• Phoenix Rising needs funds to operate: please consider donating to support PR

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

Senior Member
Messages
17,555
Likes
28,242
(I should probably have said this before now)
There are two aspects to a name:
(i) It is a definite part of the condition;
(ii) You want it so that people with other conditions wouldn't satisfy it.

I think the latter is a problem with names like "Neuro-immune disease". Ours is not the only neuro-immune condition.
 

amaru7

Senior Member
Messages
237
Likes
128
Honestly I couldn't care less what they call it, even if they changed it to chronic lazy ass syndrome, as long as they offer a cure for it.

Cfs me is just fine, most don't even know it exists or what it is and even the so called specialists, while trying their best, are not understanding how to Really cure it despite their claims on how successful they are with patients
 

Dolphin

Senior Member
Messages
17,555
Likes
28,242
From a yahoogroup post (not mine) in reply to a circular about a petition to reject SEID:

I think SEID is much better than CFS and you cant get a diagnosis of ME on the NHS.

The Wessely School are opposed to SEID as 'exertion intolerance' blows a whole in the theory that our symptoms are mainly caused by deconditioning.

I would be doing the Wessely School a favour if I signed this petition.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,056
Likes
6,062
Location
UK
Who cares what the WHO says.
Because if you want your medical term of choice (whatever that term might be) entered as the Title term within WHO's forthcoming ICD-11 and in the country specific "clinical modifications" that will be developed from the ICD-11 (which are obliged to adapt the core version to conform to WHO taxonomy conventions for ICD), then is it sensible to consider WHO and ICD Revision policies, since it is WHO/ICD Revision that approves which terms are entered into the classification as coded for ICD Title terms.

This applies also to the SNOMED CT clinical terminology system that is in use in many countries. ICD-11 will be integrable with SNOMED CT.

I do not consider it advantageous to lobby for the adoption of a new eponym based medical term that WHO/ICD Revision is likely to reject as the coded for term.

Also, any new term would need to be acceptable to and approved by NCHS/CDC if it is to be inserted into the forthcoming U.S. ICD-10-CM* as a billable code, either with a unique code created for it, or as an inclusion term to an existing coded term.

NCHS is obliged to modify the ICD-10-CM code set in accordance with WHO ICD taxonomy conventions.


Note also: ICD-11 has the capacity in its electronic version (but not its print versions) for lengthy lists of terms under "Synonyms."

So for some diseases, there will be the Title term (or concept term) that is coded for; then sometimes an Inclusion term is specified which is assigned to the same code. Then there may be a list of other terms under Synonyms which are not coded for. Then there may be a list of Index terms.

"Synonyms are alternative names for the same underlying concept, including common terms and medical jargon. Synonyms are not intended to be used interchangeably with the concept title, but help users to locate the proper code within the ICD. The concept title will have precedence over synonyms for international reporting." Source: ICD-11 Glossary of Terms

But the U.S. ICD-10-CM Tabular List tends to be restricted to the Title term (which is assigned the code) and one or more inclusion terms, which are listed beneath the coded term and assigned to the same code. Within ICD-10-CM, there are no lists of uncoded for Synonym terms within the Tabular List.

A Synonym term which was not specified as an inclusion term in the Tabular List would be placed (if approved for addition by NCHS) in the Index.

*The U.S. specific, ICD-10-CM, is scheduled for implementation on October 1, 2015. The ICD-10-CM code set is currently subject to partial code freeze. Partial code freeze scheduled to lift 12 months after ICD-10-CM implementation, on October 1, 2016, when regular update cycle will resume. http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm
 
Last edited:

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,056
Likes
6,062
Location
UK
Another reference to WHO's preference for avoiding eponyms (extract from ICD personnel discussions, via the ICD-11 Proposal Mechanism):

http://apps.who.int/classifications...lGroupId=a1c3a267-1180-4e95-9fc2-b9589c4ac495

"...Also consider changing the name [Charles Bonnet syndrome] to 'Visual release hallucinations' with 'Charles Bonnet syndrome' as a Synonym, given WHO's preference to avoid proper names. However, the Ophthalmology TAG will have a better idea of the frequency of use of these alternate terms in the field." On behalf of Mental Health TAG
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,125
Likes
13,051
Location
Cornwall, UK
But it won't be your position that decides on billable codes.
I don't even know what 'billable code' means.

