Thursday 25 January 2018

About 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 state services, resources and welfare entitlements for people with Myalgic Encephalomyelitis (ME). 

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: 

    • bring about the recognition of ME as a chronic physical illness;
    • educate the general public and medical professionals about ME and about the issues of those affected;
    • represent the interests of ME patients in HSE guideline development and policy;
    • advocate on behalf of patients 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;
    • networking with other ME organisations 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 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 and surveys.
Our pages can also be a place for people affected by 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 at the top of the home page by clicking on the ‘Home’ bar at the top of the 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.

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.

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, 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 that people in Ireland have been diagnosed with the CFS or ME/CFS labels.

What Is Needed in Ireland

Bring about a National ME Policy/Clinical Guidelines
Adopt the International Consensus Criteria to include Accurate Diagnosis 
Include ME in all Teaching - GPs, Nursing, Social Care
Train Health Professionals - all Acute & PCCC Staff
Gp Awareness - Design Specialist Training Modules for 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

How to get involved

  • Please support our posts on social media by liking, commenting & sharing.
  • Please take part in any of the surveys or questionnaires we create & publish.
  • You are welcome to leave feedback and share your own experiences with us privately if you wish to by email to 

If you need support or need to contact us for other reasons

  • Please contact us if you suspect you have ME and need support on what to do next, or if you have any other query. You can email us at or send a private message via the message button on our facebook page here

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, & Profound ME.

Thank you for visiting our webpages which function as a supportive information & educational portal 

We remember those in the International ME community who have died

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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