POLL OPEN! Terminology, Definitions, and Criteria

[SOC]

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

The ICC uses "neuroimmune exhaustion"

 

[justy]

Sorry I cant make any sense of this poll at all - it just makes my brain freeze - can someone explain what it all means?

 

[Scarecrow]

Sorry I cant make any sense of this poll at all - it just makes my brain freeze - can someone explain what it all means?

I'll try, Justy

To make sense of the poll, you need to simultaneously keep in mind:

• the poll questions
• the statements (items) that Dr.Patient made
• the ICC, which Dr. Patient linked to; criteria A, B, C and D (pages 3 and 4)

So, to take item 1, Dr. Patient states that the literal meaning of the name 'myalgic encephalomyelitis' refers only to criteria B of the ICC, and ignores criteria A (PENE). Do you agree that this is the case? [His point is that you can't have ME without satisfying criteria A, so it's a bit strange (in his opinion) that the name doesn't reflect criteria A.]

Item 2. Because he doesn't think that the myalgic encephalomyelitis is apt, he suggests a new name - APPEALS. He thinks that this is more reflective of the criteria as a whole because all four criteria are involved. Do you agree?

If you haven't already done so, it may help further if you look at the thread that Dr. Patient started, the name of which is something along the lines of Is ME a metabolic disorder. I'll go find it, then post the link.

Hope this has helped some.

 

[Scarecrow]

The correct name of the thread is 'CFS is a metabolic condition!'

http://forums.phoenixrising.me/index.php?threads/cfs-is-a-metabolic-condition.30954/

Edited to add this p.s.
On second thoughts this is a very long thread. Reading the first post will be sufficient, the rest only if it piques your interest.

 

[Dr.Patient]

I'll try, Justy

To make sense of the poll, you need to simultaneously keep in mind:

• the poll questions
• the statements (items) that Dr.Patient made
• the ICC, which Dr. Patient linked to; criteria A, B, C and D (pages 3 and 4)

So, to take item 1, Dr. Patient states that the literal meaning of the name 'myalgic encephalomyelitis' refers only to criteria B of the ICC, and ignores criteria A (PENE). Do you agree that this is the case? [His point is that you can't have ME without satisfying criteria A, so it's a bit strange (in his opinion) that the name doesn't reflect criteria A.]

Item 2. Because he doesn't think that the myalgic encephalomyelitis is apt, he suggests a new name - APPEALS. He thinks that this is more reflective of the criteria as a whole because all four criteria are involved. Do you agree?

If you haven't already done so, it may help further if you look at the thread that Dr. Patient started, the name of which is something along the lines of Is ME a metabolic disorder. I'll go find it, then post the link.

Hope this has helped some.

Thank you @Scarecrow, appreciate your effort!

People can go to the first post in this thread which has the questions as Items 1,2,3,4,5, with the poll on the top. Then, open the ICC criteria in another window, or print the criteria and look at the criteria A,B,C,D as defined in them. Read each Item in the thread, and refer to the ICC criteria, and then mark Agree or Disagree on the poll. Thanks!
PS: I was trying to start this thread for more than a week, before I had a 'good' day when I could do it. So, everyone, please wait for a 'good' day to do this poll, thanks!

 

[Dr.Patient]

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).

I think the name should indicate the severity of this illness, so laymen hearing the name will gasp as they would at AIDS. No need to know the medical pathology of the condition. If you literally expand AIDS, it is acquired immune deficiency syndrome. We all have, and all diabetics, and other chronic illness have acquired immune deficiency. It is the picture that is associated with the term that scares laymen. Remember here, we all also have a tough time convincing laymen about our condition as well, not just physicians.

I think we all should be ready with a powerful term in case the IOM decides that ME is inaccurate, and assigns it another 'benign' name.

 

[Dr.Patient]

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).

Debilitating ------ syndrome? Let's all chime in for terms, thanks!

 

[Dr.Patient]

ICC criteria do allow Typical and Atypical ME, and degrees of severity mild, moderate, severe, and very severe.

 

[Dr.Patient]

ICC also states-

Criterial subgroups: Postexertional neuroimmune exhaustion is the hallmark feature. It may be helpful to subgroup according to which of the other diagnostic criterial patterns best represent a patient's cluster of most severe symptoms: neurological, immune, energy metabolism/transport, or eclectic ( symptoms widely distributed amongst subgroups).

 

[justy]

I'll try, Justy

To make sense of the poll, you need to simultaneously keep in mind:

• the poll questions
• the statements (items) that Dr.Patient made
• the ICC, which Dr. Patient linked to; criteria A, B, C and D (pages 3 and 4)

So, to take item 1, Dr. Patient states that the literal meaning of the name 'myalgic encephalomyelitis' refers only to criteria B of the ICC, and ignores criteria A (PENE). Do you agree that this is the case? [His point is that you can't have ME without satisfying criteria A, so it's a bit strange (in his opinion) that the name doesn't reflect criteria A.]

