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Name preference? CFS, ME-itis (2 versions), ME-opathy, SEID, or Ramsay

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Sean, Feb 16, 2015.

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Name preference? CFS, CFIDS, ME-itis, ME-opathy, SEID, or Ramsay

  1. CFS (Chronic Fatigue Syndrome)

    0 vote(s)
    0.0%
  2. CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome)

    0 vote(s)
    0.0%
  3. ME-itis (Myalgic Encephalomyelitis)

    18 vote(s)
    25.0%
  4. ME-opathy (Myalgic Encephalopathy)

    4 vote(s)
    5.6%
  5. SEID (Systemic Exertion Intolerance Disease)

    18 vote(s)
    25.0%
  6. Ramsay's Disease (or Ramsay Disease)

    26 vote(s)
    36.1%
  7. Other – eponymous (Please post any suggestions in the thread.)

    1 vote(s)
    1.4%
  8. Other – non-eponymous (Please post any suggestions in the thread.)

    2 vote(s)
    2.8%
  9. Don't know / No strong preference

    3 vote(s)
    4.2%
  10. ME-itis 2 (Myalgic Encephalitis)

    0 vote(s)
    0.0%
  1. Dolphin

    Dolphin Senior Member

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    You can always add options if you want (and you're not at some limit).
     
  2. snowathlete

    snowathlete

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    Which is fair enough. Question though: Say the IOM's SEID gets adopted, research using their definition is conducted and then a drug is found that gets approved to treat that disease; would you refuse the treatment because you don't have SEID, you have ME still, or would you want the treatment? Serious question, because I could see people who are adamant they have ME and will continue to call their disease ME, ending up in this situation one day.
     
  3. lansbergen

    lansbergen Senior Member

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    Depends on the drug.
     
  4. Dolphin

    Dolphin Senior Member

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    People who are school of thought that focus a lot on saying ME is not CFS often quote evidence from CFS and ME/CFS studies. Both the International Consensus Criteria paper and International Consensus Primer have lots and lots of references to CFS and ME/CFS studies.
     
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  5. snowathlete

    snowathlete

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    Good point.
    Rituximab seems a good example. Assume it is found to work well in ~60% of patients, but no solid data on subgroups and why it works in some but not others. With a mortality rate from treatment of between 2.4-10.4% (as in this mortality study).
     
  6. beaverfury

    beaverfury beaverfury

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    West Australia
    Neuroendocrine immune dysfunction
     
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  7. Sean

    Sean Senior Member

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    Ah, I though you couldn't edit questions, but turns out that means you can't edit existing questions, but can add new ones. Thanks.

    ----------------------------

    Myalgic Encephalitis is now an option as: ME-itis 2

    I had already allowed the option to change your vote, so please feel free to do so if you wish.
     
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  8. Ember

    Ember Senior Member

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    In addition, members of the International Consensus Panel have collectively:
    But some will use the state of the research to justify inaction.
     
    oceiv likes this.
  9. Dolphin

    Dolphin Senior Member

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    Some will highlight that if patients were to depend on ME only studies, there is little to rely on. Byron Hyde talks a lot about this and that in ME but has published little in the last two decades: to the medical community these days opinions that are not published have little status.

    One prominent ME is not CFS campaigner doesn't tend to rely on ME and ME/CFS studies. Instead, they seem to rely when giving advice on ME on general information (not illness-specific) and information from supplement companies and the like. I find information from ME/CFS and CFS studies more informative: similar in a way to the International Consensus Primer authors who quoted lots and lots of CFS and ME/CFS studies.
     
    Last edited: Feb 17, 2015
  10. Ember

    Ember Senior Member

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    By "some," I was referring especially those who fund the research, i.e., the state of the research becomes the reason for not funding the necessary research.
     
    oceiv likes this.
  11. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    I wish this was a mutiple choice poll as there are several names I wouldnt mind. Im not pushing for the ME names like I would of done otherwise as I really dislike the new definition and do not want it put onto one of those as it will just further confuse the whole ME situation.

    I also feel like it would be a dishonour to Ramsey to put his name to that new bad definition. Thou I do like Ramsey Disease.

    I think we need to be changing the new definition first as I know there are others like myself who do not want the ME label we prefer put onto a crappy definition.
    .......
    If we have to keep the new definition .. I prefer the name Tahoe Disease or TD for short... to help bring to attention that this disease happens in outbreaks.
     
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I forgive you! I'm just frustrated that it is almost never mentioned as a possibility.
     
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Same here. Thanks, @Sean for adding myalgic encephalitis, but I now have the problem that I like several names equally! It may be possible to make the poll multiple-choice.

    Can you clarify - when you have listed the ME options with '-itis', '-opathy', etc., you're just doing that to highlight the fact that there is more than one version of ME, and not suggesting that '-itis', etc. should be part of the name, are you? If so (unless I am the only Aspie-prone person who is reading things too literally) maybe it would be better to just put 'ME' three times, with the full name in brackets after each one. (Hope I'm not being too awkward - I'm not trying to be!) :D
     
  14. Sean

    Sean Senior Member

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    My understanding is that the forum software doesn't offer a preferential poll, only one where all choices are equal.

    Also, in the real world we only get to choose one.

    However feel free to list your second or third preferences in the thread. My second choice would be SEID.

    Correct, just using it to distinguish between them.
     
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  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I like them equally. It is possible to make polls multiple-choice here - I have done it myself, e.g. this one. I'm not looking at a preferential poll, just one where you can tick multiple options if you have more than one favourite.
     
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  16. Sean

    Sean Senior Member

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    I understand, but as I said, in the real world we only get to choose one.

    So, if you have to choose one, what would it be?
     
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Surely it's not a matter of individual preferences as much as how many votes are received for each option?

    I cannot choose between two options.
     
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  18. Min

    Min Guest

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    Ramsay disease: VIA: Maryann Spurgin with Liz Willow and 4 others.

     
    Last edited by a moderator: Feb 19, 2015
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  19. Andrew

    Andrew Senior Member

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    If they were dead set against calling it ME or ME/CFS, they should have called it Acheson-Ramsay Disease. Acheson for first writing about ME, and Ramsay for all the work he did describing it. The only reason I'm not simply suggesting "Ramsay Disease" is because there is a Ramsay Hunt disorder and I want to make it a clear distinction.
     
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  20. Sean

    Sean Senior Member

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    oceiv and MeSci like this.

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