Today is the 25th anniversary of International ME Awareness Day. The PCC first became involved with this long-term condition in 2013 following a fibromyalgia/ME focus group as part of the People’s Priorities report process. Head of Operations, Louise Skelly, recounts the journey to date.
Myalgic encephalomyelitis, or ME, has been classified by the World Health Organization as a chronic, neurological condition with physical symptoms that can be as disabling as multiple sclerosis, rheumatoid arthritis and congestive heart failure.
Over the past few years it has been a privilege for me to work alongside patients, carers and the parents of children who have ME or Chronic Fatigue Syndrome (CFS), helping them to raise awareness of their needs and to have their voice listened to in health and social care.
This has not been an easy journey as patients with CFS/ME find it difficult to get many professionals to truly understand the full impact of the illnesses on their daily lives. They understand that there is no quick fix and it is fair to say that scientific research and evidence on diagnosis and treatment is still in its infancy.
Patients and their loved ones who are living with difficult symptoms for years on end can sometimes feel very desperate and lonely. As with other long-term conditions, doctors are the ones they turn to, but science hasn’t been able to provide the much-needed answers yet. However, when every day of their lives is difficult, patient and their carers get frustrated by the slow progress sometimes.
It is estimated that some 7,000 patients in Northern Ireland have CFS/ME and yet there is no dedicated medical lead to provide advice and support to patients, carers and GPs.
There is also evidence to suggest that many patients have a wrong diagnosis. Patients feel that good medical care is essential to support them to deal with their condition.
In recent months, agreement has been reached to appoint a part-time medical lead, and patients are currently working on the development of a job description and specification before the post goes out to recruitment.
Patients feel this role is hugely important to the development of a proper service for their diagnosis, treatment and care.
CFS/ME patients are among the most informed group of patients we have had the privilege to work with. This is largely because there is no medical leadership. They wish to be partners in their medical care, but don’t want to be left alone.
Patients have found peer support and local support groups and charities a huge lifeline, a listening ear. They provide information for those that need it so they can try to live with a reasonable quality of life.
Patients with ME/CFS aren’t asking for a cure. They are asking for basic healthcare.
For further information on ME/CFS, go to http://bit.ly/2r70ZjV
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