Item 2. Because he doesn't think that the myalgic encephalomyelitis is apt, he suggests a new name - APPEALS. He thinks that this is more reflective of the criteria as a whole because all four criteria are involved. Do you agree?

If you haven't already done so, it may help further if you look at the thread that Dr. Patient started, the name of which is something along the lines of Is ME a metabolic disorder. I'll go find it, then post the link.

Hope this has helped some.

Thanks for your efforts but im too sick right now to understand all this - I cant hold all the different information from different places and try and evaluate. Just been told I have lyme and am on antibiotics for chest complint and my head is vibrating like hell since I started the doxycycline yetsreday.

Perhaps something less demanding would be good for sick M.E patients to understand? anyway ill stand down from this thread for now as its making my brain hurt!

 

[WillowJ]

I think the name should indicate the severity of this illness, so laymen hearing the name will gasp as they would at AIDS. No need to know the medical pathology of the condition. If you literally expand AIDS, it is acquired immune deficiency syndrome. We all have, and all diabetics, and other chronic illness have acquired immune deficiency. It is the picture that is associated with the term that scares laymen. Remember here, we all also have a tough time convincing laymen about our condition as well, not just physicians.

I think we all should be ready with a powerful term in case the IOM decides that ME is inaccurate, and assigns it another 'benign' name.

Good point that there is at least one disease named in more or less plain language (COPD would be another). Most diseases that don't conform to the technical nomenclature use a person's name (which has fallen out of fashion, for the most part), but not all.

However the majority of diseases are named in Latin, and I do think that's our best bet in order to be taken seriously: to follow the most common convention.

I think they gasp at AIDS because of the successful education campaigns, and because there is a memory of people dying in droves before there was treatment.

And, as you said, the complete picture associated. Which is kind of weird why it's a concern that ME incorporates only some of the pathology, as that's kind of standard for naming conventions. It would make more sense to me to say "IOM asked for new name input and we should give them great options".

I hope the experts on the panel can stop any poor result, but it's uncertain whether the people who are ignorant about ME will be able to pull something over.

 

[Dr.Patient]

Or like 'Myas'thenia' 'gravis', which means 'serious weakness of muscles', with nothing indicating the pathology.

 

[WillowJ]

Or like 'Myas'thenia' 'gravis', which means 'serious weakness of muscles', with nothing indicating the pathology.

right, or like Malaria, which means 'bad air', and is very outdated understanding.

But something more like MG could be an option for us.

 

[Dr.Patient]

Yes, like 'Panesthenia Gravis'

 

[Dr.Patient]

I believe it also helps to piggyback onto an established, serious illness that people are familiar with.

 

[SDSue]

At the end of the day, nobody in medicine really cares if we don't "feel good". Calling PEM or CFS by a feelings (symptoms) label is interesting at best, and quite damaging at worst. At least ME sounds legit and attempts to identify the underlying pathology.

No doctor asks the diabetic "how are you feeling today?" and really cares about the answer. You want to get a doctor excited, talk about your elevated A1C or blood glucose.

Until PEM and ME can be routinely measured and proven with something simpler than a 2-day CPET or post-exercise genetic expression, mainstream medicine won't get past our feelings - the same feelings that got many of us labeled all sorts of psychological crap terms before we were properly diagnosed.

When biological markers and causes are found, hopefully a name will reveal itself. Until then, divisiveness over names doesn't excite me …….. I'm feeling too crabby for that today.

 

[Mij]

I believe it also helps to piggyback onto an established, serious illness that people are familiar with.

When you say "people" , are you looking for a term that we can respond with when they ask? I like "medical condition", people respect that. As far as a diagnostic, I would like PEM to be the focus and distinctive feature for ME. Exercise improves MS and a lot of other neuro illnesses but not for us.

 

[Dr.Patient]

When you say "people" , are you looking for a term that we can respond with when they ask? I like "medical condition", people respect that. As far as a diagnostic, I would like PEM to be the focus and distinctive feature for ME. Exercise improves MS and a lot of other neuro illnesses but not for us.

Yes, things we need to focus on - every exertion causes exhaustion. What is different with us is, this exhaustion is prolonged. Some people have an immediate onset and some a delayed onset of this exhaustion, so we cannot use this. But other illnesses recover after exhaustion, not us. We have a delayed recovery. So we need terms that indicate these.

Then the severity of this- maybe terms like debilitating or incapacitating.

Then the word syndrome, since our illness involves multiple systems.

Please chime in with your thoughts, thanks!

 

[Dr.Patient]

The term myalgic encephalomyelitis, though sounds serious, does not incorporate these 3 features.

 

[SOC]

We've had this discussion about a new name many times before and gotten nowhere. There is not a good answer... yet. We'll be better able to figure out an appropriate name when we know more about the illness. ME works fine as a placeholder until then.