ME Advocates Ireland (MEAI)
ME Advocates Ireland (MEAI) founded in 2017, are a non-profit volunteer advocacy group who are committed to changing the healthcare provision for those with ME in Ireland by promoting
greater understanding and education re ME in the general public, medical
profession and health services, the HSE and Dept of health and others, with the aim of bettering conditions for people with ME.
ME Advocates Ireland (MEAI) is concerned about the adequate provision of specialist state services, resources and welfare entitlements for people with Myalgic Encephalomyelitis (ME).
In Ireland in 2024, there are an estimated 10,000 to 21,000 people living with M.E. These figures are extrapolations based on a comparison of prevalence rates worldwide as there is no official collation of data on prevalence of ME in Ireland. (International prevalence rates used are 0.2 - 0.4%)
Where services, resources and welfare entitlements are unavailable, inaccessible, or under threat of being taken away, ME Advocates Ireland (MEAI) aims to highlight these inadequacies in the hope that the situation is improved in favour of the person with ME associated illness and disabilities.
Our main goal is to ensure that people who suspect they have ME receive adequate screening, care and treatment using the methodologies outlined within the International Consensus Criteria and Primer.
Our other goals:
- to bring about the recognition of ME as a chronic physical multi-system illness;
- to educate the general public, medical professionals, families, carers and others about ME and Severe ME, and about the issues of those affected;
- represent the interests of ME and Severe ME patients in HSE clinical guideline development, policy development and implementation;
- advocate on behalf of patients where we are able, to provide medical, welfare and social care support to ME patients and their families/carers;
- inform ME patients of the latest relevant research studies;
- provide platforms to gather patient feedback to evidence patient issues as well as illness and illness severity, e.g. via survey publications; open letters, etc
- networking with other ME organisations nationally and internationally.
The aims of this web page and our other media pages linked below are to share correct information about Myalgic Encephalomyelitis (ME) and Severe Myalgic Encephalomyelitis, and about appropriate healthcare around ME, as well as links to useful services, including welfare and community services; to let people know when ME Advocates Ireland (MEAI), and other ME organisations, are planning and holding ME related events.Our pages are also be a place for people affected by MEand Severe ME to share experiences and provide valuable feedback which gives us an evidence base from which we work.
How to access information on this web page
Please see the main index to our main posts about ME and Severe ME at the top of the home page.
Our Specific Aims
ME Advocates Ireland (MEAI) are seeking healthcare equality for Myalgic Encephalomyelitis (ME) patients in Ireland by advocating, lobbying, raising awareness & educating about ME and in particular about Severe ME.
Our specific aims and the work we do as a group are centred around the need for
ME Advocates Ireland (MEAI)
ME Advocates Ireland (MEAI) founded in 2017, are a non-profit volunteer advocacy group who are committed to changing the healthcare provision for those with ME in Ireland by promoting
greater understanding and education re ME in the general public, medical
profession and health services, the HSE and Dept of health and others, with the aim of bettering conditions for people with ME.
ME Advocates Ireland (MEAI) is concerned about the adequate provision of specialist state services, resources and welfare entitlements for people with Myalgic Encephalomyelitis (ME).
In Ireland in 2024, there are an estimated 10,000 to 21,000 people living with M.E. These figures are extrapolations based on a comparison of prevalence rates worldwide as there is no official collation of data on prevalence of ME in Ireland. (International prevalence rates used are 0.2 - 0.4%)
Where services, resources and welfare entitlements are unavailable, inaccessible, or under threat of being taken away, ME Advocates Ireland (MEAI) aims to highlight these inadequacies in the hope that the situation is improved in favour of the person with ME associated illness and disabilities.
Our other goals:
- to bring about the recognition of ME as a chronic physical multi-system illness;
- to educate the general public, medical professionals, families, carers and others about ME and Severe ME, and about the issues of those affected;
- represent the interests of ME and Severe ME patients in HSE clinical guideline development, policy development and implementation;
- advocate on behalf of patients where we are able, to provide medical, welfare and social care support to ME patients and their families/carers;
- inform ME patients of the latest relevant research studies;
- provide platforms to gather patient feedback to evidence patient issues as well as illness and illness severity, e.g. via survey publications; open letters, etc
- networking with other ME organisations nationally and internationally.
The aims of this web page and our other media pages linked below are to share correct information about Myalgic Encephalomyelitis (ME) and Severe Myalgic Encephalomyelitis, and about appropriate healthcare around ME, as well as links to useful services, including welfare and community services; to let people know when ME Advocates Ireland (MEAI), and other ME organisations, are planning and holding ME related events.
