About Myalgic Encephalomyelitis (ME)

Saturday, 6 November 2021

National ME Survey by ME Advocates Ireland

 

Are you a person with ME or caregiver?
We need your help!

Take part in ME Advocates Ireland - MEAI’s national ME survey to help guide development of healthcare pathways for ME.

The survey is open to anyone in Ireland who has direct experience of #ME

Request survey pack by email please to address:
info@meadvocatesireland.com



In an effort to include your voice and perspective to identify the burden of Myalgic Encephalomyelitis (ME) and explore the needs of all people living with ME and their caregivers ME Advocates Ireland (MEAI) are conducting a comprehensive survey which is now available to complete.
The results of the survey will help us to lobby for services for people with ME and will inform our ongoing advocacy work. It will also provide evidence of where there are gaps currently in healthcare and service provision, and guide plans for the development of much needed services.
The information gathered will offer ME Advocates Ireland an evidence-based platform to campaign on your behalf. It is therefore important that we get as many responses as possible – this is a vital opportunity for people with ME and caregivers to have their voices heard and make their needs known. We would appreciate your time and feedback.
An estimated 10,000 – 19,000 people in Ireland live with Myalgic Encephalomyelitis, a disabling WHO classified neurological condition. Despite this, there are no healthcare pathways, no specialist services, and no guidelines. Very few medics are aware of ME and the more profound symptoms associated with it. The effects of ME can leave the most severely affected patients completely without specialist home services.
Through this survey we hope to raise awareness around the less visible aspects of ME and how it can impact on the day-to-day life of a person living with the condition. It is so important that everyone in the community of people living with ME in Ireland feel that their condition is properly understood and adequately managed by the medical community.









People with ME are suffering endlessly and needlessly without hope of appropriate healthcare services, treatment, empathy or respect.
Faultless knowledge via language - spoken, written, and pictorial - as well as compassion and understanding need to be visible.
Take part in ME Advocates Ireland - MEAI’s national ME survey to help guide development of healthcare pathways for ME.
The survey is open to anyone in Ireland who has direct experience of #ME
Request survey pack by email please to address:
info@meadvocatesireland.com



More information re the National ME Survey
Thanks to those who have already returned the Survey, and thanks to those who are pacing themselves and currently working through it. Please take your time and pace yourself.

We know a few people have returned their Consent Form but are still waiting for their Survey Pack, they will be posted or emailed soon.

Survey Consent Form
If you have already requested a Survey Pack and have been waiting for your Consent Form by email and have not received it yet please check your spam folder for an email with that attached.
Don’t hesitate to get in touch at info@meadvocatesireland.com if you can't find it.


Request a Survey
If anyone hasn’t heard about the national ME Survey or wants to get involved please get in touch.
You can request a hard copy of the Survey sent by post or a Word Doc copy by email which you can complete electronically.
Please contact us at info@meadvocatesireland.com if you are interested.


We need a much greater input from Guardians/Parents of children with ME so that the challenges and often desperate situation facing so many families is well represented.
We are ensuring we have a wide range of feedback. Looking forward to hearing from you.


Thank you for your support.
MEAI Survey Coordinators



Compiled by MD



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