Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Excellent "openDemocracy" ME Article

Discussion in 'General ME/CFS News' started by Old Bones, Dec 19, 2016.

  1. Old Bones

    Old Bones Senior Member

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    Nothing in this article will be new to most PR members. However, it is an excellent summary which accurately describes the impact of the illness, particularly for those most severely affected, and the political neglect.

    "Severe ME left me in a world of pain and darkness. 26 years on, why is it still so poorly understood?
    NAOMI WHITTINGHAM 19 December 2016

    We need to draw attention not only to the illness itself, but the political neglect that allows it to continue destroying lives."

    Read more at:

    https://www.opendemocracy.net/naomi...26-years-on-why-is-it-still-poorly-understood

    No Comments so far, but the website does provide this opportunity.
     
    mango, *GG*, Zombie_Lurker and 29 others like this.
  2. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    Outstanding article. I hope it will be widely shared.
     
    mango, Cinders66, Daisymay and 6 others like this.
  3. Molly98

    Molly98 Senior Member

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    fantastic, one of the best I have read :thumbsup::thumbsup::thumbsup:
     
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  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I especially like how she uses "ME" only, save the reference to cfs.
     
  5. Barry53

    Barry53 Senior Member

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    Supremely good and poignant article. It really does make you wonder what it will take to make the powers that be sit up and take notice? It should be required reading for MPs, the medical profession/students, etc. Broader exposure of this article might be very helpful.
     
  6. Tom Kindlon

    Tom Kindlon Senior Member

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  7. SamanthaJ

    SamanthaJ Senior Member

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    Brilliant article that deserves to be widely read. So many people don't even realise severe ME exists, as media coverage rarely acknowledges it, and you're not likely to just meet someone who's that ill. She explains both severe ME and the injustice so well, as well as explaining research in an accessible way. A good article to refer non-ME people to? Most people could not continue to be indifferent after reading this.
     
  8. Tom Kindlon

    Tom Kindlon Senior Member

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  9. Barry53

    Barry53 Senior Member

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    I just read this Telegraph article by Naomi from Aug 2014. It is not as if there is any excuse these days for the establishment to claim innocent ignorance; it is culpable ignorance.

    http://www.telegraph.co.uk/women/womens-health/11018709/What-its-like-to-live-with-severe-ME.html

    We all know there is a crime in the moral sense, but surely there must be crime in the legal sense too? If an ordinary person were to cause another such emotional and physical harm, due to incompetence, wanton mistreatment, character assassination, etc, then surely they would end up in prison. Let alone doing it to 100s of 1000s.
     
  10. alex3619

    alex3619 Senior Member

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    The technical term seems to be medical ineptitude, the deliberate ignorance of facts when they could have acted. Its an extremely widespread problem, and raises the question as to how much of medicine many doctors are also inept about? We trust these people with our health.
     
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  11. alex3619

    alex3619 Senior Member

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    This article is a nice summation of many of the problems we face today.
     
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  12. Daisymay

    Daisymay Senior Member

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    "Ineptitude is a lack of skill, ability, or competence. A doctor would prove his ineptitude at practicing medicine if he mistakenly removed a patient's spleen instead of his kidney. Ineptitude and incompetence are synonyms to describe people who have absolutely no idea what they're doing."
    ineptitude - Dictionary Definition : Vocabulary.com
    https://www.vocabulary.com/dictionary/ineptitude

    Though with many doctors it may be ineptitude (which is itself completely unacceptable) as we all know there are those who are fully aware this is a serious physical disease but persist with their agenda that it is a MUS. That is not ineptitude.
     
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  13. alex3619

    alex3619 Senior Member

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    How we describe the core proponents of psychobabble may not apply to the wider medical audience. I think there are separate issues involved. Also I lost my reference to an academic definition of "medical ineptitude" which is not quite synonymous with ineptitude in medical matters, at least in the literature I looked at early this year or last year.

    The issue is that huge numbers of doctors do NOT check the scientific credibility of what they support. They talk about evidence based medicine, but most who do that seem to be about looking up rubber stamped conclusions, and not looking at the evidence or scientific methodology, or lack thereof. When a doctor is aware, or has been told, that there is a problem and there is published scientific evidence this is real, it is an ethical, moral and scientific requirement that they establish if this is right. Sadly, its rare that this happens, but not unknown.

    I am mindful of the history of peptic ulcers and H. pylori. It took many years for doctors to be aware of the science, and they largely picked that up from newspapers. It was patients who were demanding the newspapers run the story. I blogged about this.

    H. pylori was ignored far longer than ME. FAR longer. The recent history of ulcers and H. pylori that began in 1983 or so was 108 years or so after it was first identified. Inconvenient research, or research that seems wild, or research published in obscure places, can easily be ignored or overlooked. This does give reasons for why doctors fail, particularly in the modern medical climate with almost no time allowed for proper skills development and personal research, but it does not absolve them of responsibility.
     
  14. Naomi10

    Naomi10

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    Thank you for all your comments! It's good to know that the article was well received. It spent a number of days in the site's Most Popular list, so hopefully will have reached a wide audience.
     
    SamanthaJ, Hilary, Old Bones and 4 others like this.
  15. Naomi10

    Naomi10

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  16. Sasha

    Sasha Fine, thank you

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    Well done, @Naomi10 - superb article! :thumbsup::thumbsup::thumbsup:

    Really terrific piece of advocacy.
     

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