Welcome to Law and Health

“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019

The 2021 film “The Tangled Story of ‘ME/CFS’” gives an account of the historical and political context of ME, as seen through the eyes of a range of expert researchers, clinicians and advocates. I was a contributor to this film.

To view the film (1 hour 10 minutes) go to this link.

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Thank you for visiting this site. It was created in August 2012. The date above, 7 June 2019, relates to when I set up this “Welcome” page.

This post provides a summary of my research and advocacy work and signposts where to find information in this blog. Recent posts are listed in the sidebar.

Please note that, as of September 2022, whilst I continue to follow events in the ME community, I rarely take on any new advocacy/assistance work.

Overview

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 2008, 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 details about my qualifications and experience, and the complex terminology behind “ME”, “CFS” and “ME/CFS”, see the About section of this blog.

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MAIN TOPICS FEATURED IN THIS BLOG 

I have covered a number of different topics. You can view the full list of “Categories” in the right-hand sidebar but these are the main ones:

1. Strategic communications and the media + “Changing the narrative”
   This series of posts considers the development of a more effective strategic communications and media platform for the ME community.
   The full list of posts can be viewed in the Strategic communications and the media category.
2. 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.
3. Limitation of Consent to Treatment form template with accompanying Guidance Notes
   Despite being first documented nearly a hundred years ago, ME has remained an illness which frequently causes severe tensions between patients and healthcare professionals. The purpose of the proposed Limitation of Consent form is to a) act as a memory aid during the appointment for the patient (or parent/guardian/carer) and b) provide written support for withdrawal of consent if they become concerned about the direction the appointment is taking.
   The post on this topic, with downloads of the template form and guidance notes, is at Limitation of Consent of Treatment: template form + Guidance Notes (with downloads)
4. The National Institute for Health and Care Excellence (NICE)
   NICE is the executive non-departmental public body of the Department of Health in England which publishes guidelines on health/social care-related issues. This category discusses how NICE features ME in its guidance (“CFS/ME” or “ME/CFS”, as it confusingly terms it). In particular, these posts provide critical analysis of the ME guideline revision process from 2017 to 2021. The previous guideline dated back to 2007.
   The full list of posts can be viewed in the National Institute for Health and Care Excellence category
5. 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. Starting in 2014, 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.
6. The PACE Trial controversy
   This category contains the greatest number of posts, largely as a result of my collaboration with academic/journalist Dr David Tuller. My work on this topic is mostly concerned with the process (such as Freedom of Information requests for information about the trial) rather than the science of the PACE trial.
   Due process is an essential component of any functioning democracy. It is a vital tool in civil society for requiring transparency, accountability 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.
7. Open Justice
   This category contains a range of posts on issues relating to open justice, including some academic articles. It contains ME-related posts and some which deal with other topics.
   The full list can be viewed in the Open Justice category.
8. Covid-19 and long Covid
   This is a selection of posts which refer to aspects of Covid-19 and associated issues.
   The full list can be found in the CoronaVirus category.

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This is a (slightly edited) 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. My views on how this can be addressed can be found in this post from March 2022 A manifesto for change: from strategy to inquiry and in the category Strategic communications and the media.

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 [nearly a hundred] years ago [ie. in 1934] 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. These factors must surely qualify it for a unique status which justifies the pleading of a special case on behalf of the patient community. 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 seventy years ago [ie. in 1956].