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Welcome to Law and Health

June 7, 2019

This is a new “WELCOME” page which I finally got round to setting up in June 2019. It is a “sticky” post so will remain as the front page of the site.

Thank you for visiting this site. For new visitors, this post provides is a summary of my research and advocacy work and where to find information in this blog.

I cover a number of different topics and this is reflected in the sub-heading of this blog Law and health; due process and civil society. However, much of my research has been focused on issues facing the international community of people who live with the disease myalgic encephalomyelitis (ME) – sometimes conflated incorrectly with the condition “chronic fatigue syndrome/CFS”.

I have lived with ME since 1981 (possibly longer) and began to learn about its history and pathology thereafter, although I wasn’t formally diagnosed until 1989. In 2009, I started increasing the scope and range of my research online and in 2012 I set up this blog in order to publish my work on the so-called “Secret Files on ME“.

Starting this blog was not a planned decision but rather a rapid response to some misinformation about the “Secret Files” which was circulating online. Since then, I have used it as a platform to explore and publish more information about a variety of topics. As is the case for all advocates who themselves live with ME, the amount of work I am able to achieve has been severely restricted by the illness.

For more detail about my qualifications and experience see the About section of this blog.

Updates

I try to keep this site updated but the pace of change is rapid and, inevitably, I can’t always keep up. If you notice something like a broken link or an outdated fact, please contact me either via Facebook private message/Twitter direct message or at v.eliot-smith@qmul.ac.uk.

 

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MAIN TOPICS FEATURED IN THIS BLOG 

I have covered a number of different topics. You can see them in the list of “Categories” by scrolling down the right-hand sidebar. In particular, I have written about five main subjects:

  1. The Secret Files on ME
    This is where the blog started. I completed my work on getting the files opened up and made publicly available. You can read the full story in the posts in that category. You can download the actual files from The Secret Files Unwrapped Part 1: the importance of fair and accurate records and The Secret Files Unwrapped Part 2: Control, not Collaboration (one file per post).
    A full list of posts can be found in The Secret Files category.
  2. Karina Hansen, “Prisoner of Denmark”
    Karina is a young Danish woman, diagnosed with ME, who was removed forcibly from her family home in 2013. She was relocated in a “neurocenter” as a de facto psychiatric patient against her wishes and those of her family. She remained there for three and a half years. In the early part of 2016, I wrote a series of articles examining her story. In October 2016, she was allowed to return home with her family. Her ordeal may not be over yet. The trauma of her experience, and that of her family, is likely to continue for the foreseeable future.
    The full list of posts can viewed in the Karina Hansen category.
  3. The PACE Trial controversy
    This category contains the greatest number of posts, largely as a result of collaboration with my friend and colleague, academic and journalist David Tuller. My work is about the process (such as Freedom of Information requests for information about the trial) rather than the science.
    Due process is a vital component of any functioning democracy. The currently shifting tectonic plates of a rapidly changing geopolitical climate serve to create widespread instability and insecurity. In such an uncertain world, due process becomes even more vital in civil society by requiring transparency and scrutiny of executive action and in maintaining the protection of individual rights.
    The full list of posts can be found in the PACE Trial category.
  4. “Changing the narrative”
    This series of posts concerns the development of a more effective strategic communications and media platform for the ME community. It is a relatively recent addition and I will expand on it when I am able.
    The full list of posts can be viewed in the Strategic communications and the media category.
  5. Open Justice
    This category contains academic posts on specific legal issues, not necessarily directly related to ME.
    The list can be viewed in the Open Justice category.

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This is a quote from my 2015 post The Secret Files Unwrapped: part 2 – control, not collaboration. Despite increased advocacy efforts, there has been too little significant progress in the acceptance, diagnosis or treatment of ME since then.

I would argue that ME patients are now in a unique category. I can think of no other disease in the modern age which, having initially been regarded as hysterical or psychosomatic in origin, has remained stigmatised and untreatable for so long. Anecdotally speaking, diseases such as MS, polio, epilepsy and HIV/AIDS were all dismissed by clinicians and politicians early on in their development; all have since progressed to a stage of diagnostic near-certainty and  officially-sanctioned treatments.

In the case of HIV/AIDS, this took about twenty years. By contrast, ME was first documented eighty years ago but patients are still not routinely recognised as having a “real” illness and there is still no effective treatment. Funding is derisory or non-existent. This must qualify it for a unique status which justifies special pleading on behalf of its patients. This is not to detract from the interests of other serious illnesses; it is merely to restore ME to its rightful place in that group, as it was sixty years ago.

 

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