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

[Hell...Hath...No...Fury..]

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?

I tried to but i honestly couldnt remember the words lol

 

[zzz]

Since we're throwing out some other names, how about this:

We want to convince people of the seriousness of the disease right off. So why not start with the word "Acquired"? The fact that this disease must not be congenital is already a requirement of several of the definitions. This gives us the same first word as AIDS, which is certainly taken seriously.

Putting "exertion" in the name does seem to have its benefits, although it would seem to be good to leave out the "intolerance" part for reasons already cited. So we'll use "exertion", or more specifically in this case, "exertional".

Now let's get to the heart of what this is. It's a neuro endocrine immune disorder (or disease), is it not? So put together, that makes Acquired Exertional Neuro Endocrine Immune Disorder (or Disease).

And now we've got something that's both quite descriptive and succinct: AENEID. And not only that, it's got literary class.

 

[Forbin]

Back in 2010, there was a thread concerning coming up with a new term for "PEM" which had some suggestions related to this discussion.

Thread:
The term "Post Exertion Malaise" is also insulting
http://forums.phoenixrising.me/inde...post-exertion-malaise-is-also-insulting.3952/

 

[justy]

Acquired Exertional Neuro Immune Disease I quite like!

 

[Nielk]

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.

Welcome Moosie to the forum!

It was part of the charge by HHS to the IOM panel to see if there is a need for a new name and to recommend one.

• recommend whether new terminology for ME/CFS should be adopted;

 

[MeSci]

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.

Yes - pronunciation is a major problem with the new name. If I am forced to use it, I am going to spell it out rather than treat it as an acronym. It's only one letter more than CFS, so won't be too hard. People talk about PTSD and ADHD so why not S-E-I-D?

Hope you got your electrics fixed!

 

[MeSci]

Acquired Exertional Neuro Immune Disease I quite like!

If we could think of an 'E' word to go after 'Neuro' it would be 'AENEID'! We can be heroes...

 

[MeSci]

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

I think 'Systemic' is fine, and necessary.

Definitions here:

• pertaining to or affecting the body as a whole.
• Relating to or affecting a particular body system, especially the nervous system.
• pertaining to the whole body rather than to a localized area or regional part of the body.

etc.

 

[MeSci]

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)

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

I don't think those are good reasons to dismiss Ramsay('s) disease. I know about Ramsay Hunt Syndrome as I have had a facial paralysis since the age of 5. I don't think it is sufficiently similar verbally to Ramsay('s) disease for the average person to confuse them. If this is considered to be the case, another word could be included, such as 'Ramsay's encephalopathy'. Maybe if someone could provide a link to Ramsay's original description of the disease we could use something that was his particular focus.

Obviously you won't be getting auto-completion for Ramsay's disease yet as no one has made it an official term yet.

 

[MeSci]

And now we've got something that's both quite descriptive and succinct: AENEID. And not only that, it's got literary class.

You beat me to it!

I still can't pronounce it though. Ee-nee-id?

 

[Hell...Hath...No...Fury..]

It looks like, 'I need,' to me. So pretty apt for many of us Since sometimes thats the only words spoken.

 

[Marco]

I think 'Systemic' is fine, and necessary.

Definitions here:

• pertaining to or affecting the body as a whole.
• Relating to or affecting a particular body system, especially the nervous system.
• pertaining to the whole body rather than to a localized area or regional part of the body.

etc.

My point is what type of exertion intolerance wouldn't be systemic apart from discrete problems such as repetitive stress injury or perhaps mental fatigue. In which case you'd just call them what they are.

 

[Sidereal]

Acquired Exertional Neuro Immune Disease I quite like!

Good name! I also like Ramsay's disease or myalgic encephalopathy if we wanted to keep the historical ME acronym (although it is tainted).

 

[MeSci]

My point is what type of exertion intolerance wouldn't be systemic apart from discrete problems such as repetitive stress injury or perhaps mental fatigue. In which case you'd just call them what they are.

I wouldn't have thought that all - maybe most - types of exertion intolerance caused systemic damage like blood volume depletion, immune changes, insomnia/neurological changes, effects on cognition, effects on heart rate, generalised weakness, swollen and tender lymph nodes, effects on gut function, etc., as many/most of us experience with PEM.

 

[MeSci]

Good name! I also like Ramsay's disease or myalgic encephalopathy if we wanted to keep the historical ME acronym (although it is tainted).

In what way is it tainted?

 

[Sidereal]

In what way is it tainted?

There has been an organised campaign since the 1980s by the Wessely school to "educate" doctors and the public that ME is a fake condition.

 

[Sidereal]

In the UK ALS is usually called Motor Neuron(e) Disease and hardly anyone has heard of Lou Gehrig.

Colloquially ALS and motor neurone disease are used interchangeably but they're not the same thing. ALS is one type of MND.

 

[snowathlete]

Wouldn't dysfunction be better than intolerance?

Yes I think it is better, but dysfunction also has negative conotations, and is often used in mental health speak.

 

[RYO]

I read some of the blog entries on NY Times website re: Chronic Fatigue Syndrome Gets a New Name. Changing the name certainly doesn't change the lack of knowledge in the general public or the medical community.

On the positive, I am glad CFS/ME is getting some press and highlighting the few physicians out there that validate and treat this disease. I hope it leads to more funding and research. The names will eventually change when the science catches up. Who knows, we may end up 5 or 6 names that describe discrete subpopulations within our waste basket umbrella.

I love the post - SEID backwards DIES...gut buster!

 

[Dolphin]

Yes - pronunciation is a major problem with the new name. If I am forced to use it, I am going to spell it out rather than treat it as an acronym. It's only one letter more than CFS, so won't be too hard. People talk about PTSD and ADHD so why not S-E-I-D?

Hope you got your electrics fixed!

Another one spelt out is HIV.