Survey Results (Part 1): Evaluating a Proposed Name to Replace “ME/CFS”

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March 17, 2015

By Lisa Petrison, Ph.D.

A recent survey presented to the community by Paradigm Change and ME Advocacy asked a total of 1,147 people about their opinions of a possible name change for the disease “ME/CFS,” as was recently proposed in an Institute of Medicine (IOM) panel report.

 

READ THE FULL SURVEY REPORT

 

In addition to collecting opinions about the proposed name (Systemic Exertion Intolerance Disease or SEID), the survey asked about the naming process involving the IOM committee, about the idea of the government adopting the name without further public dialogue, and about preferred name choices. Participants also were allowed to elaborate on their feelings in written comments.

Some of the most important overall findings are presented in this blog.

A more in-depth look at the results is presented in a 526-page report about the survey.  It is available for free download in PDF format.

Because some people have requested a Kindle version, the report is also available for 99 cents in Amazon Kindle format. (Note that this is the lowest price allowed for Kindle books and that 65% of the purchase price is retained by Amazon. Unfortunately there is not an option to make books available for free through Kindle.)

The survey results also are being sent directly to HHS secretary Sylvia Mathews Burwell and to others at HHS; to the heads of the NIH and CDC; to CFSAC members; to the IOM panel chair and some of the panel members; to the NIH P2P committee; and to clinicians and researchers focusing on the disease.

The large majority of respondents expressed negative opinions about the proposed name itself, about the naming process, and about the idea of the government using the proposed name.

People who stated that they had ME (rather than just ME/CFS or CFS) tended to express especially negative opinions. These findings are interesting enough – and potentially important enough – that the results will be summarized separately in a subsequent blog post.

 

resized_Overall Citizenship 1

 

SURVEY BACKGROUND

About 88% of all participants stated that they had ME, ME/CFS, CFS or a combination of these. About 17% described themselves as advocates.

About 39% of respondents to survey were from the U.S. The remainder were from other countries, including the UK (18%), Belgium (14%), Canada (9%), Australia (6%), Netherlands (6%) and many others.

A page of information about the survey was presented on the Paradigm Change and ME Advocacy websites.

Most participants were recruited by mentioning the survey on forums, blogs and mailing lists directed at those with ME, ME/CFS, CFS or CEBV. Many people also shared information about the survey on social media.

A small percentage of respondents (154 people) were recruited by mentioning the survey on forums and mailing lists directed at people with related illnesses, including chronic Lyme, fibromyalgia, Gulf War illness, toxic mold illness and multiple chemical sensitivity.

People from other countries were slightly less likely to be as strongly positive or as strongly negative as were people from the U.S.  People recruited from sources focusing on related diseases were a little less negative. In general though, the results were very similar for all these groups.

The small number of clinicians participating in the survey (32 people) were more negative about the name itself and were more likely to state that the naming process had not resulted in a legitimate name. They were more likely to state that the name sounded like “laziness, fatigue or deconditioning”; more likely to state that it sounded like it could be a psychological condition; more likely to say that it sounded bogus rather than scientific; and more likely to express concern that the name would cause other abnormalities such as those of the brain to be less studied.

The following results are for just the main survey (which includes people recruited through sources focusing on ME, ME/CFS, CFS and CEBV), with a total of 1,004 respondents. About 89% of these individuals said they were patients with one of those conditions and 17% said they were advocates.

 

resized_Overall - Opinion

 

THE NAME “SEID”

This question was asked of all participants (N = 1004). It read:

Please click the box below that best describes your opinion about the use of SEID (systemic exertion intolerance disease) as the new name for this disease.

About 62% of respondents said that the name was pretty bad or very bad. About 18% said the name was pretty good or very good.

More than a third of respondents (38%) said that the name was very bad.

 

resized_Overall - Legitimate

 

NAME LEGITIMACY

All participants (N = 924) were asked to state whether they agreed or disagreed with the following statement. It read:

The naming process has failed to result in a legitimate name.

About 70% of respondents agreed that the naming process had failed to result in a legitimate name. About 15% disagreed.

About 46% of respondents strongly agreed that the naming process had failed to result in a legitimate name.

 

resized_Overall - Angry

 

FEELING ANGRY

All participants (N = 924) were asked to state whether they agreed or disagreed with the following statement:

I feel angry about how the naming process has been handled so far.

About half of participants (51%) agreed or strongly agreed that they felt angry. About 18% of participants disagreed or strongly disagreed that they felt angry.

About 28% of participants strongly agreed that they felt angry about how the naming process has been handled so far.

