Survey deadline today (March 1st)

[M Nosson]

I don't think this has been posted here yet...
Some of you may have seen or participated in surveys on the SEID name proposal.

This survey is possibly different than the one you have seen.
It is co-sponsored by MEadvocacy.org and ParadigmChange.me.

Here is a page of information about it:
http://paradigmchange.me/wp/name-evaluation/

It takes 4 minutes, to fill out, is interesting, and non-Americans as well as Americans are very much welcomed and asked to participate, I am told.

I think it's a good survey for gauging patient response to the name. Apparently over 1060 people have already participated. It seems like the more responders, the better, so...

Please consider taking this survey if you can! :

Here is the survey link:
http://www.surveygizmo.com/s3/2020116/Evaluating-the-IOMs-Proposed-Name-for-MECFS

 

[Kati]

This survey is unbalanced. results will be unbalanced. results are not representing me. I refuse to participate.

 

[Cheshire]

Totally biased.

Evaluating the IOM's Proposed New Name for "ME/CFS"
2. 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.
• I have other concerns - specify below.
• There's nothing wrong with the proposed name.
• I'm not sure.

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

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

But nowhere could I find a page where they try to understand the positive aspects of the new name So they won't find any....


This type of unbalanced polls is not what I'm expecting of an organization supposed to help ME/CFS/SEID sufferers, whatever you call it, I don't care (heu, really don't like CFS) I want a cure!


What we need is promotion of science, fundraising, spreading of knowledge.

Those we need to counteract are not the members of the IOM panel, but those promoting a psychogenic explanations for that disease.



(And believe me I'm not enthusiastic about this new name, but I think there are positive elements in it)

 

[slayadragon]

I am the developer of this survey.

Some people are being asked only about positive elements, and some people are being asked only about negative elements. Some people are being asked about both.

The direct link above is incorrect. Here is the correct link:

http://www.surveygizmo.com/s3/2021068/rev-Evaluating-the-IOM-s-Proposed-New-Name-for-ME-CFS


The report of the survey findings (including comments) will be delivered to HHS, CFSAC, other government officials and the media. It also will be released publicly.

Thanks much for your interest.

Lisa Petrison, Ph.D.
Paradigm Change