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What do you think of the IOM's new name for ME/CFS? VOTE!

What do you think of the IOM's new name for ME/CFS: SEID

  • Better than the status quo, but I wouldn't endorse it myself

    Votes: 27 16.9%
  • Better than the status quo, patients should get behind this

    Votes: 32 20.0%
  • No better than the status quo (most reseachers/clincians use CFS, occasionally ME/CFS)

    Votes: 19 11.9%
  • A waste of time

    Votes: 58 36.3%
  • Better than the status quo, but I'm unsure at this time whether I would endorse it myself.

    Votes: 24 15.0%

  • Total voters
    160
  • Poll closed .

Dolphin

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I previously went to a specialist (a cardiologist) to try to get help for my orthostatic symptoms (problems being upright). He was focused on getting me moving: he wanted me to get me "out of the wheelchair". I think it would be easier to direct a doctor away from that approach with a name like "Systemic Exertion Intolerance Disease" than, say, "Chronic Fatigue Syndrome".
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Further information on problems with eponyms in medical terminology


http://en.wikipedia.org/wiki/List_of_eponymously_named_diseases

-----------------

http://www.the-rheumatologist.org/details/article/1066231/Medical_Societies_Ask_Whats_in_a_Name.html

From: The Rheumatologist, May 2011
Medical Societies Ask, What's in a Name?

ICD-11, history, and confusion a catalyst for replacing eponyms with descriptions in disease nomenclature

-------------------

Paper on eponyms and clinical terminology systems:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3613025/

Case Report Medical Eponyms
An Applied Clinical Informatics Opportunity


Appl Clin Inform. 2012; 3(3): 349–355.
 

Dolphin

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I know plenty of people who need home help and care services, but often struggle to get assessed as needing them.

I think they could have a better chance of being approved and getting the required amount of help with a name like “systemic exertion intolerance disease” than “chronic fatigue syndrome” (and maybe myalgic encephalomyelitis also).
 

MeSci

ME/CFS since 1995; activity level 6?
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Further information on problems with eponyms in medical terminology


http://en.wikipedia.org/wiki/List_of_eponymously_named_diseases

-----------------

http://www.the-rheumatologist.org/details/article/1066231/Medical_Societies_Ask_Whats_in_a_Name.html

From: The Rheumatologist, May 2011
Medical Societies Ask, What's in a Name?

ICD-11, history, and confusion a catalyst for replacing eponyms with descriptions in disease nomenclature

-------------------

Paper on eponyms and clinical terminology systems:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3613025/

Case Report Medical Eponyms
An Applied Clinical Informatics Opportunity


Appl Clin Inform. 2012; 3(3): 349–355.
I find the arguments against eponyms weak and easy to counter. If there are two similar names for different diseases - change one. The proposals are to change names anyway.

Does the political ideology of the person after whom a disease in named really matter? If there are really strong objections - again, use another name - of one kind or another, as a name change is being proposed anyway.

Different names used in different countries - this also occurs with non-eponymous disease names, and some of these are extremely difficult to translate between languages. I think that the same eponymous names would actually be easier to keep across different countries.

And illnesses referred to in the articles/papers are diseases which have been well-characterised following a lot of research. Ours hasn't. Ours does not have just one or two characteristic features, we don't yet know if there are subgroups with different causes/symptoms, etc.

I think that an eponymous name is ideal for our current situation. Our illness/illnesses can always be renamed when we have better understanding of it/them.
 

picante

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I have been asked how to translate 'exertion intolerance' into one of the languages I know and it is impossible to do this without *very* negative connotations (English is a very word-rich language with some terms being very specific... which is not always the case in other languages).
I just checked TERMIUM, the Canadian government's bilingual terminology database. "Systemic Exertion Intolerance Disease" has not made it into the database yet. However, I did find exertional rhobdonyolysis.:
http://www.btb.termiumplus.gc.ca/tp...1&index=ent&srchtxt=EXERTIONAL RHOBDONYOLYSIS

I'm thinking we should hold out for that one. I really like it.
 

MeSci

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lansbergen

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I just checked TERMIUM, the Canadian government's bilingual terminology database. "Systemic Exertion Intolerance Disease" has not made it into the database yet. However, I did find exertional rhobdonyolysis.:
http://www.btb.termiumplus.gc.ca/tpv2alpha/alpha-eng.html?lang=eng&i=1&index=ent&srchtxt=EXERTIONAL RHOBDONYOLYSIS

I'm thinking we should hold out for that one. I really like it.
I do not.

Horses can get stiff and not able to move from eating to much protein. Ever seen a horse after it ate to much oats?
 
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MeSci

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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/
Thanks - done it! It's clear that one doesn't need to be a US citizen to do it, because it asks you to state your nationality near the end. I was also surprised to see that it included the apostrophe-s in the list of eponymous names, which I thought tends to be dropped in the US. Acheson's name was not in the list.
 

Dolphin

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Dolphin

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So, what do you think about the new name?
March 2
by Erica Verrillo
http://cfstreatment.blogspot.ie/2015/03/so-what-do-you-think-about-new-name.html
Info on the name change issue plus links to 3 polls (I have highlighted these three polls before).

Interesting to read neither (Paul) Cheney nor Daniel (Peterson) wants the illness named after them. It may make such a name a non-runner.

Note: while the blogger is correct that the report said 94% had pain, she omits that only 73% had myalgia = muscle pain.
 
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MEA is running a website poll for UK residents on the IoM name change proposal

Current voting after first five days below

The figure of 60% for 'don't like SEID' has remained fairly steady since we opened the poll

The MEA Quick Survey

  • Should CFS and/or ME be renamed Systemic Exertion Intolerance Disease (SEID) as recommended in the U.S. Institute of Medicine Report?
    • Yes - but for CFS only (12%, 48 Votes)

    • Yes - but for ME only (4%, 18 Votes)

    • Yes - for CFS and ME (14%, 57 Votes)

    • Not sure (8%, 34 Votes)

    • No opinion (1%, 5 Votes)

    • No - do not like SEID (61%, 253 Votes)


      Total Voters: 415
 

Dolphin

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Systemic Exertion Intolerance Disease gives permission not to exert, I think, and so somebody should be eligible for supports e.g. disability payments, aids, etc.

Chronic Fatigue Syndrome can be spun in various ways and is more vulnerable to people saying one should just push through, I think.