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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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POLL OPEN! Terminology, Definitions, and Criteria

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

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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. Dr.Patient

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

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    Okay, I read through the International Consensus Criteria, and here are my thoughts-

    Here's the link for the ICC for ME: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf?forumid=331851

    First of all, EXCELLENT description, and incorporation of postexertional exhaustion!

    Item 1. The term 'myalgic' 'encephalo' 'myelitis' picks up only the criteria in B, excluding the sine qua non criteria A. Also excludes C and D.

    Item 2. Suggest alternate terms APPEALS and APPEALS SYNDROME. APPEALS stands for Abnormal Prolonged Postexertional Exhaustion And Low Stamina - this is for patients who have just criteria A. The APPEALS SYNDROME includes criteria A, and one or more of B, C, D.

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

    Item 4. I wouldn't call the postexertional exhaustion 'neuroimmune' or 'neuroendocrine', since we don't know those yet. The exhaustion may be mainly mitochondrial or due to abnormal production, storage and distribution of ATP molecules.

    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.

    Let your thoughts flow now!:)
    Last edited: Jul 10, 2014
  2. minkeygirl

    minkeygirl Senior Member

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    I don't have enough cognitive function to even read this let alone understand it. The descriptions are far too confusing for me. Criteria A,B,C but not D? Sine quo what? Everything in my brain is firing. I'm out.
  3. Dr.Patient

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

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    Criteria A, B, C, D are the criteria in the International Consensus Criteria for ME.
  4. minkeygirl

    minkeygirl Senior Member

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    Your missing the point. I can't even get that far without everything in my brain firing because it's too confusing. I can't remember t what I read by the time I get to the end if a sentence

    I can't and won't be able to read this so I'm out.
    taniaaust1, beaker, Valentijn and 2 others like this.
  5. lansbergen

    lansbergen Senior Member

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    There is no way of knowing that. Futhermore one can be reinfected.
  6. Scarecrow

    Scarecrow Senior Member

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    Been there. I feel for you. I used to say that I couldn't understand sentences more complicated than 'The cat sat on the mat' for that very reason. So your avatar seems strangely coincidental.

    Dr. Patient, I will try to get my noggin around your questions but it may take me a while.
  7. Kina

    Kina Moderation Team Lead

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    I don't like the name APPEALS -- it's sounds like some new-age psychiatric term and nobody would ever be able to remember what it stands for. There is much much more to ME than PEM and low stamina. It isn't much better than CFS which a ridiculous insulting stupid moronic name ... oops shouldn't go off the rails here. :eek:

    I can't fill out your poll -- it's too confusing for me. You really need to have the options in the poll itself.
    taniaaust1, Wildcat, beaker and 11 others like this.
  8. minkeygirl

    minkeygirl Senior Member

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    As Laura Hillenbrand says

    "This illness is to fatigue what a nuclear bomb is to a match. It's an absurd mischaracterization."
    JBB, NK17, taniaaust1 and 8 others like this.
  9. Dr.Patient

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

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    Agree! There is no word to describe the severity of the fatigue.
    beaker likes this.
  10. Dr.Patient

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

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    You can just check Disagree to Item 2.
  11. Mij

    Mij Senior Member

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    @Dr.Patient have you seen this? I've posted it several times on the forum. It's very good. 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.


    ahmo, JoanDublin, SOC and 1 other person like this.
  12. minkeygirl

    minkeygirl Senior Member

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    People are telling you it's confusing and they can't fill it out. You telling people to check arbitrary categories you determined defeats the purpose.
  13. Dr.Patient

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

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    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...
  14. Dr.Patient

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

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

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

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    Perhaps incapacitation a better word than fatigue?
  16. Scarecrow

    Scarecrow Senior Member

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    @Dr.Patient OK. I've just voted and will also list my responses/reasons.

    Item 1. Agree. I don't necessarily see this as a problem and it's no real surprise given that the authors are positioning M.E. as an acquired neurological disease with other dysfunctions arising from the primary neurological one. This emphasis resonates with me because my first significant problem after I developed IBS was cognitive.

    Item 2. Disagree. I'm really sorry but I hate it. I understand where you are coming from but there's far too much emphasis on energy production systems. Based on my own experience I feel that while very prominent in the illness, that particular dysfunction is more downstream than you propose. It wouldn't shock me if I was wrong (could a dysfunctional energy system cause IBS? I'm sure you'll have a better idea then I do.)

    Item 3. Disagree. I'm with Kina. Sorry again but it doesn't appeal to me ;) and I think that the focus is wrong.

    Item 4. Disagree. Of course, your correct: we don't know. My hunch is that the exhaustion is immunological, but the lack of energy and rapid fatigability is likely to be related to mitochondrial function.

    Item 5. Disagree. Again we don't know. So as much by default rather than genuine disagreement I must disagree.

    I basically see M.E. as a horrendous cascade of dysfunction. Even when we have the same symptoms, we seem to have developed them in apparently different and random orders and in varying degrees of severity. Clearly minkeygirl and I both have appalling cognitive difficulties, though I am much improved. In comparison, my energy production, while definitely gone wrong, has never been quite so bad. It's maddening.

    Have you seen the this thread http://forums.phoenixrising.me/index.php?threads/is-cdc-out-to-bury-pem.31292/page-4#post-481009 It may interest you.

    Also this one http://forums.phoenixrising.me/index.php?threads/2-types-of-me-cfs-a-short-informal-poll.31319/
    Dr.Patient likes this.
  17. minkeygirl

    minkeygirl Senior Member

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    I'm not incapacitated. I have crippling fatigue but I still function.
    Mij and TigerLilea like this.
  18. Soundthealarm21

    Soundthealarm21 Senior Member

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    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.?
    taniaaust1, beaker, WillowJ and 2 others like this.
  19. minkeygirl

    minkeygirl Senior Member

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    They have been trying to change the name for years. A few people on one forum who vote in a poll is not going to do anything. IMO
    NK17 and Soundthealarm21 like this.
  20. Scarecrow

    Scarecrow Senior Member

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    @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.
    NK17 and Dr.Patient like this.

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