The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Poll: Which name is better: Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Dolphin, Feb 11, 2015.

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Which name do you think is better:Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease?

  1. I strongly believe Chronic Fatigue Syndrome would be better for the field

    0 vote(s)
    0.0%
  2. I believe Chronic Fatigue Syndrome would be better for the field

    6 vote(s)
    5.5%
  3. I don't believe either name would be better or worse

    27 vote(s)
    24.8%
  4. I believe Systemic Exertion Intolerance Disease would be better for the field

    52 vote(s)
    47.7%
  5. I strongly believe Systemic Exertion Intolerance Disease would be better for the field

    24 vote(s)
    22.0%
  1. Dolphin

    Dolphin Senior Member

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    I thought it would be interesting to take M.E. out of the mix and simply do a poll comparing "Chronic Fatigue Syndrome" and "Systemic Exertion Intolerance Disease". This doesn't mean it wouldn't be used, as it is now. It is to see which other name do people prefer (and ideally find out why).
     
    Last edited: Feb 11, 2015
  2. Dolphin

    Dolphin Senior Member

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    I think "Chronic Fatigue Syndrome" risks criteria being used that don't require post-exertional exacerbation of symptoms. So one can get
    (i) the Oxford "Chronic Fatigue Syndrome" criteria that just require mental and physical fatigue;
    (ii) the Fukuda criteria for "Chronic Fatigue Syndrome" that don't require post-exertional exacerbation of symptoms;
    (iii) the CDC's empiric criteria that cover 2.54% of the population and allow lots of people in who have major depressive disorder.

    These definitions have led to all sorts of problems in the field.

    Having the term "Systemic Exertion Intolerance Disease" ensures that whatever the criteria post-exertional exacerbation of symptoms will be part of it.
     
    Last edited: Feb 13, 2015
  3. Dolphin

    Dolphin Senior Member

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    "Systemic Exertion Intolerance Disease" includes "disease" so I prefer that as suggesting a more serious condition than "Chronic Fatigue Syndrome" which has "syndrome".
     
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  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    (As an aside) I think the new definition will help.

    I think the new name was well-meant and intended to solve problems, but I honestly don't think it will do this very well.

    I don't see any kind of public understanding of "exertion intolerance" in the article comments.

    The doctor confusion could be greatly improved at any point regardless of name by fixing the definition and an infusion of dollars to well-thought medical research, then adding info to medical school and medical conferences.

    SEID is a little better than "chronic fatigue syndrome" because it at least focuses on something important and distinguishing about the disease, but I suspect it will not be particularly helpful to use such plain language, to describe a main symptom rather than using Latin (or possibly Greek) to describe some aspect of pathology.

    I'm sorry to say that, because I am certain the committee was well-intentioned and really wanted it to help, but I just don't think the name (in and of itself) will substantially improve doctor, nurse, other HCP, or public perception. I hope I'm wrong.

    I don't know why they didn't say something about asthenia, in order to emphasize this aspect.
     
    Last edited: Feb 12, 2015
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  5. Simon

    Simon

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    I think there are two issues here
    - best definition to use in research (and maybe clinical pratice)
    - best definition for affecting the public/wider medical view

    I took this poll to be about using the definition in the 'research field' and hence voted 'strongly believe' will be better because I think focusing on the cardinal symptom of PEM will lead to more meaningful and more accurate research findings.

    I'm more ambivalent about SEID use more widely
     
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  6. Sidereal

    Sidereal Senior Member

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    I would imagine asthenia wasn't used because they said they wanted to sever connections to CFS and neurasthenia. Historically, asthenia is associated with nervous weakness and anxiety disorders, as in neurasthenia or neurocirculatory asthenia. One of the old names for ME was neuromyasthenia (to distinguish it from neurasthenia) which I think was a pretty good descriptive term but really it has the same problem of associations with the things we want to get away from.
     
  7. batteredoldbook

    batteredoldbook Senior Member

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    Agree: SEID, could well help to move the science forward. Trouble is that M.E is a very strong name. Patients identify with it and group together around it. Further the idea that advocacy can take place in a context where the disease name may change in 5 years is silly.

    Am becoming concerned the community is going to be split down the middle by this.
     
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  8. batteredoldbook

    batteredoldbook Senior Member

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    Am becoming concerned that *I'm* going to be split down the middle by this. ;)
     
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  9. justy

    justy Donate Advocate Demonstrate

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    I have to apologise up front and say i'm sticking with CFS...for now. In the absence of a decvent name change I don't think a change to one that is divisive and sounds ridiculous is at all helpful - especially if it changes again. I agree people could be split over this - the cynical part of me wonders if that is what they want - to shut us up!

    What would be better to my mind would be to spend money on good research - using ICC or CCC definitions, find some decent treatments and THEN change the name. Surely we should be waiting for the outcome of the Fluge and Mella trials and the UK Rituximab trials etc etc before jumping the gun and re naming the disease.

    I don't think CFS IS a better name, its just that sticking with the familiar until their is greater knowledge seems less confusing and divisisve to me.
     
