up to draw up a strategy for treating sufferers of the two illnesses.
Patients have long been insisting they need a proper treatment plan and, last July, the Health Ministry set up a working committee led by consultant physician Andrew Borg.
The committee was made up of several specialists – including neurologists, rheumatologists, psychiatrists and psychologists – with an interest in the two conditions.
Physiotherapists, occupational therapists, nurses, pharmacists and patient representatives also sat on the committee.
Its proposals are now in the process of being evaluated by the Department of Health.
The proposed treatment plan, seen by this newspaper, maps out a patient pathway based on a structured approach delivered by a multidisciplinary team to evaluate the illness, its impact on the patients and how they cope with their disabilities.
The proposed service is supported by international guidelines.
Until now, such patients went through the normal channels at Mater Dei Hospital and, due to the complexity of their conditions, often went from one specialist to another, adding to their frustration and anguish.
‘Putting patients at centre of treatment’
The patient-centred programme seeks to change this.
The committee has emphasised the need to support and educate GPs and primary healthcare providers about the symptoms and treatment of the conditions to ensure that the right patient is seen by the right specialist at the right time.
It stresses the need for research to understand better the impact of the illnesses on work ability, social functioning and quality of life and their prevalence.
If ME is suspected, the patient would be referred to Mater Dei’s neurology department while suspected fibromyalgia cases go to the rheumatology department.
Once the diagnosis is confirmed, clinicians in either of the two departments would guide patients through a personalised treatment plan.
We need to give the programme a chance to work
Generally, patients will be given medication and referred for therapy to help them cope with the physical, psychological and social aspects of their condition.
An important part of the programme is education and self-management.
Prof. Borg stressed that for the plan to be successful there had to be more human resources at all levels of the chain as well as a financial commitment by the government to fund new medication.
“We are putting the patient at the centre of the treatment plan.
“This gives much more structure and a unique quality of service that is multidisciplinary. We need to give it a chance to work and, if necessary, make improvements along the way,” he said.
Myalgic encephalomyelitis (ME), often referred to as chronic fatigue syndrome (CFS), and fibromyalgia are chronic debilitating diseases that fluctuate in severity.
ME/CFS symptoms are primarily neurological but can also include cardiovascular, endocrine, gastrointestinal and musculoskeletal.
People with fibromyalgia experience pain in their tendons and ligaments, a prominent sleep disturbance and widespread pain and tenderness in their joints and muscles.
Fibromyalgia has some similarities with ME, however, the two conditions are distinct.
The misunderstood conditions have courted controversy because, for many years, there was a debate as to whether they were actually an illness.
In March, the government announced that ME and fibromyalgia were officially recognised as chronic diseases.