Valerie Eliot-Smith

“Ice Cream & Hypothermia” Revisited + A Chilling NICE Consultation Process

Valerie Eliot-Smith

By Valerie Eliot Smith in Law and Health: due process and civil society.   Note: this post runs at 2270 words. It falls naturally into two sections of approximately the same length.  ************** The blog has been rather quiet for a while. While my day-to-day work does not stop, my ability to write blog posts is […]

Welcome To Law And Health

Valerie Eliot-Smith

  By Valerie Eliot Smith in Law and Health.   “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019  ***************************** Note: this blog works across all devices but can be viewed most easily on a computer or tablet. Thank you for visiting […]

Welcome To Law And Health

Valerie Eliot-Smith

  By Valerie Eliot Smith in Law And Health.   “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019  ***************************** Note: this blog works across all devices but can be viewed most easily on a computer or tablet. Thank you for visiting […]

COVID-19, NICE And ME: Towards Litigation ?

Valerie Eliot-Smith

  By Valerie Eliot Smith   On 18 March 2020, I tweeted this: “#coronavirus is ongoing international emergency. #MyalgicEncephalomyelitis has been international crisis/scandal for decades. In US #ME continues to be marginalised by @CDCgov  & @NIH. Nevertheless #ME advocacy must continue as #ME patients everywhere remain vulnerable + invisible.”    Since that tweet, the COVID-19 crisis has continued to escalate worldwide. Given that the disease myalgic encephalomyelitis (ME) often has an […]

Changing The Narrative #4: The QMUL Judgment Explained And Some Observations On Feedback

Valerie Eliot-Smith

      By Valerie Eliot Smith.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  “Institutional abuse is the maltreatment of a person…….from a system of power.” “Changing the narrative” was originally planned as a series of three posts which explored several different aspects relating to the […]

Changing The Narrative #3: Due Process, Engagement And A Pathway (Magic Bullet Not Included)

Valerie Eliot-Smith

  By Valerie Eliot Smith. The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  ******************** Since I started publishing this series of posts, I have received mixed feedback. I’m grateful to those who have provided positive and constructive comments. There have also been some less helpful reactions […]

Changing The Narrative #2: Warring Factions, Divide & Rule And Death Threats

Valerie Eliot-Smith

    By Valerie Eliot Smith.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  Introduction This is the second part of my series of posts on changing the narrative around the illness myalgic encephalomyelitis (ME). The first part of this series can be found at Changing the […]

Changing The Narrative #1: Exploring A New Approach To Strategic Communications In The ME Community

Valerie Eliot-Smith

    By Valerie Eliot Smith in valarieeliotsmith.com.   The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.  IntroductionI strted writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only to then abandon them because the subject-matter is complex […]

Karina Hansen News + A Battle With NICE (The UK’s National Institute For Health And Care Excellence)

Valerie Eliot-Smith

    By Valerie Eliot-Smith in Varlerieeliotsmith.com. [NOTE: a brief personal update Last year I went to live abroad. I wrote about this change in my February 2017 post PAUSE-REVIEW-REFLECT: towards a bigger picture? [revised version . As of September 2018, I am now UK-based again. While I was away, I continued my work assisting and advising members of the […]

Karina Hansen 8 (Updated): The Aftermath Continues

Valerie Eliot-Smith

  By Valerie Eliot-Smith.   GOOD NEWS: I originally published this post in June 2018. I am re-publishing it today (10 August) as there has been an encouraging development since then. Thank you to Bente Stenfalk (see below) for the updated information. Original post follows the update. UPDATE August 2018 On 9 July 2018, psychiatrist Dr Charlotte Emborg […]

Karina Hansen 8: The Aftermath Continues

Valerie Eliot-Smith

  By Valerie Eliot Smith.   Regular readers of this blog will already be familiar with Karina Hansen’s horrifying story (as detailed in my series of posts) and with the often appalling treatment of myalgic encephalomyelitis (ME) patients generally. For new readers, and those needing a more detailed reminder of her story, there is a full summary at the […]

The IOM: Death by Acronym And Epic Media Fail

Valerie Eliot-Smith

      By Valerie Eliot-Smith.   Background The illness myalgic encephalomyelitis (ME) has probably existed for centuries. It has been documented since an occurrence in Los Angeles, California in 1934, followed by countless other similar events. A major outbreak at the Royal Free Hospital in London, UK in 1955 led to the coining of the term “myalgic […]

Pause-Review-Reflect: Towards A Bigger Picture ?

Valerie

    An ME blog by Valerie Eliot-Smith.   PAUSE This year will bring some changes which mean I need to step back from my research and advocacy work. This work has covered a number of different topics and this is reflected in the sub-heading of this blog “Law and health; due process and civil […]

Karina Hansen 7: Update And Urgent Appeal

Karina Hansen

  A Blog by Valerie Eliot-Smith.   The current situation (December 2016) On 17 October 2016, after three and a half years of involuntary detention as a de facto psychiatric patient in a Danish clinic, Karina Hansen (pictured above left from her schooldays) finally returned to her family home from which she had been forcibly removed […]

Karina Hansen 3: Update March 2016

Valerie

  By Valerie Eliot-Smith.   This update follows on from my previous post Karina Hansen 2: the Ghost in the Room. For the full background to this story, please refer to that post. A brief re-cap…..   Karina (pictured above) was diagnosed with severe Myalgic Encephalomyelitis (ME) in 2010. The diagnosis was disputed and, as […]

Karina Hansen 2: The Ghost In The Room

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  A report by Valerie Eliot-Smith.   January 2016. A young woman sits in a wheelchair in a Danish rehabilitation centre. She mumbles incomprehensibly to herself from time to time but is otherwise unresponsive. With her is a close family member. She shows no signs of recognising him. Is this the fate of “Karina Hansen: […]

Queen Mary University Of London To Appeal Information Commissioner’s Decision On Disclosure Of PACE Trial Data

Valerie

    Story by Valerie Eliot-Smith. I have lived with the illness myalgic encephalomyelitis (ME) for nearly 35 years. The condition is also (misleadingly) known as “Chronic Fatigue Syndrome” and is therefore often referred to as “ME/CFS” or “CFS/ME”. For more information see “About“. I have previously written about the controversial PACE Trial (Principal Investigator: Professor Peter […]

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