About the International Consensus Criteria (ICC) & Primer for ME

Overview of the International Consensus Criteria & Primer for Myalgic Encephalomyelitis (ME)

 

 

‘The failure to agree on firm diagnostic criteria has distorted the data base for epidemiological & other research, thus denying recognition of the unique epidemiological pattern of Myalgic Encephalomyelitis.’

~ Dr. A. Melvin Ramsay ~

 

 

Image by JS based on the ICC

Problems 

• Overly inclusive criteria have created misperceptions, fostered cynicism and have had a major negative impact on how ME is viewed by the medical community, patients, their families, as well as the general public. 

• Most medical schools do not include ME in their curriculum with the result that very significant scientific advances and appropriate diagnostic and treatment protocols have not reached many busy medical practitioners. 

• Most doctors are unaware of the complexity and serious nature of ME. 

• Patients may go undiagnosed and untreated

• Patients may be shunned, gaslighted and isolated. 

 One possible solution  

Adopt and use the ICC and ICP for Myalgic Encephalomyelitis (ME)

The International Consensus Primer (ICP) was written in 2012 following publication of the International Consensus Criteria (ICC) in 2011 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. 

Medical school faculties are encouraged to include this primer in their curriculum. 

The International Consensus Primer represents the collective wisdom and experience of the members of the primer panel. They share their insights into this complex disease gleaned through research and hundreds of thousands of hours of clinical investigations. 

About the ICC

Many worldwide experts on ME, including Ireland’s Prof Austin Darragh and names we know like Dr. Nigel Speight, came together, and produced the comprehensive diagnostic criteria called the International Consensus Criteria (2011), the ME-ICC.

The ME-ICC advocates for removing fatigue as a characteristic symptom and defines the illness as an acquired neurological disease with complex global dysfunctions.

The ME-ICC also defines specific symptom requirements: post-exertional neuroimmune exhaustion (PENE), neurological impairments, immune, gastrointestinal, and genitourinary impairments, and energy metabolism impairments.

Suggestion re the label/name

'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 ICC because a distinctive disease entity should have one name. 

Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. 

Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.'

~ pg ii, 1. ICP 2012

Suggestion re the criteria and how to solve the 'soup' that we recognise which has led to so many problems, i.e., the soup that includes fatiguing conditions, depression, Fibromyalgia and CFS

'Remove patients who satisfy the ICC from the broader category of CFS. The purpose of diagnosis is to provide clarity. The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions. Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric. 

The panel is not dismissing the broad components of fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.' 

~ Pg ii, 2. ICP 2012

Image by JS based on the ICC

The International Consensus Criteria (2011) along with the Primer (2012) can be adopted and used to diagnose & manage Myalgic Encephalomyelitis (ME), and also used to educate and inform medics and others about this illness. Medics such as GPs and specialists can follow the International Consensus Primer (ICP) to definitively diagnose ME and pursue symptom treatments to help improve quality of life.

Both criteria and primer were specifically written about and for ME, designed to assess the unique combination of symptoms found in ME.

Links to those documents below: -

International Consensus Criteria

International Consensus Primer

 

Image by JS based on the ICC

The ICC alone is not enough to confirm an ME diagnosis, the next step is to absolutely affirm the ME diagnosis. The International Consensus Primer guides doctors to diagnose, treat and rule out other diseases. It is a booklet prepared by ME experts to guide doctors in treating those who fit the ICC.

The IC Primer is a physician guide that includes immune dysfunction, neurological issues, and cardiac abnormalities that are often overlooked in other information.

 

Image by JS based on the ICC

 

Interpretation of the International Consensus Criteria (ICC)

We were very sorry and sad to hear of the passing this year of Lily Silver who left a great legacy, a treasure trove of information and advice for people with ME via her page 'The Sleepy Girl Guide To Social Security Disability' and the 'How To Get On'' website for people in the US, also useful for people elsewhere.

Lily's interpretation of the International Consensus Criteria (ICC 2011) which we have shared a few times before is particularly good and some people may find it useful, the page includes a simple explanation about ME, PENE and goes through the lnternational Consensus Criteria for Assessment and Diagnosis.

