Why our latest website poll is asking about a new name for the illness | 1 March 2015

March 1, 2015

The U.S. Institute of Medicine (IoM) published a report in February which made a number of recommendations regarding the name, clinical definition and diagnosis of ME/CFS.

With regard to the name, the report recommended that CFS and ME should be replaced by a completely new name – systemic exertion intolerance disease (SEID).

The IoM did so because they concluded that CFS is no longer suitable and that ME (as myalgic encephalomyelitis) is not an accurate term. This is because some people with ME do not have myalgia (= muscle pain) and what neurologists understand as encephalomyelitis (= a widespread and significant inflammation involving both the brain and spinal cord) has not been proven.

The IoM therefore recommended a new name for both CFS and ME – one that includes the widespread nature of symptoms (= systemic), the presence of post-exertional symptomatology (= exertion intolerance), and the acknowledgement that is is a real illness with a pathological basis to it (hence disease).

So far, public opinion on the new name on internet discussion forums, including MEA Facebook, has been very mixed. Many people have expressed negative or very negative opinions. Others have given a cautious welcome the new name.

The MEA position is that achieving a consensus on a new name should have involved a much wider group of international health professionals and that the patient community should have been asked for their views before any firm recommendation was made. We have also stated that we believe that further consideration should be given to the name myalgic encephalopathy – which retains the letters ME and cannot be challenged on the grounds of pathological inaccuracy.

However, the report has been published, a firm recommendation on a new name has been made, and it seems likely that the new name will be used – certainly in North America.

So the purpose of this month's MEA website survey is to find out what people with ME/CFS in the UK think about the new name. This will be important if moves are made by health professionals here in the UK to replace both CFS and ME with SEID.

So please give this question some thought and let us have your views.

If you want to comment as well, please do so via ME Connect, or through the discussions on the new name that are taking place on our Facebook.

10 thoughts on “Why our latest website poll is asking about a new name for the illness | 1 March 2015”

  1. I thought I’d point out that those of the CBT/GET school of thought (the psychiatrists, psychologists, etc who promote these therapies) would much prefer for chronic fatigue syndrome to continue rather than systemic exertion intolerance disease. They like for “chronic fatigue syndrome” and “chronic fatigue” to be mixed together in people’s minds.

    They don’t want it called a disease.

    “Chronic Fatigue Syndrome” has led to vague criteria that don’t require post-exertional malaise like the Oxford criteria, Empiric criteria (Reeves et al., 2005) and the Fukuda criteria. These have led to all sorts of problematic research.

    People have been looking for illness definitions to require post-exertional malaise. Systemic Exertion Intolerance Disease ensures this. Chronic Fatigue Syndrome definitely does not.

    We don’t get many opportunities to change the name. If we don’t take the opportunity to move away from Chronic Fatigue Syndrome now, who knows when the next opportunity may arise.

  2. I can understand why so many patients want to keep myalgic encephalomyelitis (not encephalopathy – most patients have no time for that version at all and the MEA is isolated in continuing to push it).

    Promising evidence for the name, ME, exists already, and will continue to be added to.

    But, in the meantime, the debate around the name is holding us up. Every time it is revisited, more people add their two pen’oth, and we have to start all over again with the explanations and the justifying for ME. Because of that, we are not moving other important things forward (as the HHS and IoM have just proved yet again). We’re going around in circles. There is no magic wand that is going to persuade the people who are against ME as a name to suddenly change their minds and fall into line.

    If we want to get off the hamster wheel on this issue, we have to accept that, at the present time the name ME is holding us back almost as much as the name CFS did. I believe we need a new name that everyone, not just patients but Government departments, health authorities and the media can get behind.

    Let’s sidestep the debate over a name that uses (disputed sets of) symptoms, and instead focus on something far more important: the clinical case definition. It would get us a long way forward to work out a name that is linked to the clinical case definition most patients want HHS, IoM and everyone else to use as a starting point.

    And, here we have some choices. We can go back to the 1940s and choose Ramsay or Royal Free. Or, we can kick the debate into the new millennium and go with something around the CCC or ICC (perhaps the place they were hammered out).

