POLL OPEN! Terminology, Definitions, and Criteria

[minkeygirl]

@Scarecrow. Can't do it. Even if I did print it, stuff like this doesn't stick in brain. I could read it 10 times and I won't get it and I won't remember it. I might as well be reading Martian. Trying is a waste of my energy. There are others here who can't understand this type of thing either.

 

[Dr.Patient]

Personal opinion, I think APPEALS is a bad idea. When spelled out that is a mouthful and it sounds really corny and non descriptive.

Why would you not want it to sound as serious as M.E.?

I do want it to sound as serious as the illness is, but also something that would be as accurate as possible.

 

[TigerLilea]

I do want it to sound as serious as the illness is, but also something that would be as accurate as possible.

Personally I think it is too soon to be worrying about a new name. Until we truly understand what this illness is, how can we possibly name it.

 

[Sushi]

I do want it to sound as serious as the illness is, but also something that would be as accurate as possible.

Abnormal Prolonged Postexertional Exhaustion And Low Stamina

Would not be an accurate description for most ME patients. I agree with @TigerLilea that this illness is better understood, another name change would just be more confusing.

Sushi

 

[Dr.Patient]

Would not be an accurate description for most ME patients.

Sushi

But that is criteria A, the compulsory criteria of ICC.

 

[Dr.Patient]

And the one thing that differentiates this illness from all others! (Criteria A)

 

[Sushi]

But that is criteria A, the compulsory criteria of ICC.

It is only one of many criteria and doesn't speak to causes,

Sushi

 

[Scarecrow]

But that is criteria A, the compulsory criteria of ICC.

I'm not so sure if it is exclusively.

A1. Agree
A2. Immunologoical
A3. Immunological / neurological?
A4. Could be anything really (remanufacturing ATP (hence agree) / immunological abnormalities subsiding)
A5. Agree

[Edit] p.s. the numbering used refers to ICC criteria not to the five poll items.

 

[Mij]

@Mij Not just amplification, but remember how exercise 'brought on' our relapses after we exercised when we felt we were a 100%?

I feel that just going back to work whether I exercised or not would have eventually brought on a relapse. In other words, exercise causes the relapses to come back faster and the more you do the more irreversible damage it causes over time.

Since you have been ill a much shorter time than me your chances of remission or recovery is higher.

 

[Dr.Patient]

I'm not so sure if it is exclusively.

A1. Agree
A2. Immunologoical
A3. Immunological / neurological?
A4. Could be anything really (remanufacturing ATP (hence agree) / immunological abnormalities subsiding)
A5. Agree

Can you please do the poll, you don't have to do all 5 items, thanks.

 

[Mij]

Perhaps incapacitation a better word than fatigue?

I prefer amplification of symptoms because it includes an underlying relapsing pathology. Hmm . . . not sure about incapacitation, but yeah get rid of the word fatigue for sure!

 

[Scarecrow]

Can you please do the poll, you don't have to do all 5 items, thanks.

I already did. That last list was quoting the ICC numbering and was in response to you stating that 'APPEALS' describes criteria A. I think criteria A is more complex. My fault for not making it clearer.

 

[Dr.Patient]

I see your point with amplification! Perhaps people can suggest an accurate word for this damned misnomer fatigue?

 

[Soundthealarm21]

I think we can add on to CFS and make it better!

Chronic Fatiguing, painful, dreadful, I can't stand up for long periods of time, I feel like crap, my hormones are in the tank, my immune system sucks, why won't this just end, something wrong with ATP production, there are viruses swimming through me unregulated, my body won't kill mold, I can't concentrate long enough to finish typing this out Syndrome

There we go!

 

[Gingergrrl]

@minkeygirl Don't worry, you are not alone and the poll is too confusing to me in the current format. I am not sure what the A,B,C,D criteria link to and, no offense to @Dr.Patient, but I hate the name Appeals. It doesn't mean anything and no one will remember it. I want a name that stresses the severity of the illness and for me the level of fatigue is often comparable to when I had mono. When I explain it that way to anyone who has actually had a severe case of mono, they immediately understand. But I know this does not help with finding the right title for the illness.

 

[Dr.Patient]

I already did. That last list was quoting the ICC numbering and was in response to you stating that 'APPEALS' describes criteria A. I think criteria A is more complex. My fault for not making it clearer.

Sorry @Scarecrow , my fault...

 

[Scarecrow]

I don't think that fatigue is a misnomer. It's unfortunately vague, though. Fatigue is not an inherently dirty word but Chronic Fatigue Syndrome is a very dirty term.

 

[Dr.Patient]

@minkeygirl Don't worry, you are not alone and the poll is too confusing to me in the current format. I am not sure what the A,B,C,D criteria link to and, no offense to @Dr.Patient, but I hate the name Appeals. It doesn't mean anything and no one will remember it. I want a name that stresses the severity of the illness and for me the level of fatigue is often comparable to when I had mono. When I explain it that way to anyone who has actually had a severe case of mono, they immediately understand. But I know this does not help with finding the right title for the illness.

I have added a link to the ICC criteria that show what the A,B,C,D are in the first post.

 

[Gingergrrl]

I don't think that fatigue is a misnomer. It's unfortunately vague, though. Fatigue is not an inherently dirty word but Chronic Fatigue Syndrome is a very dirty term.

@Scarecrow, I agree and do not want Fatigue removed as a criteria b/c it is at the core of the illness for me (general fatigue, muscle fatigue, cardiac fatigue, etc.) It is just the name of the diagnosis (in the US) that is horrific b/c people associate fatigue with someone who worked too hard or didn't get enough sleep. They do not understand it is a sickly fatigue in which you could drop a pen on the floor and not have the ability to pick it up or not be able to breath b/c you tried to stand up and brush your teeth.

 

[Tristen]

I call it "Post Exertional Exacerbation of ME" because that's exactly what it feels like. "Amplified", is basically the same......but "exacerbation" seems a bit more clinical. I don't get into measuring levels of fatigue/exhaustion, because they are far from being prominent symptoms for me....never have been. But for the extent that they do exist, yes that phrase by Dr Nancy was one of my earliest YESSSS, moments. Calling this fatigue is like calling an atomic blast a match.