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

February 11, 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:

14 thoughts on “Name change committee report | Comments by Dr Charles Shepherd, medical adviser, ME Association | 11 February 2015”

  1. I disagree that CFS in itself is such a bad name as the expert suggests, as it does define with some adequacy the fundamental or core symptomatic element in the condition. I think this would be agreed by nearly all sufferers, and the qualifier “chronic” is there, plainly. Although it leaves out a lot of the symptoms which are sicknesses in themselves. But then, what title could be representative of these? CFS is not so bad.

    I remember thinking a long time ago, from a distance and before I was a sufferer myself, that Myalgic-Encephalopathy might be an accurate name, and one which patients and doctors could accept. However, the element myalgic may be misleading in itself, because many sufferers may not even get to the muscular pain or malaise part because they’re too fatigued of the consciousness or systemically fatigued. My feeling is that the myaglic element can seem to ignore that so many sufferers suffer greatly on the cognitive side as well as physical side with fatigue. There can be very low consciousness and concentration ability much below even being able to think or be aware about certain tasks mentally in a way which could prepare them to do them, if they were indeed physically able to. It seems to me this is a fatigue malaise kind of before the stage of muscle malaise, but where muscle malaise can also be or become as pronounced – with or without the cognitive impairment. (And it is here, particularly, where it seems the “exertion intolerance” label is, more than just misleading, simply out of the true picture.)

    I think part of the reasoning behind adopting the CFS title (aside from dropping what became thought to be an inaccuracy of understanding the symptomatic condition) was to make things clearer for sufferers and those who did not know the condition. While, as many are aware, this has kind of backfired very often. At the same time, the proposed label in America could have the same or worse effects. The “systemic” label, however, is something I do like, which I do think is appropriate.

    I believe sufferers are very concerned to have the neurological basing of the condition in current medical understanding (basing or basis, I suppose) made plain. I would agree with this, for encephalopathy tends to suggest, at least for non-professionals, the brain alone. While many sufferers believe the whole system, and particularly nervous or immune systems, have at least a major role. (I think some even believe this could be how the condition begins and brain involvement is a secondary event or stage). I’ve seen the desire to have recognition by label as a neuro-immune condition and those who wish stressed the immune, neuro, and autonomic relevance.

    I see, for a professional medic, it can be very difficult to title, label and define an illness when you don’t actually, medically, know what it is you are defining. In that sense, for the moment, perhaps CFS may be a rather relevant description of what remains, for the time being, a symptomatic condition and what may be very often associated with other illnesses or diseases (crucially for assessing any relevance of psychological or psychiatric connections to the illness). I’d still support the title CFS as long as it is thought essential that people become familiar with the many other symptoms it very often entails, beyond common, inexperienced connections with normal fatigue alone, even where extreme. Basic communication about the condition should always include this.

    While I believe I do agree that it would help sufferers that their terrible condition can be officially referred to as a “disease”, I just don’t want to have to put up with DIES backwards! Re: Exertion intolerance – unfortunately, if I don’t exert myself, I don’t get any better and I am still very sick indeed.

    (From just a sufferer.)

  2. Thank you Dr Shepherd for your clear view of the report.

    You have, for me and ME put your finger on the main problem. This name, SEID and the recommendations, are not strong or effective enough to change attitudes, amongst doctors as the NICE guidelines seem unlikely to be positively reviewed in these circumstances.

    Unless ME experts and patients reject SEID and provide a suitable alternative, backed up with patient evidence, we are in for many more years of psychiatric nonsense governing our lives.

  3. I do sympathise with you lcb10 in your acute fatigue, but if you had cancer, you would not want doctors to concentrate on researching your fatigue, I suspect. Cancer and many other ‘chronic diseases’ have ‘chronic fatigue’ as a result.

    We need to get to the route cause of your fatigue and the only way to do that is to have biomedical research funded. While fatigue remains the priority, psychiatrists are still arguing that it is ‘fear of exercise’. I suspect you would not accept that either. This is unacceptable for us all.

    It is a good recognition of SEID backwards, which I hadn’t picked up on. It may even be a very good reason why we should certainly not accept this awful name. Well done.

    I hope we all find a way forward through this terrible disease.
    Best wishes

  4. Thank you for your summing up – I’ve been waiting for it. I’m too ill to read the whole thing myself though I did manage a little of the first part and one of the things I noticed was that part of the brief was to decide if it needed a new name. How did that turn into giving it a new name? Maybe it is explained in the main body of the report. Or perhaps they just got carried away with trying to make a difference . . . they do seem to have got the severity of the illness.

  5. Oh. That could read like I’ve been waiting drumming my fingers ‘cos you took so long. Didn’t mean that at all. You did it super quick – particularly as you are so busy with everything else on our behalf.

      1. One of the most important things about this new name for me is if it will lead to MORE
        biomedical research?
        It has been said that there maybe around 15 different sub-groups that are under the
        umbrella/dustbin diagnoses of M.E./C.F.S.

        So I am looking at this new name as being TEMPORARY?

  6. I was thinking that if the patient community can loudly raise their objections to the new name, could they be persuaded to go back to the drawing board and look at this again, after all, they should have consulted internationally about this as whatever we say, what happens in US effects us all eventually. I cannot imagine why anyone would think that keeping the word CFS is a good idea…non plussed about that ?? Apart from many other things SEID sounds like SAD and also spells DIES backward, are they trying to humiliate us all over again. I’m not entirely against it if it is more acceptable to doctors, but I think there could have been a much better choice, perhaps the suggestion of, chronic postural neuroimmune dysfunction disease., could be shortened to , say, CPD, don’t think that sounds like any other illness does it? I think it is a much better description, and more accurate. I think the word , neuroimmune, describes the type of illness better than anything.

