Eugene Murphy (Roscommon-Galway, Fianna Fail) | Oireachtas source

In 1992 fibromyalgia was formally recognised and included within the World Health Organization international classification of diseases. In July 2017 after the successful efforts of the Patient and Client Council of Northern Ireland the condition was declared a long-term disability in Northern Ireland and on 15 January 2019 recognition of fibromyalgia as a disability in the rest of the UK was debated in Westminster. Fibromyalgia is part of the wider spectrum of chronic pain conditions. It can be described as nerve dysfunction resulting from amplified processing of pain and sensory information. There is no cure for fibromyalgia. It is a lasting, life-long condition. Patients experience many different symptoms. The main symptom is widespread chronic pain which is very severe in many cases. Patients also experience severe debilitating fatigue, which is not to be confused with being tired but can be compared to what can be experience during a severe flu-like illness. It is not relieved by sleep.

Another symptom is what is commonly known as fibrofog, which describes cognitive issues such as memory problems, short attention spans, difficulty with focus and concentration, problems with word finding and slow speech. Patients often suffer from migraines, restless leg syndrome, irritable bowel syndrome, being unable to regulate their body temperature, hypersensitivity to sound, smell, light and other sensory information. Depression and anxiety often result as the condition can be very difficult to live with. It is not known how many people in Ireland suffer from fibromyalgia as there is no register. We need this to be resolved as soon as possible. The establishment of a register is of upmost importance, and financial assistance from the State is needed. Globally an estimated one in 20 people is affected, although numbers are likely to be higher. Fibromyalgia is an invisible disability which often makes it extremely difficult for patients to experience recognition by their families, work colleagues, neighbours and even their spouses and partners. Many patients are unable to work and depend on financial support, but they face enormous difficulties when applying for social welfare benefits. This must urgently be addressed as it causes enormous stress which is detrimental to the condition, causing a vicious cycle.

Fibromyalgia is a life-long chronic debilitating condition rendering many people unable to work thus rendering them financially dependent on the support of their families. It is neither recognised as a disability in Ireland nor is it recognised on the long-term illness list. The long-term illness list has not been changed in the past 40 years. Fibromyalgia emerged as a condition which absolutely deserves to be placed on this list. It is an extreme, demanding, expensive illness, and self-management including multi-disciplinary support is expected from the individual patient. I cannot understand how patients are expected to fund these treatments advised by the HSE itself.

On 11 July 2012 a group of fibromyalgia representatives briefed the Joint Committee on Health on fibromyalgia. On 24 January 2018 fibromyalgia advocates held a presentation in the AV room in Leinster House. Concerns may have been taken on board but nothing has happened and nothing has changed. Until recently the Department of Employment Affairs and Social Protection had protocol 6 accessible online, but this protocol has since disappeared. It discussed chronic pain and fibromyalgia in detail over 63 pages. One part mentioned fibromyalgia. It said that fibromyalgia is a chronic condition. Although symptoms may vary in intensity the condition is unlikely to completely resolve.

The Disability Act 2005 defines disability as "a substantial restriction in the capacity of the person to carry on a profession, business or occupation in the State or to participate in social or cultural life in the State by reason of an enduring physical, sensory, mental health or intellectual impairment". Fibromyalgia can render patients incapable of work, leading a normal social life and caring for their families. Severely affected patients may be unable to leave their house to walk, to shop or to drive, let alone to work to enable them to gain financial independence. These patients fulfil the definition in the Disability Act 2005 in every sense.

I ask for the Minister of State's support to have fibromyalgia classified as a disability. I have never had any doubt about her sincerity, as she is a very sincere person, but her Department and her senior Minister need to take this matter on board. There is a certain habit of mocking this situation which we must get out of. We must understand that many people suffer from this illness.

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