Tell HHS What You Think of the IOM Committee’s Proposed Name for the Disease Currently Called “ME/CFS”

Reposted with permission and collaboration from http://paradigmchange.me/wp/name-evaluation/

 

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LINK TO THE SURVEY

 

This page provides information about a short survey designed to evaluate a proposed new name for the disease that the U.S. government is currently calling ME/CFS.

On February 10, a report on this disease from a committee of the Institute of Medicine (IOM) was released.

One of the recommendations was that the term SEID (systemic exertion intolerance disease) be used as the new name for the disease.

The IOM recommendations will not automatically be adopted. It is up to the government to decide what happens.

For instance, Department of Health and Human Services (HHS) spokesperson Dr. Nancy Lee commented on the report, “We are committed to working with our Federal partners, stakeholders, and experts in the field, as well as with the HHS Chronic Fatigue Syndrome Advisory Committee, to review the report’s recommendations and appropriate next steps.”

The sole goal of this survey project is to collect input on what patients, advocates, professionals and others think of the proposed name.

Deciding on a different name is not a goal of this particular survey. If appropriate, that will be done in a follow-up survey.

The findings of this survey will be sent to individuals at HHS (including Secretary Sylvia Mathews Burwell) for their review.

In addition, the survey findings will be sent to the members of CFSAC (Chronic Fatigue Syndrome Advisory Committee to HHS), so that the committee will be more able to make an appropriate recommendation to HHS about what to do about the name.

Hopefully the results will provide HHS with valuable information that will make it more likely that an appropriate decision about the name is made.

The findings also will be shared with other government officials (such as those from the NIH and CDC) and with the media (via ME Advocacy’s PR firm, Crowds on Demand).

In order for this survey to be effective at influencing policy, a high level of participation is very important.

Please share the survey as widely as possible and ask others to fill it out!

 

A preview of the survey questions is on this website page.

 

Following is some more information on the survey:

* The deadline for survey responses is March 1.

* The survey is estimated by Survey Gizmo to take four minutes to fill out.

* Anyone can participate in the survey. This includes people with ME and/or CFS; people with other chronic neuroimmune illnesses; researchers; clinicians; advocates; and the general public.

* Views of these different groups will be analyzed in a way that they can be presented as separate from one another in the final report.

* The survey is presented jointly by ME Advocacy and Paradigm Change.

* If anyone has trouble filling out the survey in the format provided, we will be happy to send you the text via email so that you can type in your answers and send them back to us via email. Your identity will remain confidential and the email will be destroyed after the data is recorded. Please send requests to:  info AT paradigmchange DOT me

* A huge amount of thanks goes out to the many people who made the survey better by taking a preliminary version!

* Those who took a preliminary version of the survey also will need to take the final one to have their answers count. So that they do not need to be rewritten, essay answers received during the development phase are on this page.

* One of the questions on the survey asks about preferred names. Some of the names recently proposed by patients or advocates are listed in this blog post.

* No matter what your feelings about the proposed name, your participation is very important in this effort!

 

We are very grateful to everyone who participates in this survey project.

Thanks much for helping out by answering the survey and by encouraging others (including healthy family or friends) to participate.

 

Sincerely,

Mary Ann Kindel
ME Advocacy

Lisa Petrison, Ph.D.
Paradigm Change

 

LINK TO THE SURVEY

 

 


Showing 6 reactions

  • commented 2015-02-22 19:32:37 -0500
    Hi May Twelfth. I’ve had some people state that they were able to complete the survey from their phones, but I unfortunately can’t guarantee that it will be accessible on all phones.

    Since I know that some people are too sick to use a regular computer or laptop, we have a disability accommodation which is as follows:

    >If anyone has trouble filling out the survey in the format provided, we will be happy to send you the text via email so that you can type in your answers and send them back to us via email. Your identity will remain confidential and the email will be destroyed after the data is recorded. Please send requests to: info AT paradigmchange DOT me

    Probably Mary Ann would be willing to accept responses from people, input it into the survey system and then destroy the email if anyone feels more comfortable sending their responses to her instead of me.

    The survey results will be compiled into a complete report, which will be sent to HHS, CFSAC, other government officials and the media.

    The report also will be accessible to this community and the general public. I will be posting about this on the Paradigm Change blog, and I imagine that they will be up here on ME Advocacy as well.

    Please let me know if you have any more questions. Thanks much for your interest.

    Best,

    Lisa Petrison
    Paradigm Change
  • commented 2015-02-22 16:45:58 -0500
    Hi @may Twelfth, I’m checking on those answers for you. Alternatively, contact Lisa Petrison via the Paradigm Change website, as she is the one who set up the survey, and we’re just sharing it.
  • commented 2015-02-22 16:15:46 -0500
    Also just started it and it won’t work on my phone. It doesn’t let you scroll to see all the possible answers to choose. Is there a mobile version of the survey?
  • commented 2015-02-22 16:11:02 -0500
    Where do we see the results of the survey?
  • commented 2015-02-22 11:32:05 -0500
    Well that’s one symptom covered now lets cover the rest of them.
  • commented 2015-02-22 05:37:40 -0500
    this is a very confusing sounding and meaningless name. I feel this way because it doesn’t take into account many of the CNS (central nervous system) symptoms I and many others have experienced over the 30 years I have been sick. When oh when will they LISTEN!!!