Gino Kenny (Dublin Mid West, People Before Profit Alliance) | Oireachtas source

I welcome everybody in the Public Gallery to this important debate. I thank the Business Committee for agreeing to take statements on fibromyalgia, which is an important subject. I presume this discussion has been arranged on foot of the motion on the issue I submitted last week. I am disappointed with the number of Deputies who have turned up thus far. Many people are watching and listening to this debate and, more important, waiting to find out what the Government will do to address the issue. It means a great deal to many people who have this condition and they want to know what we, as legislators, will do.

For far too long, there has been an unhealthy silence on conditions such as fibromyalgia and myalgic encephalomyelitis, ME, which are all too invisible in the case of those who live with them. Although this is a cliché, people look perfectly healthy but inside they have to suffer from the chronic pain and fatigue that comes with fibromyalgia. While this debate has moved on in recent years, people who suffered from fibromyalgia, particularly women who are more often affected than men, were written off medically as hypochondriacs or, worse, people suffering from psychosomatic disorders. This was an insult to the sufferer and the condition.

I thank Ms Rachel Lynch and Ms Ursula Hakman from FibroIreland who have helped me understand fibromyalgia. I did not have much knowledge of the condition or of ME. Through their knowledge and experience, they have helped me and others to gain a greater understanding of the condition. I hope today will be the beginning of a much wider debate on fibromyalgia and its recognition as a disability in the State. Bizarrely, given the current discussions on Brexit and the artificial Border in this country, fibromyalgia has been recognised as a long-term condition in the North since 2016. If fibromyalgia can be recognised in the occupied part of Ireland, why can this State not recognise it? There is an ongoing debate in Britain on its recognition and while it is progressing, it has not yet gone far enough. Fibromyalgia must be recognised as a disability as this would result in patients having better access to services and medications and better dealings with the social welfare system. There are horror stories about people with fibromyalgia and ME being put through the ringer by the system. If fibromyalgia is not considered to be severe enough, the sufferer has to fight the system, which can make the condition even worse for those who live with it.

Other Deputies alluded to the long-term illness scheme. It is extraordinary that not one condition has been added to the scheme for 49 years. Surely fibromyalgia fits the bill for being added to the long-term illness scheme. The only reason I can think of that it is not on the long-term illness scheme is funding. It is as simple as that. While those with the condition may have a GP-only medical card, they must cover other expenses such as therapy and medications. It is ridiculous that the scheme has not been extended in 49 years. While that is a separate issue, it is incredible. Fibromyalgia is recognised as a condition in France and has been included on the country's long-term illness scheme, which means patients can get medication and so on.

There is major misunderstanding of this condition and addressing that is half the battle. The reason for this debate is to create a greater understanding of the condition because misunderstanding compounds fibromyalgia. To dismiss the condition is unforgivable.

I am no expert on fibromyalgia and I can only try to put myself in the shoes of somebody who has worked with chronic pain and fatigue. I cannot imagine that kind of constant pain. Relying on opiate-based medicine is not desirable and the long-term side-effects are completely detrimental. Alternative medicines should be found, particularly for treating chronic pain. Other Deputies have implied that it is extremely disappointing that with respect to chronic pain and the proposed access programme, medicinal cannabis was not suggested as a treatment. That is extremely disappointing.

I hope we can get one thing from this debate. We can have flowery debates and great speeches with nothing ever happening. After these statements, will the Minister of State meet a representative of each party so we can progress this matter? We are Deputies representing many people in this country who have fibromyalgia. Will the Minister of State meet representatives of each party in the next two to three weeks?

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