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Fibromyalgia: Statements (Continued)

Thursday, 4 April 2019

Dáil Éireann Debate
Vol. 981 No. 5

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(Speaker Continuing)

[Deputy Marc MacSharry: Information on Marc MacSharry Zoom on Marc MacSharry] I know from speaking to patients who suffer from illnesses, such as fibromyalgia and Lyme's disease, although I am not making a direct link between the two, they find it insulting when anti-depressants, psychology and psychiatry are mentioned, the implication being that it is all in their mind. People who experience the very real symptoms of these conditions deserve a little more than a prescription for anti-depressants.

  I wish to read into the record an account of a friend of mine who suffers from fibromyalgia. It reads:

 Fibromyalgia means that I cannot live the normal life of a 26 year old. I am in receipt of a disability allowance due to my condition worsening so much as to prevent me from completing my degree in college, maintaining a job and on bad days it prevents me from functioning daily tasks such as have a shower, brush and dry my hair, make meals and sometimes make a cup of tea as the tea cup falls from my grip due to nerve pain.

  I have tested countless prescriptions such as opiates, anti-seizure medication, anti-depressants, benzodiazepines, non-steroidal anti-inflammatory drugs etc. From a very young age my consultants recommended that I have steroid injections, epidurals, rehabilitation surgeries. I have had two surgeries in the space of six years for my pain, the first at the age of 16. These surgeries were both emergencies due to the severity of my pain.

  I have also had two rounds of rehabilitation within four years. I am very aware of what these toxic medications are doing to my body which plays on my mind daily. Devastatingly, my options with pharmaceutical medications are rapidly running out as they are slowly becoming ineffective. My consultant has stated that I have only two options left with pharmaceutical drugs until my options run out. Hearing this is a huge shock, and even more so to a 26 year old who has her whole life ahead of her. It affects my mental health and causes severe anxiety and low moods for which I am also on medication since my diagnosis.

  In regards to new treatments I am depending on medical cannabis to become available in Ireland for fibromyalgia sufferers due to my pharmaceutical drug options running out. I believe that if pain consultant specialists in Ireland were given necessary training and guidelines to treat and monitor, they would be capable to assess the effectiveness of medicinal cannabis treatment for chronic pain sufferers. The HBRA's reasons for not supporting the inclusion of chronic pain is that "chronic pain is common, and the potential use of cannabis-based medicines by a large number of patients, raises concerns about misuse and diversion into the wider community".

 The very high prevalence of chronic pain in Ireland is all the more reason to make new treatments such as cannabinoids with proven efficiency and fewer side-effects available to patients as soon as possible. Also the concerns about misuse and diversion into the wider community, while understandable, are not unique to cannabinoids. They also apply to opiods which have been prescribed for pain for decades. It is a fact that cannabis has significantly less abuse potential than many opiates and significantly less risk of overdose.

My consultant wants to give me the opportunity to try medical cannabis treatment with THC, the pain reliever part of cannabis. CBD will not be enough for me. The Government needs to set up guidelines for him to treat and monitor me safely through blood tests etc. That way I will be using THC safely. The compassionate access programme is not one bit compassionate as it is very restrictive and costly for patients having to travel to get their prescription for THC in the Netherlands. I would not be able to afford it, let alone that my health would not allow me to travel so often. It would also add to my stress levels which will in turn cause more flair ups for me too.

  It is time that we stopped commentating on this matter and make medicinal cannabis available. It is available in the UK, in Northern Ireland, the Netherlands and other countries. Why do we have to bring up the rear in terms of proper treatments?

Deputy Eugene Murphy: Information on Eugene Murphy Zoom on Eugene Murphy 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 utmost 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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