The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.
I started 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 and contentious. Whilst I have written about the topic as part of many other posts, I have not published before now a series of posts which was devoted to this subject alone.
The question is this: how should the Myalgic Encephalomyelitis (ME) community in the UK address its reputational problems within the media environment and the wider political, medical and social context?
As regular readers of this blog know, I have lived with the illness ME, in varying degrees of severity, since 1981. The stigma attached to the illness and the treatment of many patients in most countries is shocking, despite occasional official platitudes purporting to demonstrate real concern about the situation. Sometimes these official pronouncements appear to be genuinely well-intentioned. In fact, they usually represent an unsupportable denial of the illness’s history and its profound effect on the lives of millions of patients worldwide.
The history of this illness – which has probably existed for centuries and been well-documented since the 1930’s – reveals a pattern of scandalous behaviour towards patients by the very agencies which should have been most alarmed at the recorded outbreaks in many parts of the world. It also exposes a chilling lack of respect and compassion for those who have lived with the illness for months, years or, in many cases, decades.
Changing the narrative
In the film“Unrest” , Jennifer Brea says: “You can disappear because someone is telling the wrong story about you.” Sadly, this is only too true – but it does not need to be the case. The status quo can be changed if the process of how to achieve that is better understood. Most of what I say here has been said before by various people at various times in various places – but perhaps not in quite the same way as I will express it here.
I have discussed this subject on a regular basis in many of my blog posts over the years and in debates on social media. What has become clear during those exchanges is that there is a very wide range of interpretations of what constitutes a media strategy and a fair amount of misunderstanding – not to mention disagreement – of how it might be undertaken. That is what needs to be addressed.
Because of its very nature, this is a topic which can only be explored on a country-specific basis. Despite the international reach of the internet, each geographical area still faces its own unique set of challenges when it comes to healthcare and related matters. However, some of the links in this post use references from other countries because the general principles remain the same, whatever the specific local considerations may be. This series of posts focuses on the situation in the UK.
What are my credentials?
It’s only fair that, as I’m holding myself out as someone who is qualified to express a view about this topic, that I explain what my credentials are. There is a brief reference in the About section of this blog (in addition to the summary of my legal career) which needs expanding:
“My background also includes experience in media relations, journalism…..” This half sentence is an extreme reduction of a number of years of experience, encompassing five years with an international PR consultancy, some ad hoc freelance journalism (including former membership of the Institute of Journalists) and, more recently, expert knowledge of media law/reputation management. I am not simply making this up as I go along.
The UK’s ME community urgently needs a complete overhaul of its communications strategy. As part of that, a media/reputation management plan should be put in place to head off further damage and generate a new and more accurate representation of the narrative surrounding both the illness itself and the patient community. This is absolutely essential and decades overdue, not only because of its obvious intrinsic benefits but also because, if done correctly, it will permeate through and create change in every area related to developing effective treatment for the illness and respectful treatment of patients.
Every successful campaign to raise awareness about any issue has sought and received high-level expert advice on how to go about it – for example, the highly successful breast cancer awareness movement. Increased public awareness of particular issues doesn’t just appear from nowhere; it is carefully orchestrated, funded and planned, often over many years. We know from looking at recent history that the right strategic approach can bring about positive changes in public perception of an illness and begin to marginalise its detractors (as opposed to it being the other way round, as is the case with ME at the moment).
If handled correctly (and I can’t emphasise that enough), the effects of such a campaign will filter through and begin to change attitudes towards investment in medical research, appropriate healthcare provision, social care for those disabled by the illness and the handling of health-related insurance claims. Obviously, funding is a major hurdle to be overcome; more on that in a later post.
Not just “a bit of PR”
It also needs to be emphasised that I’m not talking about just “a bit of PR”. That is already undertaken by some groups and charities who are to be applauded for continuing with this thankless task. Nor am I talking about more individual patient stories appearing in the media. Both of these approaches have been going on for the last few decades and, while they have their value, it’s quite clear that without a proper long-term collegiate strategy, they cannot address the bigger problems of how ME patients are viewed and the absence of sufficient political will to address the situation.
Many people look to the history of HIV/AIDS campaigning for a useful comparator with the ME situation. In fact, the trajectory and patient profile of the two illnesses and their stories are very different; comparisons between them do not yield much in the way of meaningful assistance. I know many will disagree but I simply refer them back to where the ME community currently finds itself at the beginning of 2019, in stark contrast to the position of the HIV/AIDS community.
The ongoing review of the NICE guidelines
This review by the UK’s National Institute for Health and Care Excellence commenced in 2017 and is long overdue. However, the process will not be completed until October 2020 by which time more ME patients will have died and many others will continue to experience unrelenting suffering without recognition, support or treatment.
