In February 2015, the Institute of Medicine (IOM) released a long-anticipated report “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness“ which examines the state of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) in the USA.
The panel of experts engaged to produce this report were under scrutiny from day one. With a condition that is more often than not misunderstood and misrepresented, the speculation prior to the release of the report was considerable and not everyone affected by ME/CFS was expecting a positive outcome.
Scepticism is an understandable response given the lack of weight given to the seriousness of this condition by the majority of the medical profession and indeed, the general public.
Reactions to the report have been mixed, as expected. You can read a number of the responses (1) at our website. Some of the responses include:
- Within hours of the release of the report, the New York Times’s David Tuller reported: Chronic Fatigue Syndrome Gets A New Name (2)
- In March, Professor Leonard A Jason outlined his serious concerns around the report: The IOM’s efforts to dislodge Chronic Fatigue Syndrome (3)
- Cort Johnson at Health Rising looks at the issue of the name: The Name, The Name, The Name… What would YOU pick? (4)
- Dr Gary Kaplan discusses what, in his view, the report doesn’t: What’s missing from the IOM report about Chronic Fatigue Syndrome (5)
In general, the consensus appears to be that the report is heading in the right direction, but falls short in follow-through.
The IOM report is issued within the context of the US health system and their approach to the condition. While it has an effect internationally, it is not specifically targeted to the Australian population or the healthcare system. Any comments on the report need to be taken in this context.
One of the very positive and extremely encouraging outcomes of the report is that it confirms the seriousness of the condition. According to Action for ME in the UK (6) “the IOM committee made many strong statements in its report that contribute to the validation of M.E. in a way that we have not seen at this level before.” In addition to this, the news coverage of the report (particularly in The New Yorker – an extremely influential US newspaper) has given the condition an unprecedented profile.
There are four major recommendations in the report (7):
“Physicians should diagnose ME/CFS if diagnostic criteria are met following an appropriate history, physical examination, and medical work-up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10) that is not linked to “chronic fatigue” or “neurasthenia.””
“The Department of Health and Human Services should develop a toolkit appropriate for screening and diagnosing patients with ME/CFS in a wide array of clinical settings in which these patients are encountered, including primary care practices, emergency departments, mental/behavioral health clinics, physical/occupational therapy units, and medical subspecialty services (e.g., rheumatology, infectious diseases, neurology, cardiology).”
“A multidisciplinary group should re-examine the diagnostic criteria set forth in this report when firm evidence supports modification to improve the identification or care of affected individuals. Such a group should consider, in no more than 5 years, whether modification of the criteria is necessary. Funding for this update effort should be provided by non-conflicted sources, such as the Agency for Healthcare Research and Quality, through its Evidence-based Practice Centers process, and foundations.”
“The committee recommends that this disorder be renamed “systemic exertion intolerance disease” (SEID). SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.”
Comments on recommendation one
This recommendation includes a new set of diagnostic criteria (8) about which opinions vary. The inclusion of Post-Exertional Malaise (PEM) is welcome, but the six-month diagnosis time is of concern. Particularly in cases of sudden-onset, this time period is problematic when looking at management strategies for the condition. The report addresses this concern “(E)ven if patients do not meet the criteria for this disorder, clinicians should address their symptoms and concerns. Patients who have not yet been symptomatic for 6 months should be followed over time to see whether they meet the criteria for ME/CFS at a later time.” This six-month period shouldn’t be taken as an excuse to do nothing. Symptoms must be investigated thoroughly and strategies such as pacing and sleep hygiene for example, can be employed whether the diagnosis is confirmed or not if PEM and unrefreshing sleep are present. Other symptoms not mentioned in the IOM diagnostic criteria, but included in the 2012 International Consensus Primer (9) such as (but not limited to) food sensitivities, gastro-intestinal and body temperature issues must also be paid attention to and treated within this period of time regardless of the official diagnosis.
