Please Support Our ME Community's Open Letter to the HSE

   

Urgent Call to Action for the Creation of an HSE Protocol for Severe Myalgic Encephalomyelitis (M.E.)

A Call to Action was launched during M.E. Awareness Month 2024. ME Advocates Ireland (MEAI) in association with the M.E. community and others drew up the Call to Action.

For those with Severe M.E., the consequences of the illness are particularly devastating & incredibly complex, with multiple unalleviated symptoms, all ability denied & reliant on extensive 24 hour expert support for even basic daily activities.

Despite the severity & prevalence of M.E., there is a glaring absence of a specific protocol within the national health agency, the HSE, to cater to the complex needs of individuals with Severe M.E.

We are writing to the HSE as patients, carers & advocates on behalf of individuals suffering from Severe M.E., urging the establishment of a dedicated HSE protocol to address the unique needs of this at-risk patient population.

ME Advocates Ireland (MEAI) is supporting the call as people with Severe M.E. are at higher risk of being harmed while in hospital or in other care settings and require specialised support.

A protocol would provide information to help doctors and other healthcare professionals to manage the reasonable adjustments essential in the care and management of individuals with Severe Myalgic Encephalomyelitis (ME), and to facilitate the plan for their care while in hospital, for their hospital discharge and for the care that follows the discharge.

The reality is that harm, deterioration and death in cases of Severe M.E. are preventable but only if individuals are cared for and supported appropriately, which makes it incumbent that the HSE takes steps to implement the recommendations in this Call to Action.

We are asking you to please support the Severe M.E. Community's Call to Action by signing their Open Letter here.

You can read a summary of the ME community's Open Letter if you are unable to read the longer one; please open the summary here.

 

Three Notes for You:

1. You need to verify you signature in the email account you used to sign the Open Letter

2. Our Open Letter was created by our M.E. community who have provided an extensive evidence base relating to healthcare issues among the M.E. and Severe M.E. community in Ireland, through feedback conveyed to us of their personal experiences via various channels. Thanks to our M.E. community.

3. Our letter builds on an original piece by ME Foggy Dog & Stripy Lightbulb to address the issues around the lack of protocol for those with Severe M.E. in Ireland. Thanks to ME Foggy Dog and Stripy Lightbulb.

Thank you for your support