Positive and Negative Aspects of the Proposed Name “SEID”

V2 Aspects

 

Positive Aspects

Some respondents to the main survey (N = 269) were asked to look at a list of positive statements about the proposed name (systemic exertion intolerance disease or SEID) and to state whether they believed each was true. They also could state that there were other positive aspects of the proposed name or that there was nothing good about the proposed name.

Following is the percentage stating that each statement was true of the proposed name:

 

55% – It is better than chronic fatigue syndrome (CFS)

35% – It conveys the idea that any kind of exertion (physical, cognitive, emotional) can be harmful.

35% – It conveys the idea that exertion can negatively affect many aspects of these patients’ lives.

27% – There’s nothing good about the proposed name.

22% – It conveys the idea that exertion can harm many organ systems in these patients.

21% – It is better than myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

17% – It accurately describes the core symptom of the disease.

13% – The fact that it was chosen by professionals makes it credible.

11% – It conveys the severity of the disease.

11% – It will result in doctors and researchers understanding what the disease is like.

  9% – It will not have a stigma associated with it.

  6% – It conveys the full scope and complexity of the disease.

  4% – It will be easy and inexpensive to put into use.

  7% – It has other positive attributes – specify below.

  4% – I’m not sure

 

V1 Aspects 1

 

Negative Aspects

Some respondents to the main survey (N = 714) were asked to look at a list of negative statements about the proposed name (systemic exertion intolerance disease or SEID) and to state whether they believed each was true. They also could state that there were other negative aspects of the proposed name or that there was nothing wrong with the proposed name.

Following is the percentage stating that each statement was true of the proposed name:

 

70% – It sounds like there’s just one symptom.

66% – It sounds like fatigue, laziness or deconditioning

54% – It will make it less likely that other abnormalities (such as those of the brain) will be studied.

54% – It does not serve the needs of severe patients.

54% – The disease already has a name – Myalgic Encephalomyelitis (ME).

44% – It sounds bogus instead of scientific.

43% – It’s misleading in general

42% – It sounds like it could be a psychological illness.

34% – Another name would be better.

26% – I don’t like the acronym SEID

21% – It is too hard to remember

14% – I have other concerns – specify below.

  5% – There’s nothing wrong with the proposed name.

  1% – I’m not sure.

 

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