PAUSE-REVIEW-REFLECT: towards a bigger picture? [revised version]

Still looking for that RESET button…

October 2017: this was a revised version of my original post in January (paragraph entitled “Lessons?” rewritten to clarify the issues raised) + I have also now updated it to include the unexpected decision in September by the UK’s National Institute for Health and Care Excellence (NICE) to fully review and update the guidelines for diagnosis and treatment of CFS/ME (sic).

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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 society“. However, my main focus has been on issues facing the international community of people who live with the illness myalgic encephalomyelitis (ME) – sometimes also conflated unhelpfully 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 (how little has changed). 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 have been 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.

Changes 

My husband and I have been planning for some time to investigate the possibility of living in a warmer climate (see my post “Ice Cream and Hypothermia” for why that is). We are now at the stage where our combined age and health issues mean that we need to begin this experiment very soon. Having laid some of the groundwork over the last year, I now need to direct my already limited resources on making the change and so I will be unable to continue my close involvement in ME advocacy work.

I will not be giving up my work completely and there may still be more blog posts in the future. I will continue to monitor events and progress relating to the illness and I intend to keep open the channels of communication which I have established with other advocates in the international ME community and which I value greatly.

Further updates on the main topics featured in this blog 

I have covered a number of different topics here. You can see them in the list of “Categories” by scrolling down the right-hand sidebar. Overall, I have written about three 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).
2. The PACE Trial controversy: this category contains the greatest number of posts, partly as a result of collaboration with my friend and colleague, academic and journalist David Tuller. My work is about the process relating to Freedom of Information requests for data from the trial. Due process is a vital component of any functioning democracy (and with the shifting tectonic plates of the new geopolitical climate, something which will need increased scrutiny and protection in the foreseeable future) which is why I have explored it here. David has written extensively about the flawed science behind PACE; Vincent Racaniello at Columbia University, NYC, hosts some of David’s work on PACE in a series of posts on Virology Blog.
3. 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 and I will continue to remain involved in it (see further posts in the Karina Hansen category). There are ongoing public updates in these Facebook groups – Karina-sagen (Danish/English) and The ME Global Chronicle (English)

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REVIEW 

In August 2012, I wrote this in my first post on the “Secret Files”:

My opinion is that there are two areas where action is needed: first would be a high profile, carefully-managed and sustained media campaign to address government policy issues and reverse the mostly negative image of ME … patients. Secondly, consideration should be given to the viability of legal action on behalf of ME … patients. This is an extremely complex area with almost no legal precedent that I have been able find so far. I have my own views on both media and legal issues but, to have any chance of success, both campaigns would need enormous energy, commitment, generous funding and – above all – considerable professional expertise.

Much has happened since I wrote that post but the overall situation for most patients in the international ME community has changed very little – and this has been the case for decades.

• Media – I discussed this in The Secret Files Unwrapped: Part 1 and, in November 2016, I wrote a lengthy Facebook post which I had intended to formalize into a blog post here but never managed to complete the necessary editing. The Facebook post (and the comments beneath it) set out a more detailed discussion of the continuing absence of a large-scale, reactive/proactive media infrastructure for ME advocacy in the UK and the consequences of that absence. The post can be viewed here.
• Legal – from a legal (and medical) perspective in the UK, the NICE guidance has remained one of the biggest obstacles to progress. As things stand, the guidance provides a substantial defence against any legal action which might be initiated by ME patients who have been harmed by undertaking treatments recommended in the guidance, such as Graded Exercise Therapy or Cognitive Behavioural Therapy. An attempt in 2009 at securing a judicial review of the guidance failed disastrously.

I have been urging for some time that the ME community should be lobbying for an expedited review of the NICE guidance as a priority, although others have been less enthusiastic. However, NICE recently announced that there will be a decision later this year on whether or not a full review of the guidance should be undertaken.

(UPDATE October 2017: it was announced last month that NICE WILL undertake a full review of the guidelines, contrary to the decision expected by most stakeholders).

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REFLECT

I had planned to finalize a post exploring the legal landscape for ME patients in the UK as I have since done more work on the topic. However, current circumstances mean that this will not happen in the foreseeable future.  And, as I observed in a comment in the Facebook post, “there is also the fact that my experience over the last few years suggests that advice from experts is frequently not welcome.” I have also heard others describe similar experiences.

It would seem that my innocent remark from August 2012 in the inaugural “Secret Files” post that “to have any chance of success, both campaigns [ie. media and legal] would need…..considerable professional expertise” was uncomfortably accurate both in reflecting on, and predicting, continuing roadblocks to progress.

I would like to be able to say that my experience with the ME advocacy community has been a positive and edifying one but this has not always been the case. In some instances, the community agenda appears to be set by a fractious, clique-driven culture which is surprisingly resistant to expert advice. This resistance seems to be founded on a conviction that if the requested advice doesn’t chime with accepted community wisdom then it must be without merit and those offering it should be marginalized.

This closed mindset results in a huge loss of knowledge and experience which could be valuable to the broader community. More worryingly, the inevitable consequence of this approach is the continuing failure by the community to get its message across where it is most needed ie. outside the ME echo chambers and into the so-called “corridors of power”. Privately-funded scientific research is making great strides but until there is a universal recognition of ME (which must encompass both the disease itself and its shocking history) by those who walk those corridors, real progress will continue to be painfully slow.

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Lessons? 

Of course, it is much easier to criticize the work of others than to concentrate personal efforts towards making genuine progress. Nevertheless, even a cursory study of the history of ME (and “CFS”) clearly demonstrates two continuing obstacles to that progress:

1. The international advocacy community is up against a politically-generated anti-ME (and “CFS”) culture which is far more strident than might be considered rational. This is particularly evident in the disproportionate attacks on a disempowered and vulnerable patient group and the extraordinarily rabid defence of the status quo (ie. the psychosocial, rather than biomedical, approach to treatment).
2. The second (and more challenging) obstacle is that the ME community needs to acknowledge that, whatever we have been doing in recent decades to dismantle the roadblocks, our achievements have been limited.  A different approach is therefore required, one based on on a brutally honest evaluation of our history, and a professional assessment of what is needed to change perceptions at every level.

Although I am stepping back from my ME research and advocacy work (see above), I continue to monitor events within the ME community. It is deeply frustrating and disheartening to see the same mistakes being endlessly repeated because of our collective failure to address these issues.

The PACE Trial provides a current example of the main problem. The trial has been thoroughly discredited. Unfortunately, because we do not have an established media platform* from which to disseminate and support that message, few people outside the ME community are even aware of that fact. Moreover, even amongst those who are aware of it, many are reluctant to accept it because of the systematic reputational damage to the ME community which has accumulated over many years and which continues to undermine our credibility, particularly in the UK.

THE BIGGER PICTURE

In February 2015, I wrote this in my post “The IOM: Death by Acronym and Epic Media Fail“:

Whatever happens next is certainly too late for the millions of [ME] 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. That sucks.

The exhortation to “speak truth to power” has become a commonly used slogan. The actual use of this concept to achieve real results is a complicated and nuanced process, especially if those doing the speaking are themselves without power. The heartbreaking patient testimony at the US Department of Health and Human Services’s CFSAC meetings over the years bears witness to this only too well.

The best methods of addressing this problem are frequently counter-intuitive. That is why any community seeking to facilitate meaningful change must ensure that it is making optimum use of all its resources and listening to expert advice. Only then can its members reflect on lessons learned and begin devising appropriate strategies for dismantling those roadblocks and moving towards the bigger picture.

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*See my comments below in response to Barbara McMullen for more detail on how that could be achieved.