Following Recommendations for Action to Support those Living with ME, the HSE has set up a Working Group on ME.

Update May 2019 on
‘Recommendations for Action to Support those Living with ME’

Written/compiled by Christine Fenton 

Last September we posted ME Advocates Ireland founder member Christine’s story of her experience of Myalgic Encephalomyelitis (ME) & of her journey with the HSE acute & community services which resulted in an Independent Investigation. See HERE

This 2018 blogpost concluded with

‘Good news for the ME community:

The investigation report, gives thirty-three report recommendations, the three most relevant to the ME Community are:

10.R9. It is recommended for the HSE that a working group be established to consider the development of a national guidance document for ME.  It is also recommended that as part of the remit of this working group, protocols for ME patients can be developed for consideration by the HSE to be formalised as consumer protocols for ME patients.

12.R1. It is therefore recommended that a national guidance document for ME should be developed by the HSE to provide information and guidance regarding the condition together with information in relation to the care and support available through the HSE for its sufferers.  To develop this guidance document, a working group to include relevant stakeholders should be established.

8R.1. It is recommended that there should be a standardisation of assessment tools and methodology for ME sufferers in all CHOs.  Any assessment process used for the purposes of reviewing a service user’s care plan should be relevant to the needs of the service users to appropriately & adequately assess their needs.  There should be uniformity in the assessment models used in each community health area.

My sincere hope is that the implementation of these recommendations will result in a constructive partnership between Consumers living with ME & the HSE, as they learn to work collaboratively, to make life with ME a supported journey, with hope, as biomedical research continues to uncover the causes of ME & hopefully, in the near future, effective treatments.

In light of these recommendations there is the possibility of increased hope, an essential human need, for all those in the ME community.’

Christine Fenton third from left at the AV Room Presentation in Dáil in Jan 2018 with other members of MEAI

Today’s news:

The HSE has set up a Working Group on ME.

The first meeting will take place on May 16^th, 2019.

Christine says:

I believe this is a start, a step in the right direction for change to happen. 

We all need to take any opportunity the Working Group offers for Service User/Patient engagement forums to use our voices so the HSE learns to understand our lived experience and what we need from the HSE. 

This is the time for everyone affected by ME, children and adults, across all levels of severity, mild to profound, Carers, friends & relatives who see the devastation ME causes to speak out about the reality of life with ME at any and every opportunity available.

Finally, the HSE has turned an ear towards us, let us make use of this opportunity by using our voices.

Join us on May 14^th outside Leinster House or send a ‘tag’ which tells your story, let us use this event to cast off the cloak of invisibility the HSE & Government have shrouded us in for so long.

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ME Advocates Ireland (MEAI) will continue to call on the HSE and the Government for change for ME until the needs of people with ME are met.

MEAI will back Christine all the way & hope the Working Group will finally open the door to enable us to receive the care we need.