Name Evaluation Survey Questions

Following are the questions included on the survey called “Evaluating the IOM’s Proposed New Name for ‘ME/CFS.'”

 

GO TO THE SURVEY

 

Introduction:

This brief survey has the goal of evaluating a proposed new name for the disease that the U.S. government is currently calling ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).

An Institute of Medicine (IOM) committee prepared a report on the disease, recommending to the government that a new definition and a new name be adopted.

The name that the IOM committee recommended is SEID (systemic exertion intolerance disease).

This survey is designed to allow patients, advocates, professionals and the general public to express their opinions about the idea of adopting SEID as the new name for this disease.

It is not designed to determine what the final name should be.

The survey is presented by MEadvocacy.org and ParadigmChange.me. It was developed by a team led by Lisa Petrison, Ph.D.

More information about this survey can be found at the following link (cut and paste in a different window):

https://paradigmchange.me/wp/name-evaluation/

Thanks much for participating!

 

Question 1:

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.

* The name is very good

* The name is pretty good

* The name is so-so

* The name is pretty bad

* The name is very bad

* I don’t know what I think

 

Question 2 – Version 1:

This page is optional. Answer if you are up to it.

Some people have expressed mixed or negative opinions about the proposed name. We want to know the reasons why.

Since even people who like the name may have specific concerns about it, this question is being asked of all survey participants.

Following is a list that includes a variety of comments that people have used to support their position that the proposed name should not be adopted.

Check the box next to each statement if you agree that it is true with regard to the proposed name SEID (systemic exertion intolerance disease).

There also are boxes toward the end of the list to be checked by those who do not feel there is anything wrong with the name or who are not sure.

You can check as many boxes as you like.

* It is too hard to remember.

* I don’t like the acronym SEID.

* It sounds like fatigue, laziness or deconditioning.

* It sounds like it could be a psychological illness.

* It sounds like there’s just one symptom.

* It will make it less likely that other abnormalities (such as of the brain) will be studied.

* It sounds bogus instead of scientific.

* It does not serve the needs of severe patients.

* It does not point back to the history of the disease.

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

* It’s misleading in general.

* Another name would be much better.

* There’s nothing wrong with the proposed name.

* I’m not sure.

 

Question 2 – Version 2:

2. This page is optional. Answer if you are up to it.Some people have expressed positive opinions about the proposed name. We want to know the reasons why.Since even people who don’t like the name may feel positive about certain aspects of it, this question is being asked even to people who said the proposed name is not a good one.Following is a list that includes a variety of comments that people have used to support their position that the proposed name should be adopted.

Check the box next to each statement if you agree that it is true with regard to the proposed name SEID (systemic exertion intolerance disease).

There also are boxes toward the end of the list to be checked by those who do not feel there is anything good about the name or who are not sure.

You can check as many boxes as you like.

*It conveys the full scope and complexity of the disease.
* It conveys the severity of the disease.
* It conveys the idea that any kind of exertion (physical, cognitive, emotional) can be harmful.
* It conveys the idea that exertion can harm many organ systems in these patients.
* It conveys the idea that exertion can negatively affect many aspects of patients’ lives.
* It accurately describes the core symptom of the disease.
* It will result in doctors and researchers understanding what the disease is like.
* It will not have a stigma associated with it.
* It is better than myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
* The fact that it was chosen by professionals makes it credible.
* I’m not sure.

 

Question 3 – Version 1

If you have other concerns about the proposed name, please list them here.

You can write as much as you like in this box.

Question 3 – Version 2

If you believe there are other positive things about the proposed name, please list them here.

You can write as much as you like in this box.

 

Question 4:

Please state whether you agree or disagree with these statements about how the naming process involving the IOM committee has been handled so far, resulting in the proposal of the name SEID (systemic exertion intolerance disease).

You can skip to the next page if you feel you don’t know very much about the naming process.
Choices:

* Strongly agree

* Somewhat agree

* Neither agree nor disagree

* Somewhat disagree

* Strongly disagree

* Not sure

 

Items:

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

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

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

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

 

Question 5:

Imagine that the U.S. government went ahead and started using the name SEID (systemic exertion intolerance disease) to refer to this disease without further public dialogue on the topic.

Would you see that as acceptable or unacceptable?

* Totally acceptable

* Somewhat acceptable

* Neither acceptable nor unacceptable

* Somewhat unacceptable

* Totally unacceptable

* Not sure

 

Questions 6-8:

What would you like for this disease to be called?  Imagine 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.

First Choice: ____________

Second Choice: ___________

Third Choice: __________

 

Some name ideas recently proposed by patients and advocates are at this link (please cut and paste in another window).

www.paradigmchange.me/wp/proposed-names/

 

Question 9:

Which of the following describe you? Check all that apply.

* ME patient

* ME/CFS patient

* CFS patient

* Former ME and/or CFS patient

* Patient with another chronic neuroimmune condition (such as fibro, GWI, Lyme, mold illness, MCS or ASD)

* Clinician

* Researcher

* Advocate

* None of the above

* Not sure

 

Question 10:

Where is your citizenship?

* US

* Another country – write the name in this box ___________________

 

Question 11: 

Feel free to make additional comments about the topic of the name in this box. You can write as much as you like.

This is the last question of the survey. Press SUBMIT below when finished.