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activism

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  1. Andy
    Thread

    Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS, 2022, Lim Rogers

    Abstract This article examines the contestation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Lacking consistent diagnostic...
    Thread by: Andy, Mar 11, 2022, 11 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  2. Noir
    Thread

    UK: Long Covid protests calling for more research, Wed 9th March 2022

    Someone calling themselves Long Covid Patient Action Group UK on Twitter has announced protests calling for more research into long covid outside...
    Thread by: Noir, Feb 2, 2022, 9 replies, in forum: Advocacy Action Alerts
  3. Hutan
    Thread

    Bridget Mildon - patient advocate for Functional Neurological Disorders

    Bridget Mildon created FND Hope International, and is very active in supporting the concept of functional neurological disorders. She wrote about...
    Thread by: Hutan, Jul 11, 2021, 19 replies, in forum: Psychosomatic theories and treatments discussions
  4. Andy
    Thread

    Blog: "The Death Threat Myth Exposed", Jennie Spotila

    Last week, an old story was recounted to a new audience. During the March 30, 2021 NIH telebriefing with the ME/CFS community, Dr. Vicky...
    Thread by: Andy, Apr 6, 2021, 45 replies, in forum: General ME/CFS news
  5. Andy
    Thread

    Research survey: Young Disabled People’s Views and Experiences of Disability Activism across Europe

    Is your age within the range of 18 to 35? Do you identify as a disabled person? Do you currently live in a European State? Do you have experience...
    Thread by: Andy, Apr 5, 2021, 1 replies, in forum: General disability topics and advocacy
  6. rvallee
    Thread

    Recommendations From the Twitter Hashtag #DoctorsAreDickheads: Qualitative Analysis

    Recommendations From the Twitter Hashtag #DoctorsAreDickheads: Qualitative Analysis https://www.jmir.org/2020/10/e17595/ Background: The social...
    Thread by: rvallee, Nov 2, 2020, 0 replies, in forum: Other health news and research
  7. Andy
    Thread

    Genesis and dissemination of a controversial disease: chronic Lyme, 2020, Gocko et al

    Objectives: To describe the role of the internet and cognitive biases in the controversy surrounding chronic Lyme disease. The attribution of...
    Thread by: Andy, Oct 14, 2020, 14 replies, in forum: 'Conditions related to ME/CFS' news and research
  8. Andy
    Thread

    Lancet editor-in-chief calls for ‘activist’ journals

    But I thought activism was bad??? Academic journals must become more “activist” if they are to survive, seeking to “change the direction of...
    Thread by: Andy, Jan 17, 2020, 11 replies, in forum: Other health news and research
  9. Andy
    Thread

    Blog: BMJ Opinion: Tessa Richards: Should patient advocates adopt guerilla tactics?

    Activism and new ways of getting input from a much wider range of patients and communities are needed to advance patient and public partnership in...
    Thread by: Andy, Dec 2, 2019, 10 replies, in forum: General disability topics and advocacy
  10. Andy
    Thread

    MEAction editorial: "Inside/outside activism: Why we must shout in the streets and sit at the table."

    ..almost as soon as ACT UP formed, a group within ACT UP realized: it would not be enough to inform the world of our plight and put the people in...
    Thread by: Andy, Oct 5, 2019, 1 replies, in forum: General Advocacy Discussions
  11. Esther12
    Thread

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    Moderator note: Posts on this thread have come from three places, this thread and the following two threads. They have been copied or moved to...
    Thread by: Esther12, Jul 28, 2019, 179 replies, in forum: General Advocacy Discussions
  12. Andy
    Thread

    Psychology Today blog - The Dark Side of Social Media Activism in Science, 2019, S. Camarata

    Moved from this thread Thought this was posted here already but I can't find it. So why are Dr. Sharpe and other clinical-translation...
    Thread by: Andy, Jul 23, 2019, 97 replies, in forum: Psychosomatic news - ME/CFS and Long Covid
  13. daftasabrush
    Thread

    The actual views of "ME activists" are...

    After yet another round of news articles misrepresenting the views of "ME activists" can someone please point me at some actual views. Either...
    Thread by: daftasabrush, Mar 27, 2019, 11 replies, in forum: General Advocacy Discussions
  14. Snowdrop
    Thread

    Silence is Death-What the HIV activists taught us (Tidsskriftet) Norway March 2019

    A longish read. I skimmed through. An interesting quote from near the end: The activists questioned the gold standard of medical intervention...
    Thread by: Snowdrop, Mar 18, 2019, 6 replies, in forum: General disability topics and advocacy
  15. Sly Saint
    Thread

    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    Reuters: LONDON (Reuters) - The emails, tweets and blog posts in the “abuse” folder that Michael Sharpe keeps on his computer continue to pile up....
    Thread by: Sly Saint, Mar 13, 2019, 867 replies, in forum: Psychosomatic news - ME/CFS and Long Covid
  16. Andy
    Thread

    Proud Accessible Activism: The ME Debate Virtual Demonstration

    Throughout history, activism and campaigning have been a driving force for positive change across the world. From civil rights to LGBTQ rights and...
    Thread by: Andy, Feb 3, 2019, 19 replies, in forum: General Advocacy Discussions
  17. Andy
    Thread

    Are ME/CFS Patient Organizations “Militant”?, 2018, Blease and Geraghty

    Abstract Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim...
    Thread by: Andy, Jul 4, 2018, 54 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  18. Samuel
    Thread

    Strategic framework for activism with practical advice

    /Movement Action Plan/, by Bill Moyer. http://www.indybay.org/uploads/movement_action_plan.pdf excerpt: === STAGE TWO: PROVE THE FAILURE OF...
    Thread by: Samuel, Jun 7, 2018, 17 replies, in forum: Advocacy Projects and Campaigns
  19. Kalliope
    Thread

    The Body - Using Lessons from HIV Activism, People With CFS Fight for the #MillionsMissing

    The Body - The Complete HIV/AIDS Resource Journalist Olivia G. Ford Using Lessons From HIV Activism, People With Chronic Fatigue Syndrome Fight...
    Thread by: Kalliope, May 9, 2018, 5 replies, in forum: General ME/CFS news
  20. AR68
    Thread

    FoI request regarding an 'activist list' in the Sunday Times Magazine in May 2013

    I recently asked the Metropolitan Police Service about the existence of an 'activist list', alleged in an article by the late Michael Hanlon, that...
    Thread by: AR68, May 9, 2018, 55 replies, in forum: General ME/CFS news
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