The early indications from the NICE review of any real progress towards a significant shift in attitudes are not promising. This is yet another example of an area in which the overall narrative surrounding the illness and those living with it urgently needs recalibrating. The “wrong story” theme persists doggedly and infiltrates every single aspect of the political, medical, social and cultural landscapes.
Sexism and science in the ME community
I can report from my own experience and observation that sexism is alive and well in the international ME community. Given that this is a patient cohort which consists largely (though not exclusively) of women, that is particularly disappointing. Reported ratios vary but common estimates suggest that somewhere between 65% – 80% of ME patients are female. However, my perception is that this gender ratio is not properly reflected amongst the higher profile advocates and activists in the community.
This is only a broad generalisation based on my own subjective observations but, however unpopular it may be, I suspect there are others who may recognise this pattern.
Quite apart from the distressing nature of the treatment experienced by some women (probably as a result of unconscious bias rather than anything more sinister), there is another serious point here. The predominant focus of many male advocates/activists is to expand and improve on the scientific research targeted directly at solving the illness. Obviously, the only way through which we will establish causation, biomarkers and treatment for the illness is by continuing to research them, so of course this is a vital aim. Nevertheless, on its own, science is not enough, as is already apparent.
As I’ve said before in “Pause-Review-Reflect: towards a bigger picture“, we need to step back and consider the bigger picture of how best to address the reasons why we are so far behind other illnesses of similar controversy and/or vintage, such as multiple sclerosis or epilepsy. Scientific research is only one component of a much wider framework which requires the development of a political, medical and social context in which to flourish. This can only be realised through a customised and far-reaching strategy which faces squarely up to the reputational problems faced by this community.
A note on Brexit
It should be noted that in the UK, while the Brexit battle is still raging and likely to continue for the foreseeable future, all types of resources (especially research funding and meaningful parliamentary time) are in even shorter supply than usual. That is another challenge which needs to be met – and we are in completely uncharted territory with this one.
Why am I writing this post now?
Some will argue that there is already considerable progress. Yes, there is – but it is painfully slow and a step forward is all too often accompanied by a step backwards. Others will say that there are sinister forces abroad which deliberately obstruct that process and manipulate the media accordingly. Probably also true – and all the more reason why those in the ME community who feel disadvantaged by the current state of affairs need to work in a more intelligent fashion towards changing the prevailing establishment culture.
Four years ago, I wrote this in The Secret Files Unwrapped: Part 1 – the importance of fair and accurate records:
The complete absence of a visible patient narrative became painfully evident last week. The…British media’s wilfully ignorant coverage of ME patients’ perceived “fear of exercise” gave the headline writers a field day (examples here and here). Journalists appear to have regurgitated mindlessly a press release from the Science Media Centre’s relentless propaganda machine and failed to make any responsible enquiry
into the real story. Subsequent rebuttals from the charities limped in on the back foot; positive and
corrective commentary was drowned out in the general furore; patients and supporters rallied but
were all too late to the party.
Why? How could this happen yet again? Because it can…… Without such a [media] campaign in place, it will happen again; we will remain without a platform from which either to speak or to generate our own record for the archives.
I could have written the same thing only a few weeks ago. In December 2018, a minor study in the journal Psychoneuroendocrinology was puffed up out of all proportion to its significance or relevance, again by the Science Media Centre in London. It purported to show new evidence that the immune system of patients with Chronic Fatigue Syndrome/CFS (a term frequently and misleadingly conflated with ME; more on that in the next post) showed certain abnormalities.
National media spread the embargoed story following a press briefing three days earlier. Many hailed it as a breakthrough and positive news for the ME community. It wasn’t – but many who are unfamiliar with the history and politics of this illness, both inside and outside the community, might be forgiven for thinking it was.
The study used an interferon-alpha-induced model of “fatigue” in Hepatitis C patients and then later applied the discredited Oxford criteria to define CFS-like symptoms in some of the Hepatitis C cohort and, separately, a group of CFS patients. Abnormalities in the immune system of ME patients have been observed for decades so even if this study had used properly defined ME patients instead of modelled Hepatitis C and CFS patients, it was hardly startling news that they had found immune abnormalities and primed dysfunction.
The study came out of the King’s College London stable which vigorously promotes the biopsychosocial approach to illness (more on that in the next post), a system which has caused infinite damage to ME patients over the years by promoting Cognitive Behavioural Therapy and Graded Exercise Therapy as helpful treatments for CFS patients.
Following the publication of that study and the predictable, ill-informed media hype, the need for me to start writing this post (and actually finish it this time) finally became overwhelming. I anticipate that it will take a series of three posts to complete an initial discussion of the issues and set out some of the problems which need to be tackled.
“Changing the narrative #2: warring factions, divide & rule and death threats” will follow soon.
Part 2 can be found here