 

Image by JS based on the ICC

Symptom Questionnaires

De Paul Questionnaires

We recognise that the ME-ICC does not provide guidelines on the severity or frequency of symptoms that must be present for a diagnosis (as per Leonard Jason et al., 2013); and that it does not suggest the use of a standardised questionnaire for clinical diagnosis, but we acknowledge that the ICC recommends that all patients in research studies complete the International Symptom Scale to increase the reliability of data collection.

In light of the lack of standardised questionnaire for a clinical diagnosis within the ICC, we suggest that alongside the use of the ICC and ICP that clinicians and patients use the De Paul Symptom and Severity Questionnaire (DSQ-2) as well as the De Paul PEM Questionnaires (the short DSQ-PEM and the longer DPEMQ) to evidence symptoms and severity, and to track changes.

There are also specific paediatric questionnaires available which include both parent and child forms, i.e. the DSQ-PED Parent and Child Forms. See all questionnaires below via link.

De Paul Questionnaires

 

 

     ME Advocacy .Org's Do I Fit the ICC Criteria Questionnaire (for over 18s)

     Do I Fit the ICC? is an easy-to-use questionnaire based on the ICC written by meadvocacy.org . It is helpful because the ICC can be difficult to absorb and uses a lot of scientific and medical language.

Do I Fit the ICC?

     Web Form Questionnaire

     The Swiss Society for ME & CFS's web form questionnaire is based on the ICC to help you communicate with your doctor, i.e., help them understand the reality of Myalgic Encephalomyelitis. This questionnaire enables a patient to determine whether the diagnosis of ME according to the ICC may be applicable to them.  Upon completion of the form online there is an option to print it out so that a person with ME can give it to their doctor. Please access that online form here.

 

Image by JS based on the ICC

 

Thanks to JS, an advocate and person with ME, for her images based on the ICC designed for easy to make and carry info cards which can be printed, cut, laminated, and used to inform & educate others including & especially the medics you encounter.

There are two sets, one large and other smaller set for pocket/wallet size. See the large set in images.

A convenient way of passing on ME International Consensus Criteria information.

Here’s how to make if you are up to it or someone else can do for you:

• Print off the images

• Cut and laminate.

All Information in the images is taken from the International Consensus Criteria (ICC). If you would like sets of sharp original images by JS please email info@meadvocatesireland.com

 

 

Image by JS based on the ICC

 

 

ME Advocates Ireland’s position with regards to the International Consensus Criteria (ICC) and Primer (ICP)

We at ME Advocates Ireland (MEAI) advocate and lobby for the adoption and use of the International Consensus Criteria and Primer by the government health agency in Ireland, i.e., the HSE, including community services, medics and other healthcare workers, because these international documents are currently the best standard guidelines available and were written specifically about ME. Despite being a decade plus old the ICC and ICP remain relevant and exemplary. They are extremely useful especially given that the HSE has never developed nor currently has ME Clinical Guidelines.

We believe that the lack of consensus on using one set of agreed upon criteria worldwide is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research funds. It is the biggest roadblock to progress taking place with regards to many aspects of ME including the discovery of a single universal diagnostic tool and education on management and treatments. The lack of consensus has prevented ME making it onto medical school curricula resulting in delayed education among ME-aware medics not only in Ireland but internationally.

Our ongoing campaign promotes the adoption of these internationally accepted set of diagnostic criteria, i.e., the ICC and ICP, which are sufficiently rigorous to ensure correct diagnosis and management.

The use of broad inclusion criteria has created a heterogeneous patient population within research. This has increased the risk of erroneous conclusions, misdiagnosis, and incorrect treatment.

Further Reading

More on MEAI's important post re the problems of various criteria being used to diagnose ME in Ireland and Worldwide. The facebook post linked here includes summaries of the different criterias that have led to issues around Myalgic Encephalomyelitis.

 

Images by JS based on the ICC

We remember Lily Silver, ME Patient & Advocate