Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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"Patients battle for justice" - opinion piece from Leonard Jason

Discussion in 'General ME/CFS News' started by Kyla, Sep 28, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    This is pretty great (in my opinion), I recommend clicking through to read the rest:
    http://blog.oup.com/2015/09/patients-battle-for-justice/


     
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  2. Effi

    Effi Senior Member

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    :ninja:
    :thumbsup:
     
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  3. Simon

    Simon

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    For me, this is the key point.
     
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  4. halcyon

    halcyon Senior Member

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    Strongly agree with his conclusion and suggestion to bring back Ramsay's work. Strongly disagree with his assertion that the 1988 CDC CFS criteria renamed ME to CFS. The term ME does not even appear in that paper.
     
  5. Sidereal

    Sidereal Senior Member

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    Ramsay's ME case definition is still the gold standard to my mind because it captures the essence of this disease instead of just listing a bunch of subjective criteria like a Chinese takeout menu. I don't see why we need all these pointless American and international committees who keep trying - and failing miserably - to come up with a better one.
     
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  6. Bob

    Bob

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    But, in effect, ME was converted to CFS. I think that's the point he's making.
     
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  7. Sean

    Sean Senior Member

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    It is a little scary sometimes how right he got it, so early on, and just how much he has been ignored since by the medical establishment.
     
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  8. Scarecrow

    Scarecrow Annie Gsampel

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    The CFS pages on the CDC website used to state that ME was a different condition. I can't find it today - the page may have been revised.
     
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  9. halcyon

    halcyon Senior Member

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    It was on their old CME page. It said:
     
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  10. Effi

    Effi Senior Member

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    I went back to read the Ramsay case definition yesterday and what you're saying is exactly what I thought. It's spot on! I wonder what would've happened if they'd called it Ramsay's disease and focused all funds on researching the actual disease process, instead of making up new names and new definitions and getting totally derailed by the psychobabblers. Benefit of hindsight?
     
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  11. sarah darwins

    sarah darwins I told you I was ill

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    What a great idea. Is it too late? How many arguments would that have saved?
     
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  12. Effi

    Effi Senior Member

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    I'm counting the money as we speak... ;) :depressed:
     
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  13. Snowdrop

    Snowdrop Rebel without a biscuit

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    From an old post in the IoM thread. I really do like the idea of calling this Ramsay's Disease. It solves so many problems. Fatigue clinics will have more difficulty making ridiculous treatment claims and confusing the public.
     
  14. Sidereal

    Sidereal Senior Member

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    I am against all trivial-sounding descriptive names like CFS or SEID. Too open to psychobabble quackery.
     
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  15. Denise

    Denise Senior Member

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    The World Health Organization has a page on naming diseases.
    Among other things it advises against the use of people's names when naming a disease.

    Terms that should be avoided in disease names include geographic locations (e.g. Middle East Respiratory Syndrome, Spanish Flu, Rift Valley fever), people’s names (e.g. Creutzfeldt-Jakob disease, Chagas disease), species of animal or food (e.g. swine flu, bird flu, monkey pox), cultural, population, industry or occupational references (e.g. legionnaires), and terms that incite undue fear (e.g. unknown, fatal, epidemic)." http://www.who.int/mediacentre/news/notes/2015/naming-new-diseases/en/"
     
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  16. Effi

    Effi Senior Member

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  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    I don't much care what Who wants in that regard. They don't have to deal with all the naming shit that goes on with cfs.
     
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  18. halcyon

    halcyon Senior Member

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    As always we are perpetually tripping over the elephant in the room. What are we talking about, ME or CFS? I really don't see any rational reason for renaming ME to something else until there is convincing evidence that the name does not reflect the underlying etiology. Renaming ME accomplishes nothing.

    CFS is of course a terrible name and I think everyone agrees that it should be changed, though if you read the 1988 CDC paper the name does perfectly reflect the framework they were trying to create. Clearly the CDC/NCHS and the IOM could not justify renaming CFS to ME, for good reason. The advocacy effort from a few years back to push CFS into G93 was bizarre. As the CDC points out, there is nothing neurological about the CFS case definition.

    I'm still puzzled by what the IOM did. They said CFS and ME are distinct, so therefore CFS can't be ME. But somehow CFS and ME can both be SEID.
     
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  19. Snowdrop

    Snowdrop Rebel without a biscuit

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    Naming the illness that eventually gets a biomarker for all the symptom's found in criteria like the international or Canadian ones as Ramsay's disease puts the whole business outside of the medical communities hands in terms of defining what it means. Our illness was defined quite accurately long ago. I don't need a name that tries to capture the functional aspect I'd really prefer to identify outside that whole arena.

    It also stops immediately the clinics that sprout up with cures for chronic fatigue saying that ME is the same thing. They could try and say that now Ramsay's is the same but as it has not been used that way before they'll have a lot of work to sell that and it might just backfire as it would cause people to dig deeper at that point to find out what's what.

    That's not particularly clearly stated sorry. Diseases in fact do go through name changes as the understanding develops--this is where I'd like to end up. Not that anybody with the power to change it will much care what I think.
     
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  20. msf

    msf Senior Member

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    We should be asking for an apology from the CDC too.
     
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