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 .

ahimsa

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The only way to translate 'intolerance' into that particular language would be either with connotations of not being willing to be tolerant (i.e. bigoted) or with connotations of emotional oversensitivity (i.e. conjuring images of Victorian ladies who cry over everything and just need to toughen up).
Dumb question, maybe, but would it be possible to use a phrase like "exertion problem" or "exertion dysfunction"? Does it have to be a literal, word for word translation? Just wondering.
 

Dolphin

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I have read/skimmed the messages as well as discussion in other places so I can't remember what was said where.

I don't think it has been sufficiently highlighted that "Chronic Fatigue Syndrome" means one can end up with criteria that don't require post-exertional exacerbation of symptoms.

So one can get
(i) the Oxford "Chronic Fatigue Syndrome" criteria that just require mental and physical fatigue;
(ii) the Fukuda criteria for "Chronic Fatigue Syndrome" that don't require post-exertional exacerbation of symptoms;
(iii) the CDC's empiric criteria that cover 2.54% of the population and allow lots of people in who have major depressive order.

These definitions have led to all sorts of problems in the field.

Having the term "Systemic Exertion Intolerance Disease" ensures that whatever the criteria post-exertional exacerbation of symptoms will be part of it.

So my preference for the moment is to move away from "Chronic Fatigue Syndrome" and use "Systemic Exertion Intolerance Disease" instead.
 

beaker

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Actually, as it is so complex and variable, maybe it would be best to name it after someone - someone who defined it correctly a long time ago.

As @Sean suggested here - Ramsay's disease. (I think others have too.) That gets my vote, I think.
ALS is also known as Lou Gerig's disease. Why not have 2 names like that. Maybe a decent compromise. SEID aka Ramsey's disease. But then, everyone knew lou gerig. Only our community knows Ramsey.
nevermind.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Quote from an earlier thread:

"Dr. Derek Enlander suggested that we could re-name the illness ‘Ramsay’s disease’ in the grand tradition of calling diseases after the people who first documented them."


WHO discourages the use of eponyms:

http://www.who.int/classifications/icd/revision/Content_Model_Reference_Guide.January_2011.pdf

(Page 59)

WHO, ICD-11 Content Model Reference Guide


Use of Name of Noun formed after a person (eponyms)

The naming of diseases after proper nouns or people (e.g. eponyms) are explicitly discouraged, except in historical cases where the eponym is already well-established (Alzheimer, Parkinson, etc.). However, eponyms can be entered into the tool as synonyms. Eponyms are used without the Genitive “’s”.

~~~~~~~~~~~~~~~~~~~~

SNOMED CT


http://www.isb.nhs.uk/documents/isb-0034/amd-26-2006/uktceditprinc.pdf

Editorial principles for UK Edition of SNOMED CT

5.1.5 Eponyms

(Pages 19 and 20)
 

justy

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For me, living in the UK I imagine the whole discussion is pointless - Dr's and the general public will continue to call it CFS and I will continue to call it M.E. I can just imagine the reaction I will get if I tell people I have SEID (and i'm pronouncing it said for the record) and that it used to be M.E or CFS, but THE AMERICANS changed it - people will just laugh - as if the disease isn't ridiculous enough in the eyes of the public.

Another point - if I pronounce it SAID - as in 'I said we shouldn't do that' then people in the UK may easily confuse that with SAD - SEASONAL AFFECTIVE DIOSRDER - which means being depressed in the winter due to a lack of light.
 

Cheshire

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Yes, this will likely be a problem.

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). The only way to translate 'intolerance' into that particular language would be either with connotations of not being willing to be tolerant (i.e. bigoted) or with connotations of emotional oversensitivity (i.e. conjuring images of Victorian ladies who cry over everything and just need to toughen up). The word 'exertion', with the meaning it has in English, simply does not exist in that particular language and anything similar in meaning would, paired with the word 'intolerance', immediately lead to people picturing someone unwilling pull their weight...




Agree.
Exertion does not exist in French. In the articles I read, it was translated as "effort", which I think is not exactly the same, I think I get the difference, but couldn't explain it.

I'd be really happy if someone could explain the exact distinction between exertion, exercice and effort
 

WillowJ

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Exertion does not exist in French. In the articles I read, it was translated as "effort", which I think is not exactly the same, I think I get the difference, but couldn't explain it.

I'd be really happy if someone could explain the exact distinction between exertion, exercice and effort
Effort relates to the amount of work it takes to do something.

Exercise relates to doing activity (like running, for example), especially just for the sake of doing activity, particularly with the goal of improving health. But one can get exercise while doing sports or something else that is active, for fun or for work.

Exertion relates to the process of spending energy to do (or think) something.
 

adreno

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I would also have huge problems translating it to my language, without it sounding completely ridiculous and losing some of its original meaning. In any case, if the definition is only changed in the US, and not worldwide, it is going to bring more confusion, both clinically and in research.
 

MeSci

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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). The only way to translate 'intolerance' into that particular language would be either with connotations of not being willing to be tolerant (i.e. bigoted) or with connotations of emotional oversensitivity (i.e. conjuring images of Victorian ladies who cry over everything and just need to toughen up). The word 'exertion', with the meaning it has in English, simply does not exist in that particular language and anything similar in meaning would, paired with the word 'intolerance', immediately lead to people picturing someone unwilling pull their weight...
I just looked up 'intolerance' in the Oxford and Cambridge dictionaries, and the first definitions that come up relate to disapproval or refusal to accept, both in US and UK English. Much as you suggest. :(
 

MeSci

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ALS is also known as Lou Gerig's disease. Why not have 2 names like that. Maybe a decent compromise. SEID aka Ramsey's disease. But then, everyone knew lou gerig. Only our community knows Ramsey.
nevermind.
In the UK ALS is usually called Motor Neuron(e) Disease and hardly anyone has heard of Lou Gehrig.
 

MeSci

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Quote from an earlier thread:

"Dr. Derek Enlander suggested that we could re-name the illness ‘Ramsay’s disease’ in the grand tradition of calling diseases after the people who first documented them."


WHO discourages the use of eponyms:

http://www.who.int/classifications/icd/revision/Content_Model_Reference_Guide.January_2011.pdf

(Page 59)

WHO, ICD-11 Content Model Reference Guide


Use of Name of Noun formed after a person (eponyms)

The naming of diseases after proper nouns or people (e.g. eponyms) are explicitly discouraged, except in historical cases where the eponym is already well-established (Alzheimer, Parkinson, etc.). However, eponyms can be entered into the tool as synonyms. Eponyms are used without the Genitive “’s”.

