ME Advocates Ireland (MEAI) advocate for the adoption and use of the Myalgic Encephalomyelitis (ME) label. We do not recognize CFS as per Fukuda, ME/CFS as per the Canadian Consensus Criteria (CCC), or SEID (NAM) as an accurate diagnosis for ME and believe that the quagmire of the above mentioned criteria and other various criteria available worldwide has led to confusion, lack of healthcare and treatment, and lack of sufficient research on ME, however
- we acknowledge that people with ME or CFS in Ireland have been diagnosed with either the ME or CFS label or both, i.e. ME/CFS;
- we acknowledge that others in Ireland and elsewhere use the CFS and ME/CFS labels and we do not wish to withhold support from those who have been given a diagnosis of CFS, or ME/CFS;
- we appreciate that the CFS label is used to refer to ME in general in other countries but are unsure if those that are diagnosed with CFS are actually receiving appropriate treatment;
- we recognise that the CFS or ME/CFS label is used throughout international research but again are not sure what patients are being identified for research purposes and on what criteria their diagnosis is based;
- we acknowledge that conflated labels such as ME/CFS and CFS/ME are used by others though we do not use them, or advocate for their usage;
- we recognise that the CFS/ME label is mostly used by the psych cabal and associates who have caused so many issues around ME for decades;
- we recognise that it is critical that there is more biomedical research to further investigate and validate our understanding of ME and to increase knowledge of the different sub-groups of ME.
Diagnostic CriteriaME Advocates Ireland (MEAI) believe that case definitions for should
- be research based,
- validated and manageable to provide a tool which can relieve patient's uncertainty,
- indicate the most appropriate treatment and prevent adverse effects and waste of healthcare resources of unnecessary treatment and diagnostic procedures,
- be founded on available knowledge regarding the mechanisms of the actual condition,
- be validated through credible and transparent processes and presented in a format which can be implemented in everyday practice.
In the absence of HSE ME Guidelines it is our opinion that the International Consensus Criteria (ICC) and Primer (ICP) are the best current case definition and guidelines currently available.
ME Advocates Ireland (MEAI) advocate for the adoption and use of the International Consensus Critera (ICC) 2011 along with the follow up document, the International Consensus Primer (ICP) 2012 for diagnosis, testing, treatment and management suggestions. We think the ICC and the ICP are the best tools to assess and manage ME. More about these below.
The ICC defines specific symptom requirements:
- post-exertional neuroimmune exhaustion (PENE),
- neurological impairments (which encompass neurocognitive impairments; pain; sleep disturbance; and neurosensory, perceptual, and motor disturbances);
- gastrointestinal and genitourinary impairments,
- energy metabolism impairments.
It is important to note that the 6/4/3-month waiting time for diagnosis as per other case definitions is dropped in the ICC, i.e. there is no minimum time and ME can be diagnosed immediately, a very important thing when we consider that delay in diagnosis prevents relevant management and symptom treatments which inevitably leads to a decline in health with worsening of illness.
The ICC includes operational notes for each of the symptom criteria.
We have repeatedly asked that the HSE adopt and use these criteria and guidelines, or at the very least provide links to make them easily available on the HSE website.We have also asked the chief clinical officer (CCO) to provide a statement to attest to the appropriateness and relevance for their adoption and use until such a time that we have our own HSE ME clinical guidelines.Currently the Chief Clinical Officer is supporting the development of a HSE Clinical Guideline for ME and a Clinical Guideline Development Group was established in 2022.
Here is the HSE's Letter re the new guideline group.