I think we all know about our own powerlessness, but we can still express opinions. And sometimes when individuals get together they can overturn bureaucratic policies.

Not saying it's likely or will happen, just that bureaucratic organisations are set up and run by people, and can be changed by people. They are not an immutable force of nature.

I've been fighting large organisations for decades - and occasionally won! :D
 
Messages
2,239
Likes
16,216
Current votes- almost 650 so far - on the MEA website survey on SEID:

Vote via the home page on the MEA website: www.meassociaion.org.uk

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 (9%, 60 Votes)

    • Yes - but for ME only (4%, 24 Votes)

    • Yes - for CFS and ME (14%, 88 Votes)

    • Not sure (9%, 59 Votes)

    • No opinion (2%, 10 Votes)

    • No - do not like SEID (62%, 401 Votes)


      Total Voters: 642
 
Messages
5,898
Likes
12,682
Location
South Australia
Current votes- almost 650 so far - on the MEA website survey on SEID:

Vote via the home page on the MEA website: www.meassociaion.org.uk

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 (9%, 60 Votes)

      • Yes - but for ME only (4%, 24 Votes)

      • Yes - for CFS and ME (14%, 88 Votes)

      • Not sure (9%, 59 Votes)

      • No opinion (2%, 10 Votes)

      • No - do not like SEID (62%, 401 Votes)


        Total Voters: 642
I know @Dolphin and a few others are keen on SEID, but the above shows how unpopular it really is.
 

Dolphin

Senior Member
Messages
17,555
Likes
28,242
I know @Dolphin and a few others are keen on SEID
Yes I think the most likely outcome if it is not accepted is "chronic fatigue syndrome" will be the main name the medical profession uses for a decade or more into the future. We have seen all the rubbish definitions that have been associated with "chronic fatigue syndrome", how "chronic fatigue" and "chronic fatigue syndrome" has been blended together by some, etc. so I am not at all happy to be stuck with "chronic fatigue syndrome".
 

Butydoc

Senior Member
Messages
780
Likes
2,240
Yes I think the most likely outcome if it is not accepted is "chronic fatigue syndrome" will be the main name the medical profession uses for a decade or more into the future. We have seen all the rubbish definitions that have been associated with "chronic fatigue syndrome", how "chronic fatigue" and "chronic fatigue syndrome" has been blended together by some, etc. so I am not at all happy to be stuck with "chronic fatigue syndrome".
Hi Dolphin,

I tend to agree with your assessment. As clinical physician, i'm a bit baffled over all this angst over the proposed name change. Now when a doctor sees a patient, he/she will have a name associated with a disease that is not a syndrome and a relatively easy diagnostic criteria. Most physician have no clue what CFS represents. When I talk to other doctors and ask them what is CFS, they generally claim that it is a waste basket term that covers people who have some form of psychiatric illness. This debate reminds me of the republican party. You have the Tea Party faction and the moderate republicans who both want to beat the democrats. Both were unwilling to compromise and hence lost the election in 2012. I'm not sure that the patient population sees this controversy the same as physician who are called upon to treat it. The enemy of good is better.

Best,
Gary
 

Aurator

Senior Member
Messages
625
Likes
3,071
As clinical physician, i'm a bit baffled over all this angst over the proposed name change...When I talk to other doctors and ask them what is CFS, they generally claim that it is a waste basket term that covers people who have some form of psychiatric illness.
I suspect the angst, such as it is, is a rational response to the perception a good many patients undoubtedly have of a state of affairs you yourself have just vouched for: viz. that doctors generally claim that "CFS...is a waste basket term that covers people who have some form of psychiatric illness." It's perhaps a little too optimistic to expect that a name change to SEID and clearer diagnostic criteria will suddenly cause doctors on the one hand to view the disease entity significantly differently, and patients on the other to have more positive expectations of the way doctors will regard them or treat them.
 