~~~~~~~~~~~~~~~~~~~~

SNOMED CT


http://www.isb.nhs.uk/documents/isb-0034/amd-26-2006/uktceditprinc.pdf

Editorial principles for UK Edition of SNOMED CT

5.1.5 Eponyms

(Pages 19 and 20)
Well, I disagree with the WHO! Eponyms can be much shorter, can encompass a huge range of symptoms and characteristics for a complex illness, and don't have to be translated. Easy!
 
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I've just gave it a test run on a complete stranger. Electrician is in my building. I crawled to the door to deal with it.

He's horrified because i'm on the floor etc.

He asks whats wrong with me and i reply,

'I have SEID.'
Greeted with silence.

'My illness is SEID.'
Also greeted with silence.

He thought i had a problem with speech and finishing sentences. Not joking.

He says, 'you're illness is said to be what?'

If thats the future. I'm most definitely sticking with ME.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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With regard to the potential future inclusion of SEID within ICD-10-CM:

ICD-10-CM is a "Clinical Modification" of the WHO's ICD-10.

Adapting ICD-10 for U.S. specific use has been the responsibility of NCHS (though all modifications to the ICD-10 must conform to WHO conventions for the ICD). It has not been adapted by WHO, Geneva.

ICD-10-CM contains no definitions or other textual descriptions.

ICD-10-CM is scheduled for implementation on October 1, 2015.

The FY 2015 release of ICD-10-CM is available for viewing and is currently subject to a partial code freeze.

During partial code freeze, only limited updates to the ICD-10-CM code sets to capture new technologies and diseases (for example, newly identified viruses or to incorporate corrections) can be considered.

Any code requests that do not meet the criteria for consideration for inclusion during a code freeze will be evaluated for implementation within ICD-10-CM on and after October 1, 2016 once the partial freeze has ended.

Submitting proposals for corrections, deletions, additions, creation of unique new codes, insertion of new inclusion terms to existing codes etc. is done through a public process via the ICD-10-CM Coordination and Maintenance Committee meetings.

Suggestions for modifications to the ICD-10-CM code sets come from the public and private sectors, the coding industry, the APA (in respect of Chapter 5), NCHS, medical professional bodies, clinicians, patient organizations, individuals with an interest etc.

Interested parties must submit proposals for modification prior to a scheduled meeting, within a certain date and in accordance with a required format. Meetings are held in public, in March and September, and webcasts are available. A summary is posted a few weeks after the meeting.


The next meeting of the ICD-10-CM C & M Committee is March 18-19, 2015. The deadline for new proposals for the March meeting has already been reached (January 16, 2015).

The next meeting after the March meeting will take place on September 22-23, 2015.

A Tentative Agenda is posted around three weeks in advance of the meeting but this is often sketchy.

The full Agenda (referred to as the "Topic Packet" or "Proposals" document) isn't posted until the day before Day One of the meeting.

Day One is usually devoted to Procedure code proposals, though some Diagnosis code proposals may be reached on the first day, depending on how many items the Agenda contains.

Most of the Diagnosis coding proposals are presented on Day Two.

Members of the public requesting that topics be discussed at the September 22–23, 2015 Coordination and Maintenance Committee meeting must have requests submitted to CMS for Procedures and NCHS for Diagnoses by July 17 and their proposals must be set out according to the required format.

