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Rare Diseases Strategy

Dáil Éireann Debate, Tuesday - 23 October 2018

Tuesday, 23 October 2018

Questions (102)

Robert Troy

Question:

102. Deputy Robert Troy asked the Minister for Health his plans to address issues in relation to myalgic encephalomyelitis which is a rare disease. [43459/18]

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Written answers

Chronic fatigue syndrome (CFS) / myalgic encephalomyelitis (or encephalopathy) (ME) is a not uncommon, complex debilitating disorder which is characterised by severe fatigue accompanied by a range of other symptoms.

There is currently no known, specific, medical diagnostic test to determine or confirm a correct diagnosis of ME and no specific treatment which works for all sufferers is currently available. Assessment and interventions need to be tailored to the individual. There are assessments/tests which can be carried out in primary care settings by a General Practitioner. Specialised tests may be required when considering differential diagnoses.

Treatment for ME is tailored to address the varying symptoms presented by those affected by ME. In general, these treatments are delivered within the context of primary care, with referrals into secondary care for specialist interventions in the areas of Neurology, Rheumatology, Pain Specialists, Endocrinology, Immunology, Cardiology, etc. The challenge in relation to ME is that it does not sit within one specialty, but crosses a number of specialties, with patients attending different Consultants for management of symptoms as they arise.

Waiting times for access to these services can be lengthy. However, there is currently work under way as part of the implementation of the Strategy for the Design of Integrated Outpatient Services 2016-2020, specifically as regards addressing how and where the patient is treated and the classification of referrals with corresponding clinically recommended time-frames. Consideration is also being given to condition specific referral forms. This work should see significant improvements with respect to access to appropriate services.

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