POLL OPEN! Terminology, Definitions, and Criteria

[Sushi]

Do we call it Disabling Weakness Syndrome then?

The reality is that none of us, with all our intelligence and good intentions, is going to be able to change the name of this syndrome. ME/CFS doctors, researchers, and patients working extremely hard in advocacy, as well as very supportive journalists with high profiles (such as Llewellyn King) have been trying to get the name changed for a very long time.

The only thing that is going to get the name changed (in my opinion) is definitive research that reveals causes. There is very promising such research "in the wings." In the meantime, I think we will have to live with what we have got.

Sushi

 

[Gingergrrl]

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"?

@soofke First, I love the quote in your avatar and had not seen it before! As far as your question, I never feel obligated to use the word CFS with people and am very guarded with minimal disclosure (outside of this board of course.) In this case, the co-worker who asked me was someone I had worked with for over 10 yrs and who saw how sick I'd been the last few years especially since mono with all the cardiac issues (and she has been on multiple medical leaves herself) so she was not someone who would start googling or mis-judge me. But overall, I very much agree with your point and often use words like dysautonomia, cardiac issues, etc, instead of CFS.

 

[Dr.Patient]

So, who are these "CFS" people that "ME" people want to differentiate themselves from? @Sushi @SOC @Kina

 

[Sushi]

@soofke ...But overall, I very much agree with your point and often use words like dysautonomia, cardiac issues, etc, instead of CFS.

I find that Myalgic Encephalomyelitis just stops people in their tracks and shuts them up. While it sounds like something "terrible" they don't want to admit that they have no idea what it means. I don't tell this to many docs though, just friends.

Sushi

 

[Mij]

Outside of doctors and emergency rooms I just tell people I have a medical condition. If they ask questions I say it's neurological. Do they really want to know the details? probably not.

 

[SOC]

So, who are these "CFS" people that "ME" people want to differentiate themselves from? @Sushi @SOC @Kina

I wouldn't say the differentiation is between "CFS" and "ME" because in the US "CFS" is the only official diagnosis. I think the distinction most of us try to make is between the symptom "chronic fatigue" and the neuroimmune illness as defined by the CCC or ICC.

CFS definitions like the Oxford Definition and the CDC Empirical gather in many patients with the symptom "chronic fatigue" who do not meet the stricter criteria of the CCC (ME/CFS) or the ICC (ME).

 

[Dr.Patient]

I wouldn't say the differentiation is between "CFS" and "ME" because in the US "CFS" is the only official diagnosis. I think the distinction most of us try to make is between the symptom "chronic fatigue" and the neuroimmune illness as defined by the CCC or ICC.

CFS definitions like the Oxford Definition and the CDC Empirical gather in many patients with the symptom "chronic fatigue" who do not meet the stricter criteria of the CCC (ME/CFS) or the ICC (ME).

I guess the Oxford definition and the CDC Empirical are outdated now...

 

[SOC]

I guess the Oxford definition and the CDC Empirical are outdated now...

If only the relevant governmental agencies agreed with that thinking.

 

[beaker]

@minkeygirl, you really do have my sympathy. This is not a straightforward poll and it requires your working memory to be in good order but I think that it would be impossible for Dr.Patient to make it 'friendlier'.

If you don't mind me making a suggestion, you could try printing the third and fourth page of the document Dr.Patient linked to. It would make the mental gymnastics a little easier. I also had to make some notes to help out with my memory.

I'm w/ @minkeygirl . Printing out means staring at words on paper that are just as difficult. At least for me at this point.
I'm surprised I made it this far reading comments. To those who can join in Great. There are many things folks do, read, etc.. on the forum and off that I can't do. I let it go. Stuff I can do others can't. That's why we are here to have each others' backs.

I just added this to offer support to those who are overwhelmed at even the thought of reading it in any form.
IT's hard when you want to be a part of something and even if someone was here reading it to me right now I couldn't handle it. Something that requires coping skills. Which now that I think of it, are some of the best skills we can have w/ this plague.

Good night all. *see* you soon.

PS FWIW : do not like APPEAL at all. Do like that you are thinking about stuff.

 

[WillowJ]

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 try not to use too many medical /technical / high-level vocabulary terms in my everyday conversatins... but... this is me. Bona fide nerd. Bookish, and social skills not great.

However I think the point of defining terms in definition criteria is usually to reach doctors.
Edit: however I agree malaise, even the best medical meaning (and sorry if I put too many posts about this), is not enough by itself, to describe what we have. /edit

To healthy or mildly unhealthy people I have sometimes (when I was better than now) asked them to try and think of the worst flu they ever had.... add a bad migraine... insomnia for many weeks.... imagine they have just run a marathon (only no high from the exercise or from finish line, just the exhaustion and pain).... all at once. Yeah that's a little like what I feel. Every day. They were typically appropriately impressed.

Other times I say I have something that is a little like MS, only less well known. Or a cross between MS and Lupus. Or just leave it at 'disabled'.

Or I do the whole ME, neuro-immune, cheezy name CFS, not well diagnosed speech. Maybe adding that many diseases, recent example being MS, were once considered a form of hysteria (or whatever 'nicer' name they are using for that these days), and ours is kind of stuck there right now, but there's good research if you know where to look. If it's someone with patience, this can be well received. Some allied health professionals, even.

 

[WillowJ]

Do we call it Disabling Weakness Syndrome then?

No; most names are in technical/Latin (or sometimes Greek) terms.

We should either use Myalgic Encephalomyelitis as the historical term, or a new technical term describing known medical pathology (whether now or on a year or so--the pathology should be better known in a year or so, but IOM may want to rename now).