    But, I think we have to accept as a patient community, that all the explanations, vociferous arguments and stamping of feet is not going to get the establishments in the UK or in the States to use ME. Time to move on.

  3. I am confused as to why so many folk are voting to replace CFS with SEID rather than ME.
    ME is the one with PEM, CFS is not.
    SEID has PEM.

  4. Why can’t we name the disease after someone. Like Huntington’s, Parkinson’s, Tourette’s or Lou Gehrig’s. People take those illnesses seriously.

  5. CFS is vague but so is the understanding of the aetiology of the disease; that being the case, is it not better to wait for the disease to be properly classified? SEID is even more absurd than ME. It would be like calling viral encephalitis, headache disease.

  6. SEID – A big step in the right direction.

    Exertion Intolerance is the symptom which separates us from other CFS illnesses.

    Recognising it explains why GET is harmful to us if it goes beyond our individual ceiling.

    I would like a stronger word than tolerance.

    Systemic conveys the ‘all system’ nature of the disease.

    Disease is better than Syndrome.

  7. I feel no allegiance to the name ME. It has brought nothing but grief.

    I would welcome a new name, especially one that recognised how badly a

    lot of us suffer from deep, crippling exhaustion following the slightest exertion.

    I am in the middle of a complaint about a carer who stood over my bed and

    woke me ranting that she knew all about ME and the agency would do me

    no favours allowing me to be lazy. There are many much worse stories

  8. I will leave the medical diagnosis and fancy words to those that know what they mean, but any medical body wishing to name or re-name what I refer to as ME must listen to those that are suffering from it. I think it is a huge mistake to include anything that suggests malaise or fatigue as the sceptics will just use this against those suffering real hardship with this terrible illness.

    It is also a changing beast as I have learned. Nearly nine years in now and I’ve gone from working full time with an active sporting and social life, to part time, to now being unable to function in a normal office environment. Noise is now a big factor with me, as well as pain which wasn’t so prevalent before. I have also gone from being someone who ran marathons for charity, to someone who can’t walk for toffee. My balance is hugely affected, with dead / numb legs causing real issues and a need for a stick when I leave the house. I therefore feel there is a need for the pain to be included in the name, as well as the affects on the mental function. I think we all recognise the ‘brain fog’ but we use that as an easy description, quite simply as it can be difficult to find better words as we might have done previously. That aspect is major as is the complete exhaustion that hits us, but I repeat must not be regarded as mere fatigue or malaise. When it hits, it’s like nothing else, totally beaten up, feeling battered and bruised with the weight of a couple of rugby players on your shoulders. Find a medical term for that if you can !

  9. I definitely back the ME name being kept for the reasons Dr Shepherd has stated. It is known and recognised and ‘says what it does on the tin’!! The CFS name should be stamped out in the ME world.


    The word Exertion is more powerful than exercise and ‘intolerance’ can be seen to be overcome by slowly introducing ‘the product’ (exercise) into sufferers’ lives!! e.g.nut allergies. Although that IS classed as an ALLERGYy, some may say they are intolerant to nuts or other foods etc. Too vague and open to interpretation. e.g. avoid what you fear of happening! Isn’t this another way of interpreting ‘fear of exercise’ when the psychiatrists state they have supposedly shown GET and CBT works? With vague and non independent investigations into the PACE trial?

    Are they going to say people need more exertion or tougher exercise now, because new ways of exercise for ME/CFS patients is what they are suggesting be trialled next.

    I think in SEID we have a ‘play on words’ which can be interpreted however the psychiatrists wish and we’ve seen their response in the previous postings, that are on this website, with links to their comments.

    Please put a robust argument for ME to be called ME. We have a serious Neurological Disease. We know it and so do the ME Experts.

    Thank you for the opportunity to back the name change for ME being called ME.

  10. If anyone does not understand why we need to have the CORRECT name for this disease then please read and re read the article above and why it states it is so important.

    The IOM are it seems going ahead with SEID

    It is going to greatly influence our future lives with ME and how we are treated. How and how long it takes to diagnose it and more years without any funding for the research we so desperately need into biological evidence.

    This I’m sure you will agree is a vital time in our lives when we can all say we are physically ill from a real neurological disease!

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