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  10. Bob

    Bob

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    I'll be glad to see 'CFS' become obsolete, but I think 'SEID' isn't a great name. I think I'd be happy using ME/SEID.
     
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  11. Valentijn

    Valentijn Senior Member

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    Yes, I want to hang on to ME. But SEID is a great improvement over CFS. So I'm relatively satisfied with ME/SEID for now, though I definitely want to see improvement regarding the name in the future.

    I don't think many (any?) names could be worse than CFS.
     
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  12. Sidereal

    Sidereal Senior Member

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    I'm glad to see CFS go so for now I'm sticking with ME/SEID.
     
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  13. green_monster

    green_monster

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    SEID isn't perfect but the best thign about it is that it isn't CFS. We need to make a clean break from CFS, completely fresh start. Cut CFS off at the knees and let it rot.

    I believe this is once in a generation opportunity to have "our own disease", so to speak. Even if the proposed name isn't perfect, at least it is unique and at least it applies specifically to whatever is making us all ill.

    In time I have no doubt that research will identify subsets of our illness, perhaps even completely different illnesses, but the IOM can only say something today if they can fully justify it. They feel unable to fully justify using words like 'immune' or 'endocrine', because of a lack of evidence. I think most people on the IOM committee would fully agree that there are immune problems, etc., but they have to be very careful in what they claim. They are the ones risking their reputations and careers on this, putting their signature on it, and to write something in an IOM report that you can't justify is not advised.

    As of today, as the IOM report says, there simply hasn't been enough research done to accurately identify subsets. If it was already possible to easily and accurately identify subsets we wouldn't be having this debate about names now.

    It's chicken and egg. Which comes first, the name or the illness? In our case we have to give it a name first, even if imperfect, and then puzzle out what the illness actually is. I would have preferred if it was just left as ME from day one, instead of being given endless different names, but right now I'm willing to accept SEID, though imperfect, just to make a clean break from CFS.

    If the IOM recommendations are followed by HHS and other govt. agencies and departments, the whole world will soon know that SEID is a real, physical illness.

    I suppose it boils down to this- We can either accept the current horrible situation, with psychobabble and abuse and fatigue and very little research, or we can grasp this new opportunity, this fresh start, and support the IOM recommendations. The IOM are pretty much the highest medical authority in the land, so if they can't help us, nobody can. I'm going to support the IOM report and accept SEID even if it isn't ideal.

    Sorry for writing so much in one go, I know it's often impossible for people to read so much, but I only really get one chance at writing something serious then I'm wiped out for days, so I have to just write lots and hope for the best. Sorry people. Take care.
     
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  14. A.B.

    A.B. Senior Member

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    With all these news articles coming out, it's even more apparent how much damage the name CFS has done. So many comments by people who are confused and equate fatigue with CFS. Even many articles and doctors get it wrong when they should know better.
     
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  15. Aurator

    Aurator Senior Member

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    I've grown so weary of the name Chronic Fatigue Syndrome and all the misinformation, lack of progress and blaming the disease on the patient that it's brought in its wake that I'm ready for a change, whatever it is (more or less). I'm sick of being sick with CFS and would prefer to be sick with SEID instead.

    Maybe in a few years time I'll be as sick of SEID as I currently am of CFS, but at least I'll have had a change from something I've grown thoroughly weary of. It's a bit like when you can't sleep and you get fed up of tossing and turning in the same bed so you go and find another one. You might get sick of tossing and turning in that one too eventually but at least when you first get into it you feel an initial sense of relief to get away from the other bed that brought you no peace and no comfort.
     
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  16. astraea

    astraea

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    Systemic Exertion Intolerance Disease actually describes quite well ( at least for a three word phrase) what is most pervasive, moment to moment, in my illness. Or course no name can do any kind of justice to the incredible complexity of the experience of this illness, but I think this is MUCH better than CFS. I still think doctors and people are not going to take us and our illness very seriously, however, language and naming are incredibly powerful and we need all the help we can get to correct the pervasive dismissals, pig-headedness, and ignorance of people's perception of this illness.
     
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  17. Bob

    Bob

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    On Twitter, Guido Den Broeder suggested:
    "Systemic Exhaustion and Immune Deficiency Syndrome (SEIDS)."

    I think that's rather a good name, and the acronym seems easier to pronounce with an 's' on the end.
     
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  18. Dolphin

    Dolphin Senior Member

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    I'm not sure if the evidence is strong enough to call it an immune deficiency.
     
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  19. Bob

    Bob

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    The full report does discuss NK cell function deficiency, so perhaps that's a justification for the suggested name, but I haven't read the immunological section in detail yet.
     
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  20. robynk

    robynk

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    The only acceptable word to me in this new name is "disease," to finally give ME/CFS some validity (to those that don't have it or believe it). But, overall, I don't like the lengthy name and think it only adds to more confusion. (I've had CFS for 14 years and while I am currently feeling better, I doubt I will remember the name of the disease --- and I have it.) I agree that the money should be placed into research and treatment first, and then find a more appropriate name. Right now, the money will be spent on new letterhead and forms. No surprise that it's all about the marketing.
     
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