Proposals for a new code should include:
  • Description of the code(s)/change(s) being requested
  • Rationale for why the new code/change is needed (including clinical relevancy)
  • Supporting clinical references and literature should also be submitted.
Proposals should be consistent with the structure and conventions of the classification.

For proposal samples, see proposal documents from previous meetings in Summary and Proposals.


Sometimes proposers will present their proposal, in person, at the meeting, and respond to any questions, comments or queries from the floor or from meeting chairs or other officials.

Sometimes proposals will be read out by a meeting official (CMS's Beth Fisher, CDC's Donna Pickett et al) on behalf of a requestor.


If at some point, IOM, NCHS, CDC or another body proposes the inclusion of SEID (or any other term) within ICD-10-CM, the public C & M Committee process is the procedure through which this would be done.

Comments, questions and queries can be made at the meeting by attendees and meeting officials, but there is a formal public comment period. The length of the public comment period varies from between just under a month to a couple of months.

For the September 22-23, 2015 meeting, the public comment periods are:

October 16, 2015: Deadline for receipt of public comments on proposed code revisions discussed at the September 22-23, 2015 ICD-10 Coordination and Maintenance Committee meetings for implementation on April 1, 2016.

November 13, 2015: Deadline for receipt of public comments on proposed code revisions discussed at the September 22-23, 2015 ICD-10 Coordination and Maintenance Committee meetings for implementation on October 1, 2016.

The Proposals document for the September 2014 meeting contains the ICD-10-CM Timeline on Pages 2-6:

http://www.cdc.gov/nchs/data/icd/Topic_Packet_09_23_2012.pdf

This document also gives a feel of just how many proposals for modifications are submitted via these update and revision meetings and the format in which they are presented.
 
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Scarecrow

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I've just gave it a test run on a complete stranger. Electrician is in my building. I crawled to the door to deal with it.

He's horrified because i'm on the floor etc.

He asks whats wrong with me and i reply,

'I have SEID.'
Greeted with silence.

'My illness is SEID.'
Also greeted with silence.

He thought i had a problem with speech and finishing sentences. Not joking.

He says, 'you're illness is said to be what?'

If thats the future. I'm most definitely sticking with ME.
:rofl:
Poor bloke! You can't blame him for not having a clue. But let's just hold that thought and rewind a bit. What do you think the reaction would have been if you'd said you had Systemic Exertion Intolerance?
 
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Hello this is my first post. 19 years with ME. Longtime lurker. Thank you to everybody who uses up their energy to post their thoughts and links etc - it is a lifeline for those of us who can't often string a sentence together.

I only managed to read a little of the first part of the report but it said something about they had to decide if it needed a new name. Does anybody know how that became giving it a new name? Maybe it is explained in the main body of the report. Or perhaps they just got carried away with trying to make a difference . . . they do seem to have got the severity of the illness.

I initially focussed on the 'disease' part and thought it was a good step forward but when I mentioned it to my husband he snorted and said "Oh great! Exertion Intolerance. Sounds like laziness disease." And he's right of course it is the perfect way to jokily describe somebody very lazy. Never mind that 'systemic' will get dropped in regular speech and 'disease' just makes the joke more funny.

it has taken me so long to write this that i'm sure everything i've said will have been said better by others but i'm posting it anyway. There are pages more post ssince I started this message and i can't read them all before posting.
 

Marco

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As per my earlier post 'systemic' in this context is meaningless and could be dropped with no loss of meaning.

Giving us Exertion Intolerance Disease.

There is no scientific justification for the use of disease instead of syndrome so syndrome is more appropriate until one or more disease processes are identified.

Exertion Intolerance Syndrome

'Intolerance' is imprecise and can mean anything from inability to unwillingness. In the lack of any precision and being open to interpretation we might as well just drop it.

Exertion Syndrome

As mentioned above exertion is often conflated with effort.

Can you see where this is going yet? ;)

http://en.wikipedia.org/wiki/Da_Costa's_syndrome
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Well, I disagree with the WHO! Eponyms can be much shorter, can encompass a huge range of symptoms and characteristics for a complex illness, and don't have to be translated. Easy!
Another reason why eponyms are now discouraged within classification and clinical terminology systems is because the same eponym may represent more than one medical procedure, or be in use in association with more than one disease or disorder and potentially be confused with other disorders that use a similar name, for example, there is

Ramsay Hunt Syndrome

(a neurological disorder characterized by paralysis of the facial nerve, also used in association with two additional neurological disorders)

Start writing Ramsay Disease into SNOMED CT search function and before you have completed the string you'll be offered

http://browser.ihtsdotools.org/

Ramsay sedation scale
Ramsay Hunt Syndrome

Search for "Ramsay Disease" in Google and you'll be offered thousands of links for

Ramsay Hunt Syndrome
 
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