#MEAction Policy Change: ME, not ME/CFS

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The staff of #MEAction, who run the communications platform that is our website, social media channels, and email list, have decided to adopt ME or myalgic encephalomyelitis for future communications about the disease, except where the name CFS or Chronic Fatigue Syndrome needs to be mentioned for the sake of clarity and to effectively communicate among populations that may be unfamiliar with the name ME. While we may still use the name CFS for that narrow purpose, we will no longer be using ME/CFS.
(For more on the distinctions between the #MEAction platform, #MEAction projects, and independently-organized #MEAction affiliates, see here.)
This decision came in part because of the results of the recent survey we distributed for the NIH Request for Information. In it we asked 1,700 respondents to check all names they deemed acceptable for the disease. Here were the results:
 

ME 67.88%
ME/CFS 28.53%
SEID 20.82%
CFS 6.53%

RFI Results

n=1700

Note: since respondents were permitted to check multiple selections, 67.88% represents not the percentage who prefer ME over other names, but the percentage that consider ME an acceptable name for the disease.
 
We know that no one solution will be acceptable to all members of the community.  However, as a global, grassroots organization moving toward a participatory democratic structure, we could not help but respond to this feedback from the community about what the majority of stakeholders want.
This also means that we will be using ME in the #MillionsMissing communications that we, the #MEAction platform, generate.
Here are some things that will change:

  • We will no longer be using the #mecfs hashtag on Twitter. We will use instead #pwme or #MyalgicE
  • In articles, newsletters, and other communications generated by our staff, we will use the term ME, except when quoting others or referring to research that does not use either the ICC or the CCC case definition

Here is what will not change:

  • CFS will still appear in some of our communications. In addition to the use cases mentioned above we may, for example, publish articles submitted to us by community members who use other terms. This new policy is an internal policy so it will not affect how we treat content through our open submission process. We still aim to pursue an ecumenical, big tent approach (see our FAQ for more information)
  • This decision does not apply to any independently-organized #MEAction affiliates, e.g., #MEAction USA or #MEAction Network United Kingdom.

#MillionsMissing Protest
In addition, for the #MillionsMissing protest, all national protest organizing committees (where they exist) will be left to independently decide what name to use. Where such a committee does not exist, the decision will be left to independent organizers.
The #MEAction Platform is a facilitator of #MillionsMissing and the independently-organized #MEAction groups and as such cannot dictate the internal policies of these groups. However, we hope that our decision will prompt discussions throughout the community of #MEAction organizers and volunteers about their communications policies. We hope all groups can reach decisions that best reflect their members’ priorities, goals, wishes and local circumstances.
Why now?
As #MillionsMissing grows, it will bring increased attention and mobilization to our community. #MillionsMissing presents a unique opportunity to substantially leave “CFS”, a profoundly misleading and stigmatizing name and concept, behind.
 
Sincerely,
The MEAction.net Team

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4 thoughts on “#MEAction Policy Change: ME, not ME/CFS”

  1. So glad this decision has been made. I cringe every time I see “me/cfs” or “CFS” or “ME/cfs” or “Chronic Fatigue Syndrome.” Thanks for all your hard work.

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