 

[soofke]

@soofke First, I love the quote in your avatar and had not seen it before! As far as your question, I never feel obligated to use the word CFS with people and am very guarded with minimal disclosure (outside of this board of course.) In this case, the co-worker who asked me was someone I had worked with for over 10 yrs and who saw how sick I'd been the last few years especially since mono with all the cardiac issues (and she has been on multiple medical leaves herself) so she was not someone who would start googling or mis-judge me. But overall, I very much agree with your point and often use words like dysautonomia, cardiac issues, etc, instead of CFS.

thnx, for years I thought it was from my favorite andapparentlyabítlessgeniusthanitookhimfor musician, just found out it's John Lennon's; now my new fave! some cute puppy eyes yourself there and yay for your coworker

I make myself call it ME lately, before it was "mono that got out of hand" or something

 

[taniaaust1]

My ME brain is completely unable to handle your post.

Item 1- I cant make heads or tails on what is being said.

Item 2- APPEALS .. alternative term for what? (note I cant jump back and forth between two different pages to hold in my mild what A, B, C, D or whatever it is is to put it in into this post). Cant make sense of this question.

Item 3. The above terms I believe accurately portray the condition, but perhaps don't sound as serious as 'myalgic encephalomyelitis'.

APPEALS stands for Abnormal Prolonged Postexertional Exhaustion And Low Stamina

I dont believe that at all accurately portrays what I have. That would only be a couple of my 90 symptoms, so its quite an inaccurate impression of the illness.

Item 4. I wouldn't call the postexertional exhaustion 'neuroimmune' or 'neuroendocrine', since we don't know those yet.

I can say I certainly have those eg I have neuro symptoms with my ME (I have common ME abnormalities such as I drop with the Rombergs test, I have abnormal EEGs etc).

I get immune symptoms with my ME (used to get swollen glands with it), my immune system often crashes when I get run down with the ME eg sore throat, reactiving viral stuff etc

I certainly have endocrine issues with this disease eg low cortisol, low testosterone (ME things).

Things are all kinds of things which help distingush ME from CFS.

Item 5. Some people are considering they have a different illness if they have criteria A,B,C,D. and excluding people who have just criteria A- calling them CFS or post viral fatigue. I have had criteria A in 2011, and after just exerting myself physically by jogging (not catching a new infection or any other insult) in 2012, now have all criteria A,B,C,D. I believe these all represent a spectrum of the same illness, based on the severity

I couldnt have got a ME diagnoses in my first year of this illness as it was atypical back then to the canadian consensus doc (I didnt have ongoing post exertional fatigue at all between the bouts of sickness i was getting). I still thou dont think diagnoses should be watered down just cause some people wouldnt fit at first and may have to wait till they end up getting worst till they do. Its more important to make sure ones who dont have ME do not wrongly get diagnosed with it.

 

[taniaaust1]

Agree! There is no word to describe the severity of the fatigue.

You've missed the point. Its not the fatigue, Im completely incapitated by so many other symptoms. Fatigue is about the 8th thing down on my list of things which affect me the most.

I cant do your survey thou I would of like to do it, my brain is incapable of its memory of carrying a piece of info from one place and going and putting it onto info in another place without what I need to read and compare being side by side. (not fatigue there but rather memory issue. its like saying dementia suffers have just fatigue affecting their brains rather then memory issues).

 

[taniaaust1]

@minkeygirl, you really do have my sympathy. This is not a straightforward poll and it requires your working memory to be in good order but I think that it would be impossible for Dr.Patient to make it 'friendlier'.

If you don't mind me making a suggestion, you could try printing the third and fourth page of the document Dr.Patient linked to. It would make the mental gymnastics a little easier. I also had to make some notes to help out with my memory.

Thanks "working memory" . i was trying to figure out what to call the blow out which stops me from being able to do that survey. Even if one printed it and had it side by side (one is still having to read info from one place and connect into the other with ones brain) still working memory can get in the way of that.

 

[taniaaust1]

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

If you focus on any one symptom eg exhaustion without including the other types of symptoms one gets with it, you are making it quite inaccurate.

 

[taniaaust1]

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

But the post exertional fatigue, thats meaningless without the full range of the other symptoms. Its the range of symptoms which makes this illness what it is, not the fatigue as such.

 

[taniaaust1]

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

debilitated/ debility .. an dictionary gave this example of word meaning ..His debilitated body, the victim of the wasting disease, could no longer support his weight.· run down, damaged, in disrepair

............

my example. Sick, illtreated, prisoners of war, struggling to stand, the jewish after the nazis.. they were debilitated. That so describes me at times, I truely feel like Im about to drop dead or when Im collapsed on the floor so weak that at times I cant even hold a cup.

If you want a "one word description", debilitated .. that is how I'd describe my body. Its in complete disrepair, damaged, run down, etc. My body isnt just "fatigued"!. Im not just exhausted either, my body is "damaged" its sick.

if you are seeking a more serious word, this one more explains the state many of us have. (There shouldnt be more focus put on ONE symptom).

 

[taniaaust1]

I find that Myalgic Encephalomyelitis just stops people in their tracks and shuts them up. While it sounds like something "terrible" they don't want to admit that they have no idea what it means. I don't tell this to many docs though, just friends.

Sushi

I think you are soo lucky if you can say those ME words, unfortunately I cant even pronounce (I often try and end up just giving up). I really do hope when they find out what causes this illness, that they will give it a name I can prounouce!

 

[Scarecrow]

Thanks "working memory" . i was trying to figure out what to call the blow out which stops me from being able to do that survey. Even if one printed it and had it side by side (one is still having to read info from one place and connect into the other with ones brain) still working memory can get in the way of that.

I agree. It might help a little but it doesn't solve the problem if your memory isn't up to it.