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

[cfsStevew]

I think the proposed name is terrible and sets us up for more derision. I thought I would never in my life say this: but I think I prefer Chronic Fatigue Syndrome to Systemic Exertion Intolerance Disease. That just sounds unbelievable to me and, frankly, I am embarrassed to say that to my family, friends, and doctors. We just substituted one symptom focus for another when I believe the focus should be on neuro-endocrine-immune dysfunction. There is nothing wrong with the disease's original name, myalgic encephalomyelitis. If they didn't want to go with the "it is" part due to insufficient lack of research on brain and spinal cord inflammation, then they certainly could have gone with myalgic encephalopathy. That is so much better. I could live with that, and I would certainly have welcomed it. Right now, I am just cringing.

I totally agree. I would not use this term myself. I stick with ME. There is evidence of neuroinflammation now. Why dont they replicate the study and forgo renaming the illness until they actually put some real money into research and find out!

 

[MeSci]

I'm happy for us all to continue to work under one umbrella, but we can't do that to the point that we ignore that there are very distinct diseases or at the least subgroups of disease present. Pain is a MAJOR hallmark for so many people, and those people deserve to have that symptom and whatever messed up pathology is behind it recognized, because it is one of the most debilitating parts of their daily experience, and a major reason their sleep is unrefreshing, they can't move anywhere or think clearly, etc. There is more going on under the surface than just pain of course, but my point is we can't just pretend it is not significant that a very clear group suffers greatly with this symptom - and I suspect the population of diagnosed people in the US have a far higher percentage of pain than in the informal poll cited here, which is a website with a lot of self-diagnosed people as well as a large international presence. Fibromyalgia for instance is often noted as a major co-morbidity of ME/CFS in the US, with some 50% of patients having that additional diagnosis.

I don't think that anyone denies that pain is a major symptom for many, or that many people would deny that ME (and I am going to keep calling it that for now) is probably a collection of illnesses. There are two major threads on this latter topic - here and here. There is a Catch-22 problem in that we need good diagnostic criteria in order to choose subjects to test for biomarkers so that we can subgroup them. But how are we going to get good diagnostic criteria without first doing some research? On whom?

If we use the CCC criteria - perhaps the best - maybe that would be the best way to start.

But I don't think that pain is an essential requirement under any of the current diagnostic criteria (someone will hopefully correct me if I am wrong).

By the way - as others have said here and elsewhere, SEID is really fundamentally incorrect. Exertion intolerance is definitely not specific to ME, whereas PEM is much more diagnostically useful, although it's not certain to be completely exclusive to ME.

On a good day, and indeed the day after, I might appear to be completely tolerant of exercise, able to exert myself significantly on the first day without apparent ill effects, and feel fine the next day, but the day after that I will feel like sh*t, and ditto for several days after that. PEM. QED.

 

[minkeygirl]

Just saw this in facebook. Lol

https://www.facebook.com/groups/MEAlliance/permalink/10153014836108257/

 

[Scarecrow]

@Simon - you have exercise instead of exertion in your post. This I think is an important point - many people will mistake exertion (which can include physical and mental exertion and perhaps even the exertion of merely being alive such as eating, breathing and speaking) with exercise. What about the neurological and immune aspects - these are the most abvious parts of my illness.

I don't think Simon will be the last person to make that mistake.

http://www.meassociation.org.uk/201...ical-adviser-me-association-11-february-2015/
Mea culpa - my first reference to SEID should read exertion not exercise.
I'm afraid I have exercise embedded on my brain at the moment after all the work we have been doing re graded exercise and the latest PACE trial paper!
We will correct this tomorrow (UK) morning

This is going to run and run (no pun intended).

 

[Sasha]

Just saw this in facebook. Lol

https://www.facebook.com/groups/MEAlliance/permalink/10153014836108257/

View attachment 9953

Catastrophe averted!

 

[Gingergrrl]

@minkeygirl When I first read "Post exertional neuro immune syndrome" I thought it was brilliant... before I scrolled further and saw what the acronym spelled out!

Thanks for posting that and it made me laugh!

 

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

I'm sorry if its already mentioned, too ill to read all 7 pages on here and just heard about this but at the start, the thread mentions the name is proposed not definite? Or have things changed since the thread was started?

Just wondering why SEID is already mentioned in wikipedia as another name for Chronic Fatigue Syndrome? If its not definite yet?

As wiki says its another name for CFS, does that mean ME still stands? Seeing as ME didn't get a mention in the description of SEID at all

At first glance it looked like it was replacing the CFS part of ME/CFS rather than the whole thing.

Head hurts just trying to remember that name

I've been dead for a few days, and it seems ive reincarnated into a new illness upon returning back to 'life'

 

[Gingergrrl]

I've been dead for a few days, and it seems ive reincarnated into a new illness upon returning back to 'life'

I guess we've all been reincarnated into a new illness according to the IOM!

