“ME/CFS” Survey Name Choices

 

This question was asked of all participants and read:

What would you like for this disease to be called? Imagine that for the moment that a case definition that you find acceptable is adopted to go along with the name.

This is just to get a sense of what people are thinking and to generate ideas, not to try to determine what the final name should be.

You can provide up to three names.

Respondents could volunteer up to three names (labeled “First Choice,” “Second Choice” and “Third Choice”).

The following name possibilities were mentioned most frequently.

All other names (listed in Section 4 of the full report) received a maximum of five total mentions each.

This section all responses from Versions 1, 2 and 3 of the survey (N = 1147). Not all participants supplied name choices.

 

NUMBER OF FIRST CHOICE MENTIONS

370 – Myalgic Encephalomyelitis (ME)

116 – Neuro Endocrine Immune Disease (NEID)

70 – Ramsay’s Disease

44 – Systemic Exertion Intolerance Disease (SEID)

42 – Myalgic Encephalopathy

19 – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

7 – Nightingale’s Disease

6 – Gilliam’s Disease

3 – Bell Cheney Peterson Disease (BCP)

2 – Royal Free Disease

2 – Tahoe Disease

 

NUMBER OF TOTAL MENTIONS

598 – Myalgic Encephalomyelitis (ME)

240 – Neuro Endocrine Immune Disease (NEID)

221 – Ramsay’s Disease

103 – Myalgic Encephalopathy

98 – Systemic Exertion Intolerance Disease (SEID)

45 – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

35 – Nightingale’s Disease

29 – Bell Cheney Peterson Disease (BCP)

20 – Gilliam’s Disease

14 – Royal Free Disease

11 – Tahoe Disease

 

Note: The counts incorporate variants of the names, including Melvin Ramsay’s Disease, Florence Nightingale’s Disease, Lake Tahoe Disease, Royal Free London Hospital Disease, names with the word “syndrome” instead of “disease,” and misspellings. All mentions of “ME” without elaboration were counted toward Myalgic Encephalomyelitis.

 

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