Name change committee report | Comments by Dr Charles Shepherd, medical adviser, ME Association | 11 February 2015

Institute of Medicine Report: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Redefining an illness

Like any report produced by a committee, some of whom may have very differing views, this one has its strengths and weaknesses.

Overall, the strengths far outweigh the weaknesses, in particular the way the report is sending a number of very clear messages to health professionals.

ME/CFS – as currently named and defined:

>> is a serious, chronic, complex, systemic disease (the use of the latter term being very important) that severely impairs a person’s ability to conduct any form of normal life with around 25% being house-bound or bed-bound at some point

>> occurs in children and adolescents as well

>> is a physical disease

>> often remains undiagnosed and untreated but it can and should be diagnosed from the characteristic complex of symptoms (which form their proposed diagnostic criteria) as a distinct clinical entity

>> is often absent from key components of medical education: tuition at medical schools, information in medical textbooks, postgraduate education etc, So many health professionals misunderstand the disease, regard it as a mental health problem, and lack the knowledge on how to diagnose and treat it

>> urgently requires high quality research into the underlying disease processes/cause

>> has no magic answers when it comes to treatment, and although a review and recommendations on management were not part of the remit, CBT and GET are not the solutions

So I would like to thank the IOM committee for all the time and effort that they have put into producing a very detailed report which, certainly in America, should help to improve the recognition, diagnosis and management of people with what is currently called ME or CFS.

I will now comment in a bit more detail on the recommendation that ME and CFS should be replaced by a new definition and a new name: systemic exertion intolerance disease/SEID, which the committee believe will more accurately capture the central characteristic of the illness

Whilst it is encouraging to note that the proposed new definition includes post exertional malaise and orthostatic intolerance (something the MEA has been trying to persuade NICE to accept) I think most doctors here in the UK will continue to take a pragmatic approach when it comes to making a diagnosis and not rigidly adhere to one particular set of diagnostic criteria. So I do not think this recommendation is going to have any real effect on UK medical practice.

Regarding nomenclature:

CFS/chronic fatigue syndrome is an absolutely dreadful name for a serious and debilitating neurological illness. It is the equivalent of saying someone with dementia has a chronic forgetfulness syndrome. CFS needs to be placed in the medical dustbin of obsolete names as soon as possible.

But I’m not feeling very excited about what is being proposed – systemic exertion intolerance disease or acronym SEID – by the IOM.

If the international medical community really wants to put a thick red line through the name ME/myalgic encephalomyelitis (due to the probable pathological inaccuracy of the E in ME) I would suggest that we once again consider the term ME/myalgic encephalopathy – which is consistent with the structural and functional neurological abnormalities that have been reported in the medical literature and cannot be seriously challenged from the position of pathological inaccuracy.

If the medical community won’t accept ME in either format, I would far prefer a name new that emphasises the neurological and immunological components of ME/CFS – perhaps something along the lines of a chronic postural neuroimmune dysfunction disease.

My gut feeling is that the IOM proposal is not going to gain sufficient support from either the international patient community, or the international medical community.

SEID is not therefore the simple solution we need.

A far better way of dealing with the issues of definition and nomenclature would have been for the IOM to say that CFS is dead (which would have been widely welcomed by the ME patient community and many doctors) and that we must now to start a process of consultation which involves the international medical community and patient community on a new name and a new definition.

Because without this type of international consultation and agreement, we are not going to resolve the major problem of what we should call this disease and how we should define it.

Dr Charles Shepherd
Hon Medical Adviser, ME Association


Report Summary:

Expert opinion from American physicians – compiled by Russell Fleming for the MEA:

US media reporting: David Tuller in the New York Times:


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