Sunday 9 October 2022

Summary of the Issues around Myalgic Encephalomyelitis (ME) in Ireland

Despite Myalgic Encephalomyelitis (ME) affecting thousands* of people in Ireland of which 25% have a severe form, clinicians lack the knowledge to appropriately diagnose and manage ME. Unfortunately, clinical guidance has been scarce, obsolete, or potentially harmful. Consequently, patients remain undiagnosed, and those with a diagnosis often receive inappropriate treatment.

We need to get recognition and education about Myalgic Encephalomyelitis (ME) across all healthcare services

.... for patients to be accorded the same basic human rights and health equity given to other illnesses.

For that to happen ME guidelines must be developed by the HSE, guidelines that truly capture the illness and the issues experienced by the ME community in Ireland, where relevant stakeholders are included, and most importantly the patient community has an equal say to evidence their illness and issues associated with ME.

The public and patient partnership we have experienced in other areas of the HSE has met expectations of patients being involved in policy and organisational decision making, it has shown positive partnership with patients and the public and inclusion in participatory spaces that share decision-making power to inform design and policy, a very welcome and important process that must be mirrored and is essential to bring about relevant policy for the Myalgic Encephalomyelitis (ME) community in Ireland.

There has to be shared responsibility, where patient and public representatives, health care professionals, academics, and leaders work in partnership, successfully embracing essential public and patient involvement – following a person-centred healthcare culture set up with the purpose of increasing understanding of service user needs and essential to creating a more responsive policy and greater health equity for people with ME.

We need to see an end to the mistreatment and abuse of people with Myalgic Encephalomyelitis (ME), including children who have been threatened with removal from families and referred to harmful exercise therapy.

We call on the HSE to include the expert patient voice, across all severities, through adult and paediatric ME, especially the voice of those with severe ME including very severe and profound ME. It’s important that it is seen as the ME communities ask and not just MEAIs.

It’s not enough to copy NICE (UK) because those UK guidelines are far from perfect and still tied up with psych interference. NICE does not explain ME in the way the ICC does, NICE does not provide a picture of ME to those who have no concept of ME.

While we wait for the development of Irish guidelines we ask the HSE to adopt and use the International Consensus Criteria and Primer which rigorously refer to Myalgic Encephalomyelitis (ME) and include essential guidelines on diagnosis and management.

* It is estimated tat there are somewhere between 10,000 and 19,000 people living with ME in Ireland going by international prevalence rates

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