POLL OPEN! Terminology, Definitions, and Criteria

[WillowJ]

I would like to see PEM disappear as we don't have malaise and exhaustion doesn't really describe it well either.

Maybe I read too much Control of Communicable Diseases in microbiology class, but I have malaise with mine:

1 : an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness (Mirriam-Webster)

To me, malaise is that feeling you get that indicates "I'm sick" and accompanies a cold, the flu, Rocky Mountain spotted fever, bubonic plague, M. pneumonia, etc.

 

[WillowJ]

You can just check Disagree to Item 2.

To do that, we have to figure out the rest of the poll.... not so simple. Another time perhaps.

 

[Scarecrow]

@Gingergrrl43

CFS is the preferred term of doctors in the UK, too. It's the patients that tend to use ME.

Do you ever feel a bit guilty saying on this forum that you are fatigued? Fancy starting up a quiet FA corner (Fatigued Anonymous).

On the other hand, there's a lot to be said for minkeygirl's post quoting Laura Hillenbrand: "This illness is to fatigue what a nuclear bomb is to a match. It's an absurd mischaracterization."

 

[Gingergrrl]

@Gingergrrl43

CFS is the preferred term of doctors in the UK, too. It's the patients that tend to use ME.

Do you ever feel a bit guilty saying on this forum that you are fatigued? Fancy starting up a quiet FA corner (Fatigued Anonymous).

On the other hand, there's a lot to be said for minkeygirl's post quoting Laura Hillenbrand: "This illness is to fatigue what a nuclear bomb is to a match. It's an absurd mischaracterization."

@Scarecrow I don't feel guilty using the word fatigue but I just feel it is not a strong enough word. It's like saying you had a paper cut when you really had an arm amputation.

 

[Mij]

Maybe I read too much Control of Communicable Diseases in microbiology class, but I have malaise with mine:

1 : an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness (Mirriam-Webster)

To me, malaise is that feeling you get that indicates "I'm sick" and accompanies a cold, the flu, Rocky Mountain spotted fever, bubonic plague, M. pneumonia, etc.

I understand what you are saying but the definition you posted seems incorrect? I am also French speaking and when I use the word malaise it describes a feeling of "discomfort", like watching someone on t.v acting inappropriately.

 

[WillowJ]

I understand what you are saying but the definition you posted seems incorrect? I am also French speaking and when I use the word malaise it describes a feeling of "discomfort", like watching someone on t.v acting inappropriately.

That's how it's used in the infectious disease field. I copied it from a dictionary, and that's way I'm used to understanding this term from microbiology class. I don't know how it might be used in other fields. I am unfamiliar with the meaning you describe (although I see it in the #2 spot in the same dictionary--but this doesn't really seem to have a medical application).

I would imagine that most medical doctors would think about it the way that I do, at least US doctors. They probably took microbiology and read Control of Communicable Diseases at some point(s) in their training, too.

 

[WillowJ]

Example entry: Rocky Mountain spotted fever:

http://www.unboundmedicine.com/ccdm...iseases/460223/0/Rocky_Mountain_Spotted_Fever

This prototypic disease of the spotted fever group of Rickettsiae is characterized by the sudden onset of moderate to high fever, which ordinarily persists for 2–3 weeks in untreated cases; significant malaise; deep muscle pain; severe headache; chills; and conjunctival injection.

A maculopapular rash generally appears on the extremities on the 3rd to 5th day; this soon includes the palms and soles, and spreads rapidly to the body trunk. A petechial exanthem occurs in 40% to 60% of patients, generally on or after the 6th day.

The case-fatality rate ranges between 20% and 80% in different regions in the absence of specific treatment; with prompt recognition and treatment, death is uncommon, yet 3%–5% of cases reported in the USA during recent years have been fatal....

M. Pneumonia:

Onset is gradual with headache, malaise, cough (often paroxysmal), sore throat and sometimes chest discomfort that may be pleuritic. Sputum, scant at first, may increase later.

Hepatitis A:

Onset of illness in adults in non-endemic areas is usually abrupt, with fever, malaise, anorexia, nausea and abdominal discomfort, followed within a few days by jaundice.

"Anorexia" means not feeling hungry, by the way, and usually indicates a medical problem.

 

[WillowJ]

The problem I see with "malaise" is not that it is incorrect, but that there is so much more going on in addition to malaise. The exacerbation of signs and symptoms involves so many items.

It is again an oversimplification, a problem we run into constantly.

 

[Mij]

I understand how it's applied as a medical term in the English language, but for me I don't describe the way I feel as malaise in those terms either. Would you describe yourself feeling malaise to healthy people though? I don't think they would consider you disabled.

 

[alex3619]

Thank you for this! He states at the very outset that it is the same disease with varying degrees of severity! Watching the rest of the video...

I think they have moved to Canadian Consensus Criteria. It is unclear what they mean by "same disease". Early research was probably Fukuda. Now its mostly CCC. If they are saying most with CCC have the same disease with different severity that would be expected. If they are saying most with Fukuda have the same disease with different severity that would be surprising.