 

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

So its official? Not capable of reading the report yet

 

[Sean]

There is a Catch-22 problem in that we need good diagnostic criteria in order to choose subjects to test for biomarkers so that we can subgroup them. But how are we going to get good diagnostic criteria without first doing some research? On whom?

Exactly. Round and round we go...

 

[CBS]

Just saw this in facebook. Lol

https://www.facebook.com/groups/MEAlliance/permalink/10153014836108257/

View attachment 9953

How could anyone not love this??? I'm taking it to my next doctors visit.

 

[CFS_for_19_years]

I first heard about the proposed name change on the national TV broadcast. I had to immediately write down what the acronym SEID stood for, because I knew I would forget what it stood for. I keep thinking it stands for Severe Exhaustion Intolerance Disease, not Systemic Exertion Intolerance Disease. I would have a hard time remembering what SEID stood for if I had to explain it in person to my doctor.

I'd be like......"give me a minute, it's coming back to me now, severe, no systemic, exhaustion, no, make that exertion, intolerance disease."

Good grief, this is one silly name, although the one advantage I see is that it does emphasize our dismal reaction to any type of exertion. It could get the conversation focusing on PEM, something I think most doctors can't wrap their heads around. Most doctors I've seen give me the attitude, "What, you can't even walk around the block - are you nuts, just lazy or both?"

 

[snowathlete]

I've been thinking a lot about this today, and not really reading much because I didn't want to be swayed by what other people think too much.

I actually think the name is pretty accurate when it comes to PEM. The problem, for me, is that I am diseased even if I do nothing and am not put under exertion. So although it is accurate and may even be specific to the disease, it doesn't do enough to sum up the disease, to get across what I am going through...though the word Systemic at the front is helpful.

All things considered though I've decided the name is good enough. It's a decent enough improvement. It's progress. I do want much more than a new name though, so I really hope this newly labeled disease now gets proper biomedical funding, because that is the far more important issue, frankly.

 

[acouchy]

I'm sorry if its already mentioned, too ill to read all 7 pages on here and just heard about this but at the start, the thread mentions the name is proposed not definite? Or have things changed since the thread was started?

Just wondering why SEID is already mentioned in wikipedia as another name for Chronic Fatigue Syndrome? If its not definite yet?

As wiki says its another name for CFS, does that mean ME still stands? Seeing as ME didn't get a mention in the description of SEID at all

At first glance it looked like it was replacing the CFS part of ME/CFS rather than the whole thing.

Head hurts just trying to remember that name

I've been dead for a few days, and it seems ive reincarnated into a new illness upon returning back to 'life'

Don't take anything you read on Wikipedia too seriously. It does not mean anything and is only one persons interpretation of the latest news.

From Wikipedia... "Wikipedia is written collaboratively by largely anonymous volunteers who write without pay. Anyone with Internet access can write and make changes to Wikipedia articles, except in limited cases where editing is restricted to prevent disruption or vandalism. Users can contribute anonymously, under a pseudonym, or, if they choose to, with their real identity."

 

[Gingergrrl]

So its official? Not capable of reading the report yet

I have not read the report either and my understanding is that it is official but may change again in a few years? Is this correct? Maybe someone else can answer who knows more about this.

 

[acouchy]

I could be wrong but I read it as they have put forth this information into the world and they have no control or say in how it is acted upon. In the report the name change is recommendation 4. I have no idea how it becomes official... government approval?

 

[alex3619]

I don't think Simon will be the last person to make that mistake.

Given my brain I am expecting one day to wake up, and after weeks or months of using exertion I will write exercise instead. Thats ME. Oh, sorry, thats SEID. Or is it ME?

 

[CBS]

Just saw this in facebook. Lol

https://www.facebook.com/groups/MEAlliance/permalink/10153014836108257/

View attachment 9953

Printed this up and tacked it on the frig.

My wife got a huge laugh and now keeps asking how my P.E.N.I.S. was today!

 

[Purple]

Is hard to pronounce, and what is the translation to other languages. If I tell my mom in my native language it does not even make any sense. Sigh.

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...

It might be true that the elements of SEID are accurate, in a while it is still a demeaning name.

They state that this is a very serious real disease yet they produce this demeaning name.

Agree.

 

[valentinelynx]

If we're going to stick with naming it for symptoms, how about:

I Feel Terrible Disease (IFTD)

or

Never-Ending Flu Disease (NEFD)?

On some days, I might also favor

Leave Me the F Alone Until You've Found a Cure, I'm Too Sick for this Endless BS Disease (LMTFAUYFACITSFTEBSD)...

or better yet

Really Sick Disease (RSD) - simple, and to the point.

I've been tempted to call it "FLIFTDD": "feel-like-I'm-fixin'-to-die-disease" (apologies or whatever is due to Country Joe McDonald)