Kati

Patient in training
Messages
5,497
Likes
19,632
I suspect the angst, such as it is, is a rational response to the perception a good many patients undoubtedly have of a state of affairs you yourself have just vouched for: viz. that doctors generally claim that "CFS...is a waste basket term that covers people who have some form of psychiatric illness." It's perhaps a little too optimistic to expect that a name change to SEID and clearer diagnostic criteria will suddenly cause doctors on the one hand to view the disease entity significantly differently, and patients on the other to have more positive expectations of the way doctors will regard them or treat them.
However SEID means we are progressing from a horrible name (CFS) to something not perfect but better, hopefully very temporary as science advances towards better understanding of the disease.
 

Butydoc

Senior Member
Messages
780
Likes
2,240
I suspect the angst, such as it is, is a rational response to the perception a good many patients undoubtedly have of a state of affairs you yourself have just vouched for: viz. that doctors generally claim that "CFS...is a waste basket term that covers people who have some form of psychiatric illness." It's perhaps a little too optimistic to expect that a name change to SEID and clearer diagnostic criteria will suddenly cause doctors on the one hand to view the disease entity significantly differently, and patients on the other to have more positive expectations of the way doctors will regard them or treat them.
Hi Aurator,

I'm afraid that i am one of those doctors who before I came down with ME/SEID considered people who came into my office with a diagnosis of CFS as psychiatrically impaired. My own younger brother came down with ME/SAID when he was twenty and I was a resident in surgery. Unfortunately because my brother was histrionic and my professors didn't believe ME/SEID existed, I didn't think he had a serious disease. I wish a name and a diagnostic criteria that now is being considered existed.

I suspect i'm not the lone physician who was ignorant about ME/SAID. At that time, the disease was called CFS and/or the Yuppie flu. I can't imagine that the name change will do anything other than help doctors take this disease seriously and actually spend some time learning about it. Most physician that I associate with research diseases that they see in their practices. I'm afraid the label "CSF" has hurt that process. Now I can be completely off in my assessment, but at least this one opinion from a clinical physician.

Best,
Gary
 

Kati

Patient in training
Messages
5,497
Likes
19,632
Hi Aurator,

I'm afraid that i am one of those doctors who before I came down with ME/SEID considered people who came into my office with a diagnosis of CFS as psychiatrically impaired. My own younger brother came down with ME/SAID when he was twenty and I was a resident in surgery. Unfortunately because my brother was histrionic and my professors didn't believe ME/SEID existed, I didn't think he had a serious disease. I wish a name and a diagnostic criteria that now is being considered existed.

I suspect i'm not the lone physician who was ignorant about ME/SAID. At that time, the disease was called CFS and/or the Yuppie flu. I can't imagine that the name change will do anything other than help doctors take this disease seriously and actually spend some time learning about it. Most physician that I associate with research diseases that they see in their practices. I'm afraid the label "CSF" has hurt that process. Now I can be completely off in my assessment, but at least this one opinion from a clinical physician.

Best,
Gary
From my many experiences as a patient, I can attest to what @Butydoc is saying. One emergency dr basically said aloud 'chronic fatigue syndrome', scratched his head and said must not be that bad!
 

Dolphin

Senior Member
Messages
17,555
Likes
28,242
Hi Aurator,

I'm afraid that i am one of those doctors who before I came down with ME/SEID considered people who came into my office with a diagnosis of CFS as psychiatrically impaired. My own younger brother came down with ME/SAID when he was twenty and I was a resident in surgery. Unfortunately because my brother was histrionic and my professors didn't believe ME/SEID existed, I didn't think he had a serious disease. I wish a name and a diagnostic criteria that now is being considered existed.

I suspect i'm not the lone physician who was ignorant about ME/SAID. At that time, the disease was called CFS and/or the Yuppie flu. I can't imagine that the name change will do anything other than help doctors take this disease seriously and actually spend some time learning about it. Most physician that I associate with research diseases that they see in their practices. I'm afraid the label "CSF" has hurt that process. Now I can be completely off in my assessment, but at least this one opinion from a clinical physician.

Best,
Gary
I think doctors are a group who are used to having to push through fatigue either from the long hours required to pass medical school and/or the long hours involved in working (perhaps particularly in the early years). So they can wonder why people don't simply put up with fatigue and push through it. So that's one reason why I think "Chronic Fatigue Syndrome" is a bad name.