 

[alex3619]

The term "malaise" has some of the same issues as fatigue. There are technical definitions, and commonly used definitions, and then there is spin by some who deliberately confuse the meanings.

My own position is we need to keep CFS for historical reasons, use ME for diagnostic reasons (where a diagnosis of ME excludes a diagnosis of CFS) and abandon both names when we have a good understanding of causes/s, including a definitive test. A new name is highly desirable, ME is tainted almost as badly as CFS.

 

[SOC]

Abnormal Prolonged Postexertional Exhaustion And Low Stamina

Would not be an accurate description for most ME patients.

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

That name completely misses these two critical points in Criteria A.

This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.

[my bolding]

2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.

Symptom exacerbation with prominent neuroimmune symptoms is highly significant for most patients and distinguishes PEM/PENE from things like exercise intolerance. It's not just about fatigue/exhaustion and low stamina.

 

[SDSue]

I understand how it's applied as a medical term in the English language, but for me I don't describe the way I feel as malaise in those terms either. Would you describe yourself feeling malaise to healthy people though? I don't think they would consider you disabled.

I don't think a healthy person will EVER comprehend what this illness entails. There are no words that adequately sum it up in a nice tidy package. That's why I'm with @alex3619 - when we have an understanding of the disease process, let's name it (and respect it) accordingly.

As for the "PEM", how about we call it PEH? Post-exertional Hell.

 

[Gingergrrl]

The term "malaise" has some of the same issues as fatigue. There are technical definitions, and commonly used definitions, and then there is spin by some who deliberately confuse the meanings.

My own position is we need to keep CFS for historical reasons, use ME for diagnostic reasons (where a diagnosis of ME excludes a diagnosis of CFS) and abandon both names when we have a good understanding of causes/s, including a definitive test. A new name is highly desirable, ME is tainted almost as badly as CFS.

@alex3619 I really do not like the term "malaise" either b/c I feel like it minimizes our illness even more than the word "fatigue." Even though I may not be medically correct, when I think of malaise, I think of someone who was out in the sun too long and felt a little uncomfortable but once they got home, they were fine. We need to come up with a better vocabulary for this whole thing.

Although I agree with Alex that historically, we can't just change the name b/c no one will have any clue what we are talking about (not that they have a clue now... ) One of my former co-workers (who I've known for ten yrs) texted me today to see how I was doing and I did use the word CFS but explained it as a condition in which my mitochondria has been damaged and my body is not able to create enough energy for basic autonomic and cardiac functions. She immediately understood how ill I was and reacted appropriately. I wish there could be a description like that.

 

[Little Bluestem]

Mark VanNess uses the term post exertional amplification of symptoms instead of PEM. I would like to see PEM disappear as we don't have malaise and exhaustion doesn't really describe it well either.

Someone, of course I do not remember who , recently used the term post exertional debility. I like that the best of anything I've seen so far.

 

[soofke]

for me it's right in the middle of flu and fatigue/exhaustion, so I can never spot on tell what I'm feeling, perhaps malaise is best but over here that's more of a doctor's term, and would never say I'm too malaised to come to your b-day/hang out/do whatever
or for that matter (post) exertional debilitated

@alex3619One of my former co-workers (who I've known for ten yrs) texted me today to see how I was doing and I did use the word CFS but explained it as a condition in which my mitochondria has been damaged and my body is not able to create enough energy for basic autonomic and cardiac functions. She immediately understood how ill I was and reacted appropriately. I wish there could be a description like that.

and don't you get a bit....whatstheword that after your perhaps perfect explanation she goes to her computer, googles cfs and reads "all in the mind"?

 

[SDSue]

and don't you get a bit....whatstheword that after your perhaps perfect explanation she goes to her computer, googles cfs and reads "all in the mind"?

This is exactly why I rarely use the term CFS. Lay people don't comprehend the term "syndrome", and it would appear that the Google universe doesn't either.

I use terms like "mitochondrial failure", "dysautonomia", "daily migraines", etc.

… and I try really hard to remember that just because someone asks doesn't mean they deserve an answer. Because I've fought so long and hard for diagnosis and treatment, I feel the need to explain and justify. Sometimes, fewer words have a lot more power - after all, don't most liars concoct rambling elaborate stories?

@Dr.Patient I, too, am having trouble with the the poll. Because I don't understand it's purpose or goal, my motivation to participate is low. Also, the format requires working memory, of which I have nil. Unfortunately, both of those realities of my ME/CFS severely limit me with this type of task. I do look forward to a different version, however!

 

[Cheshire]

I understand what you are saying but the definition you posted seems incorrect? I am also French speaking and when I use the word malaise it describes a feeling of "discomfort", like watching someone on t.v acting inappropriately.

Malaise in french also means fainting, or being on the merge of faiting.

 

[Mij]

@Cheshire malaise has several meanings in French including physical and emotional discomfort/stress. I was being facetious when I responded to WillowTree. The term malaise when used in English minimizes this illness. If people want to use it to describe how they feel then it's their choice. I don't like it used to describe PEM.

Personally for me, I don't use this term for feeling faint or fainting.

 

[Dr.Patient]

Do we call it Disabling Weakness Syndrome then?