  7. Well I am not for this new name, sounds rubbish. I really don’t care about labels, isn’t it aboout time more focus was given to finding out more about this debilitating illness. From my own experience it seems to me ALL my bodily systems are affected, whether that is right or wrong, but it damn well feels like it.

    The fatigue is debilitating, if I was asked about an appropriate name I couldn’t suggest one, but what I will say is that using the word fatigue doesn’t really do it justice, so CFS I am not keen on, plus it doesn’t represent ALL the other symptoms I experience or the severity of the fatigue.

    I have been fatigued through pushing myself in work, sport and through various viruses over the years, but this fatigue is absolutely on a different level, it feels different than the fatigue you get from pushing yourself, or having a virus.

    What needs to be understood, with ‘exertion’ is that exertion to some suffers is brushing their teeth, or talking for ten minutes and feeling like they have ran a marathon.

    So when we talk about fatigue, post malaise etc and use the name CFS it doesn’t really make it clear what ‘exertion’ means to someone with M.E/CFS and neither does it come close as to ‘why’ it is so difficult to ‘exert’ yourself.

    These stupid stories about being afraid of exercise makes matters worse, so has this ‘all in the mind’ attitude and the psychiatrist are to blame for that. If they lived my life for one day they would be ashamed of what they have done and may just start to beging to understand how debilitating this illness is and would surely want proper research into this illness.

    My natural tendency is to exercise, I love exercise, I love work, I have been very active ALL my life. I am not fearful of exercising, in fact I am the opposite, I have needed to accept I can’t exercise, and I am of same mind. I do not use the name CFS I use M.E mainly because CFS doesn’t represent what this illness has done to me. If M.E is not accurate because of the E in M.E so what, most lay people don’t even know what M.E stands for any way. Why are doctors bothered about a name, when they don’t even understand the illness.

    FIND the cause, the patholgy, understand the disease process and then rename it if you must. Multi system Malfunction Debilitating Disease, MMDD there you go.

  8. I believe the new name whilst far from perfect, essentialy captures what a critical symptom PEM/PENE is and that Exertion=harm adversely affecting all the body ie Systematic, having gone from mild/moderate to moderate/severe and permanent i can understand the reasoning of the IOM panel.
    They recieved about a 1000 comments beforehand, many of whom (including myself) spoke of the dangers of early dismissal by GP’s who essentially are harming patients through bad advice.
    They rely of the scientific evidence of the 2 day CPET which cannot be faulted.
    Many patients/professionals will now clinically know of the danger signs.
    The name will change again, if there are larger Neurological trials and the Rituximab trials bring further results.
    However as someone moderate/severe the nature of neuro-inflammation from virtualy zero at rest to a feeling of low grade poisoning with the flu in crowded situations shows the difficulty of Neurological examination.
    Many have mis-read the report which overwhelmingly dissmisses Somatization and is no comfort to the biopsychsocial theorists, whose time is up.
    A step forward.

  9. Whats in a name ?

    Morning doctor i have come to see you about my CFS/ ME. Sit down and have some Amitriptyline
    Morning doctor i have come to see you about my S.E.I.D. Sit down and have some Amitriptyline

  10. I think Dr. Shepherd demonstrates how difficult it is to produce a name at this point.
    With regards to chronic postural neuroimmune dysfunction disease, not everybody has significant postural problems and neuroimmune could apply to many different disorders.

    So you have a vague term tied to a problem not everybody has.

    I, for instance, have some postural problems but just to the extent that I think and feel better if I sit down. Exercise intolerance, on the other hand, is pretty much immediate and very significant. It describes the most noticeable symptom for me.

    Is an encephalopathy necessarily the cause of ME/CFS? What if the cause ends up being in the blood vessels found both inside and outside the brain? Or perhaps it’s an infection of nerve tissues outside the brain? The Lights work suggests the problem may start outside of the brain.

    I experience muscle pain – it’s a major symptom for me but other people simply experience weakness.

    I don’t think there is a name for ME/CFS that we’re going to like right now 🙂

  11. I don’t mind IOM’s choice of name and I do believe it will change once science better understands the underlying disease process. When CFS was coined it was detested by patients and rightly so as it trivialised and simplified what is a complex illness. It has also been very damaging and has diverted a lot research and funding away from biomedical research towards psychological interventions/treatments namely GET and CBT. Conversely the name ME has generally not been accepted by many doctors and GPs and it maybe a lost cause trying to persuade them to do so. It is in light of this and the very long entangled history for the heart in understanding this illness that a new name should emerge. If the new proposed name SEID succeeds where both ME and then CFS has failed to advance our knowledge of this very serious disease then I’ll whole heartedly accept it. If money starts to pour into biomedical reasearch and suffers are no longer dismissed as not having a serious disease then I’ll embrace and adopt it, in fact I would love it. Let’s wait and see if these objectives are met. I don’t believe it’ll change over night. We’ve been patiently waiting for decades for the answers but maybe we have finally turned a corner. Forever living in hope.

  12. I have an additional problem with SEID. In my mother tongue, Afrikaans, SEID doesn’t work at all! The translation sounds horrendous…like a fancy term for laziness.

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