ME Advocates Ireland (MEAI)'s Position on Label (name) and Diagnostic Criteria (case definition)

Label

 

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 Criteria

ME Advocates Ireland (MEAI) believe that case definitions for clinical practice 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.

 

International Consensus Criteria (ICC) 2011

The International Consensus Criteria (ICC) which insisted that CFS should not be considered a diagnostic entity and that ME is a specific diagnosis requiring thorough patient history, examination, and testing.

Many worldwide experts on Myalgic Encephalomyelitis (ME), including Ireland’s Prof Austin Darragh (RIP) came together and produced comprehensive diagnostic criteria called the International Consensus Criteria (ICC) (2011).

The International Consensus Criteria (ME-ICC) advocates for removing fatigue as a characteristic symptom and defines the disorder as an acquired neurological disease with complex global dysfunctions.

The ME-ICC was developed for both clinical and research use and includes considerations for diagnosing children and adolescents.

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);
• immune,
• 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.

Myalgic Encephalomyelitis International Consensus Criteria

International Consensus Primer 2012

In 2012, the ICC authors provided a condensed version to offer as physician's guidelines, i.e., the International Consensus Primer (ICP)

The ICP states:  "Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the International Consensus Criteria (ICC) because a distinctive disease entity should have one name."

The ICP approach makes sure no patient is seen as too challenging to accurately assess.

The ICP was written to provide clinicians a one-stop, user-friendly reference for ME. It includes a concise summary of current pathophysiological findings upon which the ICC are based. A comprehensive clinical assessment and diagnostic worksheet enables clear and consistent diagnosis of adult and paediatric patients world-wide.

The treatment and management guidelines offer a blueprint for a personalized, holistic approach to patient care, and include non-pharmaceutical and pharmaceutical suggestions. Patient self-help strategies provide recommendations for energy conservation, diet, and more.

Educational considerations for children are included.

The ICP specifically targets primary care clinicians, as well as specialists in internal medicine. Other medical care practitioners may find it helpful.

The ICP stems from wide international research and hundreds of thousands of hours of clinical investigations, all relevant to ME.

Myalgic Encephalomyelitis - Adult & Paediatric International Consensus Primer for Medical Practitioners

HSE Position

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.

Further Reading

The Case Definition Quagmire Surrounding ME Remains an Urgent Challenge

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