Is the proposed name SEID useful?

A committe of the Institute of Medicine (IOM) in the USA proposed the new name systemic exertion intolerance disease (SEID) for chronic fatigue syndrome (CFS) in the report Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness released the 10th of February 2015.

I think the IOM committee went too enthusiastic about a new name, and forgot all the problems the introduction of a new name will generate.

If the WHO website ICD-10 tool is searched for the G93.3 code the following result appears:

Akureyri's disease, Iceland disease, Benign myalgic encephalomyelitis,  Neuromyasthenia, Chronic fatigue syndrome, Postviral fatigue syndrome

For example the following names turn up for G93.3:

  • Akureyri’s disease
  • Iceland disease
  • Benign myalgic encephalomyelitis
  • Neuromyasthenia
  • Chronic fatigue syndrome
  • Postviral fatigue syndrome

In this panoply of different names, I think there should be a name for every taste. I do not think we need any more names. For example, if a person can not bear with Myalgic Encephalomyelitis for some reason, then he can use any of the other names instead.

I perform searches on PubMed with the following in the search field: (“chronic fatigue syndrome”[Title] OR “myalgic encephalomyelitis”[Title]) AND searchterm(s). Adding a third name for the condition, would make the search exuberantly complicated. Remember that most people will only search on one name, and that way important results will not turn up in their search.

There is of a halflife of 45 years of medical “truths” that are false according to Poynard 2002 (Poynard T, Munteanu M, Ratziu V, et al. Truth survival in clinical research: an evidence-based requiem? Ann Intern Med. 2002;136:888-95). This means that the clinical medical care system is extremely sluggish (viscous) and one has to expect that it may take half a century before a new term has spread (diffused) accross it.

Who would think of changing malaria into something else because it is not caused by bad air as the name proposes? I think the most important thing for a name of a medical entity or a scientific term is that it is unique, so it is not confused with other things. It is also important that the term is constant over time and space, allowing scientists and physicians finding the relevant information.

I think it is important to stick to Myalgic Encephalomyelitis (ME) in order too keep the link with earlier documents, research, etc of the topic. If names are changed back and forth, then people will not find relevant data if they do not know older versions of the name, or if they forget to search on all versions of the name at the same time.

Chronic fatigue syndrome has been criticised for ridiculing the condition, but systemic exertion intolerance disease would probably ridicule it even more. In Swedish language systemic exertion intolerance disease would be something like “systemisk ansträngningsintoleranssjukdom” which many will probably believe is a psychiatric condition. Some people will believe it is a condition where a person is lazy and therefore “allergic to work”. Slacker (latmask in Swedish) is one of the worst epithet one can get in the Swedish culture where a strong will to work is celebrated. Very probably many people will laugh out loud when hear systemic exertion intolerance disease for the first time and will think you are telling a joke. Also, systemic exertion intolerance disease does not at all reflext that it is a condition with many disabling and torturesome symptoms. Instead, it sounds like a comfortable disease where one has a comfortable life without having to exert oneself, because one just does not tolerate it.

I think one should name diseases after the patophysiology rather than symptoms. If I had chosen a new name then it would be along “neuroimmune vascular mitochondrial disease”.

I am open to that in the future new scientific discoveries of the patophysiology and aetiology will lead subgroups. When knowledge have advanced so far, then it will probably be straight forward to name the subgroups based upon the identified aetiology. Until then I think it is too early to think about changing the name.

The U.S. government is encouraged to start to fund biomedical research into myalgic encephalomyelitis (ME) at the level of comparable diseases, that is around 500 million USD yearly. ME is originally described in the 1950:s. ME is in the neurological section of the the WHO ICD list since 1969. It has a good definition in the International Consensus Criteria for Myalgic Encephalomyelitis from 2011, or else the Canadian Consensus Criteria from 2003.

2 kommentarer

  1. För mig är namnet ME det lämpligaste därför att den svåraste smärtan är en invalidiserande huvudvärk 24h/dygnet. Encefalo ( skalle) känns bra.
    Det är klart att när mina övriga smärtor ökar blir jag helt led- och nedbruten och ärligt talat skiter jag då i vad det heter bara jag kunde få HJÄLP.
    Elfte året med konstanta smärtor.

  2. SEID can’t go into ICD-10-CM (US version) for at least 18 months. We doubt it’s going to get used. The problem is getting US to adopt ME, which was never really used in the US (we used epidemic neuromyesthenia). But I think we’re making headway.

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