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Justin's Written Comments for IoM Panel First Meeting

Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Jan 15, 2014.

  1. Nielk

    Nielk

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    I never understood the ME/CFS term. Which disease has two different names? Is it because they equate the two? Is it because they can't make up their minds which One to pick? Is it a multiple choice?

    It's like saying this subject of naming the disease is too controversial, so we leave it up to choice. Is the disease a hybrid?

    I think that The CCC used the name ME/CFS because at that time, they did not feel that ME will be accepted. When the time came for the ICC, they felt that now the timing was right for ME to be accepted.
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  2. Snowdrop

    Snowdrop Senior Member

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    I think I read somewhere on PR here that the CFS attached to the definition was merely out of recognition that this is how it is referred to in the US otherwise the definition would have been simply ME.
    Edit: I see Nielk addressed that question.
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  3. golden

    golden Senior Member

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    Thanks for relating Dr.Hydes position in all this for me.

    I appreciate that.

    Its inconceivable to me that the 50 'experts' have nothing to do with Dr.Hyde and his 'experts'.
  4. Ember

    Ember Senior Member

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  5. Snowdrop

    Snowdrop Senior Member

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    Again, maybe I misunderstand but I don't think it's the CCC definition that is transitional but the name.
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  6. Ember

    Ember Senior Member

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    From "Myalgic Encephalomyelits/Chronic Fatigue Syndrome Clinical Working Case Definition and Treatment Protocols" (CCC):
    How could HHS or the IOM change the name of the CCC?
  7. Snowdrop

    Snowdrop Senior Member

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    @Ember My bad. I thought you were saying that about the name ME/CFS not the CCC. That is what I was referring to in my comment. That my understanding was that ME/CFS the CFS was added as provisional. I had nothing at all to say about HHS or IOM they have nothing whatsoever to do with it.
  8. Bob

    Bob

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    I think this explains the logic:
    That explains the logic.

    You might now say that these opinions have been superseded, by more recent opinions, as quoted below. But there is a lack of consistency:

    Also, of course, you recently questioned whether Fukuda CFS with post-exertional malaise might be a closer description of 'ME' than of 'CFS'. If that's the case then it seems logical to use the 'ME' term for CCC.


    Personally though, I think names are a distraction. If they come up with a good description of ME then the name won't matter so much, and an appropriate name will follow-on naturally. If they don't come up with a good description of ME, then the whole process is a waste of time anyway, whatever name they use.
    Last edited: Jan 17, 2014
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  9. Ember

    Ember Senior Member

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    I was asking my question, Bob, from the perspective of the audience being addressed in these written comments. Although the authors of the CCC didn't have plans to write another definition, the CCC may turn out, even as its name suggests, to have been a transitional definition. But the CCC currently defines and is used to diagnose ME/CFS. So how logically consistent is it to ask HHS or the IOM to both adopt the CCC and use the name ME? If they were to adopt the CCC, wouldn't they then be using the name ME/CFS?
    golden likes this.
  10. Bob

    Bob

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    Oh, I see what you mean. Yes, that's a good point. It would help the process if we are consistent, and don't send them mixed messages. Perhaps some of your text that I've quoted in my previous post might help to provide an explanation.

    Many patients consider the CCC to describe 'ME', which is perhaps a good enough reason to associate the name 'ME' with the CCC.
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  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I'd probably put Dr. Hyde in my top 3 ME doctors I admire. I want to go get worked up by him. He is extremely thorough which I admire to no end, considering how we are usually treated. He also tells it like it is. He's got great quotes in Osler's Web. e.g. He deemed certain actions by NIH on ME to be 'state-sponsored terrorism.'
    golden likes this.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree with snowdrop and Bob. I believe CCC explained that it was basically a definition of ME but used the term "ME/CFS" for transitional purposes. The term "ME/CFS" being transitional from the term "CFS" to the term "ME" in North America. I don't think the definition itself was meant to be transitional (any more than any other disease definition is).

    Ember, as you point out I could be clearer that I am asking for CCC to be adopted, with the only change being from the term "ME/CFS" to "ME." I will change that in my letter.
  13. golden

    golden Senior Member

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    is it correct to say then :

    that this 'ME' (transitionary ME/CFS) definition in the CCC is nothing or very little to do with Dr.Hydes M.E. definition?


    thanks
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    @golden, sorry, I don't remember what the differences were. It's been a while since I read Dr. Hyde's definition. I wouldn't say it has nothing to do with the CCC, but beyond that, I can't really comment right now. I am too exhausted now to read his definition, it is quite lengthy. I hope someone else can answer this better.
    golden likes this.
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have finished and sent in my letter. Thanks everyone for your feedback. I considered every suggestion here, on the Facebook group and in PM's I received and followed most of the suggestions. I decided to leave in my thoughts that CAA and PANDORA's comments were not representative of most patients, but I toned down the language as suggested.
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