Name preference? CFS, ME-itis (2 versions), ME-opathy, SEID, or Ramsay

[MeSci]

I started a poll on myalgia today after reading a post by @nandixon pointing out that some of us don't have myalgia.

The results may affect your voting decision here.

 

[Dolphin]

Another survey on the name. One doesn't need to be a member of a forum to fill it in.

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

 

[MeSci]

Another survey on the name. One doesn't need to be a member of a forum to fill it in.

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

and you don't have to be a US citizen to do it.

 

[MeSci]

Ramsay disease: VIA: Maryann Spurgin with Liz Willow and 4 others.

1. Dr. L. O. Simpson's work on misshapen RBC's lasting for days following excercise, leading to inadequate delivery of oxygen to tissues & organs & failure of the blood to clear toxins.

There is an old thread about RBC shape in ME/CFS here. Looks really interesting.

 

[Dolphin]

Another poll:

What name would YOU choose for Chronic Fatigue Syndrome?
http://www.prohealth.com/library/showarticle.cfm?libid=19597

 

[dean]

Idiopathic is a good old fashioned simple term understood as signifying a real disease by all clinicians, researchers and scientists. It should be included as part of the name for our thing.

 

[wastwater]

Reject every name including ME

 

[ukxmrv]

Idiopathic is a good old fashioned simple term understood as signifying a real disease by all clinicians, researchers and scientists. It should be included as part of the name for our thing.

I'm not so sure about that? When CFS was invented they used Ideopathic fatigue to describe other fatigue of an unknown origin that was not CFS. There was no understanding or explanation that this was a separate disease or groups of diseases as far as I could see. They were describing a symptom with an unknown origin in general.

 

[dean]

I'm not so sure about that? When CFS was invented they used Ideopathic fatigue to describe other fatigue of an unknown origin that was not CFS. There was no understanding or explanation that this was a separate disease or groups of diseases as far as I could see. They were describing a symptom with an unknown origin in general.

You are right. For some unclear reason they differentiated CFS from idiopathic CF by the difference of having 3 instead of 4 out of 8 symptoms. One symptom less and you had simply chronic fatigue instead of chronic fatigue syndrome. I don't understand why they did this. It has not been of use and the distinction has been virtually ignored. All of ME/CFS etc is idiopathic.

 

[Dolphin]

Another poll. People can vote (once) throughout March 2015:

Should CFS and/or ME be renamed Systemic Exertion Intolerance Disease (SEID) as recommended in the U.S. Institute of Medicine Report?
http://www.meassociation.org.uk/

Accompanying blog from the ME Association:

Why our latest website poll is asking about a new name for the illness
http://www.meassociation.org.uk/201...bout-a-new-name-for-the-illness-1-march-2015/

 

[Tom Kindlon]

My new blog post on the name:

Brief Thoughts on why I'm passionate to get rid of "Chronic Fatigue Syndrome"
http://forums.phoenixrising.me/index.php?entries/brief-thoughts-on-why-im-passionate-to-get-rid-of-chronic-fatigue-syndrome.1730/

 

[Sidereal]

Well, I'll be damned. Even Byron Hyde of all people agreed in his 1992 textbook on ME/CFS that ME-itis is an incorrect name. Page 4:

Many readers may not understand the significance of the above term that has been used in Great Britain for many years to describe this disease process. My refers to muscle and algic to pain. Encephalo refers to brain, myel to spinal cord and itis denotes inflammation. The name Myalgic Encephalomyelitis is consistent with our knowledge of the disease process except for the suffix itis; there is no evidence of active inflammation. A pathologically more appropriate name would be Myalgic Encephalomyelopathy -opathy simply referring to the fact that there is pathology.

 

[Dolphin]

Survey on the Name and Criteria for ME or CFS
http://bit.ly/1Lua8vF

Discussion thread:
http://forums.phoenixrising.me/inde...on-the-name-and-criteria-for-me-or-cfs.43371/