Also of concern is the addition of another set of diagnostic criteria to those already available (10). While a comprehensive set of criteria for GP’s is sorely needed, these need to be a universally accepted set. The difficulty in developing this set of universally accepted criteria set is of course, that there is not enough research into the condition yet to provide the basis for them. And while we are waiting for this research to be conducted, the GP’s faced with severely ill patients find it difficult to provide a diagnosis that they are comfortable with. The intention of the IOM is excellent – to provide criteria for GP’s to work with. As stated earlier, it is up to GP’s to respond to the individual and their particular presentation of symptoms as soon as they are presented. The critical next step is to follow this up with more research into the condition so that we have a universally accepted set of criteria.
The call for a new diagnostic code under the International Classification of Diseases, Clinical Modification (ICD-10-CM) is very welcome. Chronic Fatigue is a symptom of ME, it is not the same as ME or CFS. A new diagnostic code would help to make this important distinction.
Comments on recommendation two
The development of a toolkit appropriate for screening and diagnosing patients with ME/CFS in a wide array of clinical settings in which these patients are encountered is another welcome recommendation. Given that this is a US-based report, any toolkit would need to be reviewed for the Australian health and service systems. However, a solid, well-researched kit would be of great benefit to those affected and professionals in the health/service sectors.
Comments on recommendation three
An independent review of the criteria in this report within five years is a necessity. An on-going review undertaken at least every two years, would be preferable. This would keep the condition in the public eye and take into account any new research findings within that period. Given that it takes 17 years to translate research into practice (11), the quicker we can facilitate the implementation of new evidence-based research into practice, the sooner people affected by ME/CFS can begin to manage their condition with confidence.
Comments on recommendation four
The recommendation of a new name has perhaps had the most attention from the media, and has provoked strong reactions from readers of the report. In fact, in some cases the condition is already being called “systemic exertion intolerance disease” (SEID) by default in some of the US media.
It is extremely important to use a name that accurately reflects any health condition. Without getting too esoteric, words are important. These are the way that the vast majority of us tell our stories and find meaning in the world. If our words are vague or inaccurate, we can be misunderstood or unable to empathise with others. ME/CFS is a very misunderstood condition and part of that misunderstanding is that the current names for the condition do not accurately describe the full scope of the condition. At this stage, introducing another name that also doesn’t accurately describe the full scope of the condition, is not likely to help the understanding of the condition.
The IOM report has created a lot of discussion around ME/CFS and with attention comes enquiry and with enquiry comes new information and hopefully, new evidence. It’s what we do with this new evidence that will ultimately show us the benefit of this report.
The key messages highlighted in the report according to the IOM are that:
- ME/CFS is a serious, chronic, complex, multisystem disease that often can profoundly limit the health and activities of affected patients.
- A thorough history, physical examination, and targeted work-up are necessary to determine a differential diagnosis and often sufficient for diagnosis of ME/CFS.
With spending on ME/CFS research in the USA (12) at just over USD$5 million (231st out of 244 categories), it’s to be hoped that the IOM report encourages more enquiry and a greater commitment to the investigation of the condition.
Emerge Australia (in conjunction with Federation University) is currently undertaking a survey (13) to examine the Health and Welfare of people with ME/CFS. The survey is designed to quantify the level and type of need in the ME/CFS community to help inform clinical and allied health services, improve medical training, de-stigmatise ME/CFS in the community, motivate research and improve financial circumstances of people living with ME/CFS. This in turn, will ensure greater understanding and acceptance of the condition and its impact on the lives of people affected, thereby reducing social isolation.
Emerge Australia will be continuing to monitor the impact of this report. The IOM report puts ME/CFS in the spotlight and calls for consensus among US healthcare professionals around the way it is diagnosed and managed. It also provides an excellent focal point for the condition at this point in time. We will be using the learnings from the report, as well as the information gathered in the Health and Welfare Survey, to continue to inform and educate about the condition in Australia.
CEO, Emerge Australia Inc.
Download version: Emerge Australia comments re IOM report April 2015