TEN YEARS ON: “Somewhere Towards the End”*

*“Somewhere Towards the End” is the title of a memoir by one of the great writers and publishers of the twentieth century, Diana Athill. I have borrowed the title as it sums up the theme of this post.

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I have lived with the illness myalgic encephalomyelitis/ME since 1981, in varying degrees of severity. I am a barrister, academic and former PR executive. For more information see About.

FOR MORE information about this blog and its contents see the WELCOME TO LAW AND HEALTH post. 

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Ten years of the blog

Last month, August 2022, this blog reached its tenth anniversary. Today’s post brings the total number of published posts over the last ten years to 77, gaining 155,000 views from 160 countries.

I published my first post here on 21 August 2012, between the end of the London 2012 Summer Olympic Games and the start of the Paralympic Games (which I attended with the assistance of a friend).

London 2012 Paralympic Games

I first became ill with ME in 1981 (though not diagnosed until 1989) and I began to learn about its history and pathology from then onwards.

From 2008, with the benefit of social media and other online resources, I increased the range and scope of my research. In 2012, I set up this blog in order to publish my work on the so-called “Secret Files on ME“.

Over the next ten years, I documented much of my research and advocacy work here. I have covered many different aspects of “law and health: due process and civil society” – the above sub-title of the blog – but with a particular emphasis on ME-related matters.

In recent years, I have focused on the urgent need by the UK’s ME community for the development of a professional media and communications strategy, with the ultimate aim of securing a public inquiry into the shocking treatment and neglect of ME patients, for example – see this post from March 2022 A manifesto for change: from strategy to inquiry.

I have also undertaken other work, conducted privately, in response to requests for advice/assistance from individuals and groups within the international ME community.

I was a contributor to the film The Tangled Story of “ME/CFS”. The film explains some of the complex history and politics surrounding the illness (1 hour 11 mins long).

Financial transparency and conflicts of interest

• All my work is undertaken on a pro bono basis.
• I cover all costs incurred out of my own pocket.
• My work generates no income or financial contributions. In 2018, I accepted two tickets for a conference as a thank you for some work I did but decided that I would not accept anything thereafter.
• I remain independent of any organisation or group in order to avoid any conflicts of interest.

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In a 2015 blog post, I wrote this:

Whatever happens next is certainly too late for the millions of patients who have already died during the last eighty years. Most of them never had their illness validated nor were they treated with respect and compassion in their lifetimes. And what assurance is there that anything concrete will happen during the next thirty years? Another generation of us – including me – will have died before then.

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The thesis of my work

It took some time to develop the thesis of my work but by 2019, after four decades of living with ME and studying its associated history and politics, I had formulated it in these terms. This is the up-to-date version:

THE THESIS

ME has been documented for nearly a hundred years. Over the last fifty years, the pace of progress for the international ME community has been excruciatingly slow.

A toxic culture has evolved around the illness which has poisoned public perception of the community and blocked urgently needed advances in recognition, research and the provision of health/social care. However painful it is, we need to examine in detail ALL of the many different reasons why this has happened and what needs to be done to address the underlying causes. Inevitably, this involves the difficult task of challenging some long-held ideas, beliefs and practices.

In the UK, change will only be secured via a top-down approach, led by proactive and unified (though probably not united) ME institutions. If undertaken with the right professional advice, and with the benefit of appropriate knowledge, skills and experience, then the groundwork for a complete cultural reframing of the illness can be established. This will, in turn, lead to appropriate resources at all levels finally being provided for the ME community on a permanent basis.

However, to achieve this, we need to adopt a far more assertive and robust strategy in order to cultivate a more positive and visible public presence. The current “whack-a-mole” approach to addressing misleading media coverage, shoddy research publications and negligent or actively harmful healthcare provision simply looks weak and defensive.

Recent developments in the UK (which are currently moving forward slowly but surely, in true civil service fashion) are to be welcomed. However, they will take some time to bring about meaningful change for patients on a day-to-day basis.

Expert assistance is required to develop a high-level strategic and media plan, with a view to securing a statutory public inquiry into the history and politics behind the decades of appalling treatment of ME patients.

A review and redistribution of community resources will be required to achieve this.

As I have said repeatedly from 2019 onwards:

“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.”

With this thesis in mind, I began writing about how the ME community could bring about the necessary changes. In January 2019, I published the first post in my series “Changing the Narrative” which set out the pathways by which this could be done.

I have continued to write about my proposals for how the ME community should address the problems identified above (eg. see here and here) but my work has mostly passed without public acknowledgement from the ME organisations in the UK (although a couple of my suggestions have recently begun to manifest themselves in very watered-down versions).

The cost of this work

Research and advocacy work comes with significant personal costs, particularly for those who themselves live with ME. These costs entail physical, emotional and financial consequences. These must be weighed against whatever community benefits may or may not flow from that work.

My proposals have been welcomed by some but ignored and marginalised by others, particularly those with the most influence over the ME community in the UK. My work has been largely unacknowledged therefore its impact has been low.

I do not carry out advocacy work because it’s enjoyable (it’s not). Nor do I do it for personal fulfilment or recognition, although recognition is necessary if results are to be achieved. I have persisted with it in the hope that it will facilitate more rapid improvements in the day-to-day lives of patients by applying my own particular skills, knowledge and experience in researching the relevant materials, analysing them and then proposing a viable route towards real progress.

Keeping up with developments in the international ME community, plus carrying out all the necessary research in order to be able to continue writing and providing advice in a responsible manner, is a full-time commitment. Living with ME, as I do, that’s a daily challenge – and has been for some years.

I have deliberately preserved my independence and I am not affiliated to any group or organisation. This means that I have no platform or resources other than here on this blog. In isolation, and without wider institutional engagement, my contributions can achieve little.

At this point, I have reached the inevitable conclusion that my efforts are of minimal value in bringing forward positive change for the ME community therefore the personal costs of continuing my work can no longer be justified.

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Absence of leadership, lack of trust and zero strategy

In my post from July 2022, “The Poisoned Well: a history of ME in 20 tweets”, I set out a brief history of ME – how it came to be dominated by the toxic influence of what I term the “psychiatric lobby” and how that influence became one of the most insurmountable obstacles to progress for the international ME community.

However, this is only one part of the story. There is another component to that story which I have called “Absence of leadership, lack of trust and zero strategy“.

For anyone who wants to read further, I have created a document containing a more detailed explanation of that second component (including a re-examination of the 2021 NICE guideline update process).

To read more, click on TEN YEARS ON – explanatory note (2000-word pdf document).

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Somewhere towards the end…..

I will leave the blog here as a resource for as long as it retains any practical use or relevance to the work of ME advocates worldwide. However, without wider recognition, support and institutional engagement, the personal cost of continuing my work on behalf of the patient community is no longer sustainable.

The sole purpose of my work has been to facilitate meaningful change at scale for the ME community. That purpose has been on life support for some time.

At this point, in September 2022, my work is approaching “somewhere towards the end”.

As generations of advocates before me have learned, enough is enough. It’s time to step back. 

Thank you to the many people who have assisted and supported me in my work, in particular, my husband, Robin Callender Smith and Robert Courtney, ME patient-advocate who died prematurely in 2018.

Thank you for reading this blog.

Moonrise over the City

Photo credits: Valerie Eliot Smith