Our pages are also be a place for people affected by MEand Severe ME to share experiences and provide valuable feedback which gives us an evidence base from which we work.
How to access information on this web page
Please see the main index to our main posts about ME and Severe ME at the top of the home page.
Our Specific Aims
ME Advocates Ireland (MEAI) are seeking healthcare equality for Myalgic Encephalomyelitis (ME) patients in Ireland by advocating, lobbying, raising awareness & educating about ME and in particular about Severe ME.
Our specific aims and the work we do as a group are centred around the need for
• the adoption of the International Consensus Criteria (ICC 2011)
• ME to be included in all medical teaching
• Health Professionals to be trained
• GP awareness
• National Lead for ME
• Clinical Care Pathways for Adults and Paediatrics
Criteria (case definition)
We encourage the adoption and use of the International Consensus Criteria, (ICC) 2011 & the International Consensus Primer, (ICP) 2012 for diagnosis and management of ME, both were specifically written about and for ME, and are based on research on ME.
Criteria (case definition)
We encourage the adoption and use of the International Consensus Criteria, (ICC) 2011 & the International Consensus Primer, (ICP) 2012 for diagnosis and management of ME, both were specifically written about and for ME, and are based on research on ME.
Label (name)
We do not recognise CFS as per Fukuda, ME/CFS as per the Canadian Consensus Criteria, or SEID (NAM) as accurate diagnoses for ME/Severe ME, and we believe that the criteria/case definition quagmire has led to confusion, lack pf appropriate healthcare, and lack of research on ME. However, we acknowledge and respect the fact that people in Ireland and elsewhere have been diagnosed with the CFS or ME/CFS labels.
What Is Needed in Ireland
Bring about a National ME Policy/Clinical Guidelines
What Is Needed in Ireland
Bring about a National ME Policy/Clinical Guidelines
Adopt the International Consensus Criteria to ensure Accurate Diagnosis
Include ME in all Teaching - GPs, Nursing, Doctors, Social Care
Train Health Professionals - all Acute & PCCC Staff
GP Awareness - Design Specialist Training Modules for ME & Severe ME
Appoint ME Consultant as National Lead for ME
Clinical Care Pathways - Paediatric & Adult
Contact and Social Media
Please see our other social media pages below & like/follow etc.
Please keep in mind that Facebook, Twitter, Instagram and our web pages (Blog) are set to public by default. You can contact us privately via the various message buttons on our pages, or by email to info@meadvocatesireland.com
How to be involved in the ME community
- Please support our posts on social media by liking, commenting & sharing.
- Please take part in any of the surveys, questionnaires or open letters we create & publish.
- You are welcome to leave feedback and share your own experiences with us privately if you wish to by email to info@meadvocatesireland.com
If you need support or need to contact us for other reasons
- Please contact us if you suspect you have ME or Severe ME and need support on what to do next, or if you have any other query. You can email us at info@meadvocatesireland.com or send a private message via the message button on our facebook page here.
Further Reading
ME Advocates Ireland (MEAI) are continuously and steadily working to get the HSE to adopt the International Consensus Criteria & Primer, and to commit to creating ME clinical guidelines for across all HSE services, i.e., guidelines that capture ME patients of all age groups and all severities. By all age groups we mean Adults & Paediatrics (children & adolescents); by all severities we refer to Mild, Moderate, Severe, Very Severe, & Profoundly Severe ME.
Thank you for visiting our webpages which function as a supportive information & educational portal
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| We remember those in the International ME community who have died |
Disclaimer
Please note that all data on our blog is for information purposes only. The information provided via our blog does not seek to replace the advice of trained medical practitioners and therefore is not intended to be a substitute for professional doctor/patient face to face diagnosis or medical advice. In no way are any of the suggestions presented within this blogs meant to be a substitute for professional care or attention by a qualified medical practitioner, nor should they be construed as such. You should not disregard your own professional medical adviser’s opinion, or delay in seeking such an opinion, because of something you read or anticipate reading in this blog. ME Advocates Ireland (MEAI) are not responsible for any injury, loss, damage or expense incurred by any individual as a result either directly or indirectly of any information published on this blog.
The ME Advocates Ireland (MEAI) blog is a portal for the dissemination of information on ME. Anything appearing on the blog should not be considered an endorsement or recommendation unless specifically so stated.
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