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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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POLL OPEN! Terminology, Definitions, and Criteria

Discussion in 'General ME/CFS Discussion' started by Dr.Patient, Jul 10, 2014.

?

Please indicate if you agree or disagree with each of these 5 items, thank you!

  1. Agree with Item 1

    57.1%
  2. Disagree with Item 1

    28.6%
  3. Agree with Item 2

    28.6%
  4. Disagree with Item 2

    71.4%
  5. Agree with Item 3

    57.1%
  6. Disagree with Item 3

    28.6%
  7. Agree with Item 4

    71.4%
  8. Disagree with Item 4

    28.6%
  9. Agree with Item 5

    42.9%
  10. Disagree with Item 5

    42.9%
Multiple votes are allowed.
  1. SOC

    SOC Senior Member

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    The ICC uses "neuroimmune exhaustion"
     
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  2. justy

    justy Senior Member

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

    Scarecrow Senior Member

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    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.
     
    Last edited: Jul 12, 2014
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  4. Scarecrow

    Scarecrow Senior Member

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    Last edited: Jul 12, 2014
  5. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    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!
     
  6. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    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.
     
  7. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Debilitating ------ syndrome? Let's all chime in for terms, thanks!
     
  8. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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

    Dr.Patient There is no kinship like the one we share!

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    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).
     
  10. justy

    justy Senior Member

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    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!
     
  11. WillowJ

    WillowJ Senior Member

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    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.
     
    Last edited: Jul 13, 2014
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  12. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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

    WillowJ Senior Member

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

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

    Dr.Patient There is no kinship like the one we share!

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    Yes, like 'Panesthenia Gravis' :)
     
  15. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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

    SDSue Florida

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    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.
     
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  17. Mij

    Mij Senior Member

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    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.
     
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  18. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    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!
     
  19. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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

    SOC Senior Member

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    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.
     
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