Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Bio-ethics and ME tweet chat on April 7th at 8:30 PM Eastern time (5:30 Pt)

Discussion in 'Upcoming ME/CFS Events' started by Kati, Mar 25, 2014.

  1. Kati

    Kati Patient in training

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    Best wishes, Peggy-Sue.

    The good news is you don't have to do anything you don't want to do, or that you can't do.
     
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  2. SOC

    SOC

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    That depends on where you live. The illness outbreak in Lake Tahoe was named (albeit stupidly) Chronic Fatigue Syndrome. That's when the stupid name started. The illness outbreak was not defined by "various psychiatrists".

    The use of the word 'syndrome' is not derogatory or demeaning. It's a basic medical word with a specific meaning unrelated to judgement. Plenty of serious illnesses have 'syndrome' in their name -- Down Syndrome, Sjogren's Syndrome, Acquired Immune Deficiency Syndrome.
     
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  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Right. The definition doesn't describe the illness, but you can't invent any kind of illness or syndrome by writing a definition. Patient have whatever they have, and the unsuitability of the definition or name is a separate issue.
     
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  4. Kati

    Kati Patient in training

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    There is a lot of work to be done. Physicians and other health care professionals who are not ME literate may already have made their minds. This 1 hour of social media is not going to start a revolution. It barely initiated a discussion with just a few of them.

    I think the message here is, for patients who cannot go out on the streets and protest and fight for health care, for a proper name and for adequate disability benefits, we have another tool to reach out. It's called twitter.

    I just wanted to put it out there, just in case it's your cup of tea, that's all.
     
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  5. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    And this is the normal use of the word "syndrome": a collection of signs and symptoms that is logically and coherently connected such that it describes one clinical entity
     
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  6. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    It's customary at the beginning of a tweet chat for everyone to introduce themselves.

    It's possible to change the times of the transcript to skip most of this, and I have done so here. That skips seeing who is who, but it gets to the substantive comments more quickly.
     
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