 

resized_Overall Start Uisng

 

GOVERNMENT ADOPTION

This question was asked of all participants (N = 1002). It read,

Imagine that the U.S. government went ahead and started using the name SEID (systemic exertion intolerance disease) without public dialogue on this topic. Would you see that as acceptable or unacceptable?

About 72% of respondents stated that this would be somewhat unacceptable or totally unacceptable. About 19% of respondents said that it would somewhat acceptable or totally acceptable.

More than half of the respondents (55%) said that this would be totally unacceptable.

 

V2 Listen IOM

 

PATIENT INPUT

A subgroup of survey participants (N = 301) were asked whether they agreed or disagreed with the following statement:

It is appropriate for the government to listen to the IOM and not to patients about what the name should be.

About three-fourths of participants (76%) stated that they disagreed or strongly disagreed with this statement. About 10% stated that they agreed or strongly agreed.

Almost half of respondents (49%) strongly disagreed with this statement.

Note that these participants had previously seen a question listing only positive attributes of the name, potentially biasing the results. The results might have been even more negative if that had not occurred.

 

V2 Plenty Input (2)

 

PREVIOUS INPUT ABILITY

The same subgroup of survey participants (N = 295) were asked whether they agreed or disagreed with the following statement:

Patients have been provided with plenty of input ability already during the naming process.

More than two-thirds of participants (69%) disagreed or strongly disagreed. About 40% strongly disagreed.

About 6% agreed or strongly agreed.

Note that these participants had previously seen a question listing only positive attributes of the name, potentially biasing the results. The results might have been even more negative if that had not occurred.

A different subgroup of survey participants (N = 645) were asked a different version of the same basic question:

Patients need to have more input ability in the naming process.

More than three-quarters (76%) agreed or strongly agreed with this statement. About 8% disagreed or strongly disagreed.

Note that these participants had previously seen a question listing only negative attributes of the name, potentially biasing the results. The results might have been less negative if that had not occurred.

 

V1 Aspects

 

POSITIVE AND NEGATIVE ASPECTS OF “SEID”

Participants were provided with a list of positive and/or negative aspects of the proposed name and asked to state which, if any, they agreed with.

The highest levels of agreement for participants in the main survey were on the following statements

“It sounds like there’s just one symptom” (70%).

“It sounds like laziness, fatigue or deconditioning” (66%).

“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)” (54%).

About 55% of participants agreed that the proposed name was better than CFS, while about 21% agreed that it was better than ME/CFS.

The percentages agreeing that each of these statements was true of the proposed name is on this website page and in the report.

 

All Name Choices 2

 

NAME CHOICES

An open-ended question asked participants to state their top three preferred names for the disease. The main results are on this website page and in the Part 4 of the survey report.

The question instructed participants to imagine that the name would be accompanied by an acceptable definition and promised that these results would not be used to actually select a final name for the disease.

At least with the question phrased this way, Myalgic Encephalomyelitis (ME) was by far the favorite name. It received almost as many first-choice mentions as all other names combined. In addition, it received substantially more than twice as many total mentions as any other name.

The next most popular names were Neuro Endocrine Immune Disease (NEID) and Ramsay’s Disease.

The name proposed by the IOM committee, Systemic Exertion Intolerance Disease (SEID), received about 10% as many first-choice mentions as did Myalgic Encephalomyelitis (44 vs. 370). SEID received less than 20% as many total mentions as did ME-itis (98 compared to 598).

The mentions of SEID were about the same in number as the mentions of the ME variant Myalgic Encephalopathy.

Mentions of SEID were about twice the number of the mentions of ME/CFS.

 

Picture13

 

MOVING FORWARD

Implications of the survey with regard to next steps are in Part 2 of this blog, called “Survey Results (Pt. 2): Moving Forward with Choosing the Right Name.”

GO TO PART 2 OF THE BLOG

 

Again, the full report is available as a free PDF document.

DOWNLOAD THE FULL PDF REPORT

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A Note About Weighted Averages:

Some participants in this survey were asked to rate a list of positive aspects of the proposed name, while others were asked to rate a list of negative aspects of the proposed name. Since the two groups were not equal in size, the use of weighted averages is used to address bias in the results. See Part 4 of the survey report for more details.

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More information about the IOM report is in this Paradigm Change blog post.

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For permission to reprint this blog post in its entirety, please write to:

lisapetrison AT gmail DOT com.

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Any and all civil comments from actual humans not selling commercial products are welcome on this blog.

Thanks much for reading this blog.

 

This article was originally published on the Paradigm Change blog, and reader comments about it may be found there.