by Sasha Nimmo
Why is it important to use ME and CFS? It’s time, Australia needs to leave behind ME/CFS and CFS/ME and adopt the International Consensus Criteria for ME.
‘ME and CFS’ captures an audience who have been diagnosed with chronic fatigue syndrome, as some patients who have been diagnosed with CFS in Australia meet the criteria for ME (just under 32%).
There are a number of different criteria, therefore different names, currently in use.
How Australia names this illness now is important. We have an opportunity in Australia to move straight from ‘Chronic Fatigue Syndrome’ to ‘Myalgic Encephalomyelitis’, as specified in the International Consensus Criteria (2012 ICC) which we should take advantage of, and not muddy the waters by using ME/CFS, CFS/ME, CFIDS or SEID. This will help us be taken more seriously and, importantly, better criteria will be used to diagnose patients and classify them for research, so the quality of research will be better and hopefully bring us to treatments and a cure more quickly (Griffith Uni, for example, used the ICC in studies leading the patenting of a biomarker blood test).
The name change is also an opportunity to leave dubious treatments associated with CFS, like graded exercise therapy and cognitive behavioural therapy, behind.
Norway, for example
Looking overseas, the country to emulate is Norway. Norway use the terminology ME and take ME seriously. Their Prime Minister and their Department of Health have both apologised to patients for the prejudice, lack of respect and not making research a priority. Norway is closest to a treatment for ME, with the discovery and trials of the immune drug rituximab.
Australia’s history and our opportunity now
Australia has traditionally used ‘chronic fatigue syndrome’. Clinician and researcher Prof Andrew Lloyd (who received $1.06 from the NHRMC and reviews applications as part of the NHMRC grant application process, as well as being a proponent of CBT & GET) told me that the 2002 Australian criteria was what he and most others used and he believed it should be kept.
Australian patients and organisations should commend the 2012 ME-ICC to the NHMRC and to all the medical organisations and create a fresh starting point. ME/CFS is not widely used by the medical profession in Australia.
2012 International Consensus Criteria for Myalgic Encephalomyelitis.
The majority of Australian states and territories’ organisations endorse the International Consensus Criteria. Griffith University were some of the authors, along with most of the world’s best researchers. This document might become obsolete as blood markers are recognised and accepted, but for now it is the best we have. Read: Myalgic Encephalomyelitis International Consensus Primer 2012. The 2012 ICC is very clear on the topic of names:
“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. (bold emphasis mine)
Research on ME: The logical way to advance science is to select a relatively homogeneous patient set that can be studied to identify biopathological mechanisms, biomarkers and disease process specific to that patient set, as well as comparing it to other patient sets. It is counterproductive to use inconsistent and overly inclusive criteria to glean insight into the pathophysiology of ME if up to 90% of the research patient sets may not meet its criteria (Jason 2009). Research on other fatiguing illnesses, such as cancer and multiple sclerosis (MS), is done on patients who have those diseases. There is a current, urgent need for ME research using patients who actually have ME. (bold emphasis mine)
Focus on treatment efficacy: With enhanced understanding of biopathological mechanisms, biomarkers and other components of pathophysiology specific to ME, more focus and research emphasis can target expanding and augmenting treatment efficacy.
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. Some 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. Some doctors may be unaware of the complexity and serious nature of ME. Patients may go undiagnosed and untreated; they may be shunned or isolated.
International Consensus Primer (ICP)
Research confirmation: When research is applied to patients satisfying the ICC, previous findings based on broader criteria will be confirmed or refuted. Validation of ME being a differential diagnosis, as is multiple sclerosis (MS), or a subgroup of chronic fatigue syndrome, will then be verified.
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.
The rationale for the development of the ICC was to utilize current research knowledge to identify objective, measurable and reproducible abnormalities that directly reflect the interactive, regulatory components of the underlying pathophysiology of ME. Specifically, the ICC select patients who exhibit explicit multi-systemic neuropathology, and have a pathological low threshold of physical and mental fatigability in response to exertion. Cardiopulmonary exercise test- retest studies have confirmed many post-exertional abnormalities. Criterial symptoms are compulsory and identify patients who have greater physical, cognitive and functional impairments. The ICC advance the successful strategy of the Canadian Consensus Criteria (CCC) of grouping coordinated patterns of symptom clusters that identify areas of pathology. The criteria are designed for both clinical and research settings.
The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.”
World Health Organisation
The World Health Organisation lists ME and post viral fatigue syndrome under neurological conditions.
Importantly, it doesn’t include chronic fatigue syndrome there, or ME/CFS or CFS/ME. Fatigue syndromes are listed in ‘Other neurotic disorders’.
US variety of names
The US were the ones who started using chronic fatigue syndrome (CFS), then they used chronic immune dysfunction syndrome (CFIDS) and now their Institute of Medicine has recommended ‘systemic extertion intolerance disease’ (SEID) so let’s not follow them into their mess of names.
A number of scientists have studied the different criteria recently:
‘Norwegian researchers ask “What exactly is M.E.?” 2015 which also includes an excellent summary of the main criteria (Oxford, Fukuda, Canadian, International Consensus and SEID). They say “it is important to distinguish between myalgic encephalomyelitis and chronic fatigue syndrome” to improve understanding of the disease, treatment and patients’ lives as using incorrect criteria can lead to ‘incorrect treatment’.
‘Study says scientists must agree on classifying patients’ on a 2016 paper by Dr Jason and others. Dr Jason is well-respected in the field, has been for a long time and he uses ‘ME and CFS’. Dr Jason is involved in the IACFS/ME (along with Griffith’s Prof Sonya Marshall-Gradisnik, who wrote the criteria that New Zealand use). I follow Dr Jason’s (and others) in using ‘ME and CFS’ rather than the two together as he has done for a number or years.
Twisk’s paper explains that ME and CFS are similar, overlapping but not the same: “distinct, partially overlapping, clinical entities such as ME and CFS” and this diagram came from his 2016 paper:
There are some organisations who have always stuck by the name M.E. (and who history is proving to be right as more is known about the illness) and who explain the differences (rather than focus on the similarities).
A well-known Canadian doctor, Dr Byron Hyde, and the Hummingbird Foundation have this comparison chart.
Another chart which explains it in images ‘at a glance’ is here, (and a couple of other image formats here).