Changing the narrative #2: warring factions, divide & rule and death threats

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

“Institutional abuse is the maltreatment of a person…….from a system of power.”

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[Note April 2021: I have made a small number of adjustments and clarifications to this post as a result of further information becoming available. With three exceptions, I have not marked them as they are of minor significance and do not change the overall tone or meaning.]

Introduction

This is the second part of my series of posts on changing the narrative around the illness myalgic encephalomyelitis (ME). A full list of this series of posts can be found here.

This is a very long post (3900 words, including the Re-cap) but it is one that is better kept as a single piece rather than separated into two shorter posts. As usual, I have split it into several different sections after the Re-cap; it then falls naturally into a Section A and a Section B which are clearly marked. I hope this will make it easier to read for those who, like me, experience cognitive challenges as a result of ME or any other condition.

Despite the international reach of the internet, each geopolitical region still faces its own unique set of challenges when it comes to healthcare and related matters. This series of posts focuses on the situation in the UK. However, some of the links use references from other countries because the general principles remain the same, whatever the specific local considerations may be.

The Brexit frenzy continues…….

It’s hard to explain to those outside the UK just how profoundly the ongoing Brexit chaos continues to affect every aspect of public and private life here. I think it’s fair to say that it’s unrealistic to expect much sense from any of our institutions or government departments for some time to come. 

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Re-cap

 For new readers or those needing a reminder, this is a summary of the first post:

I started writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only then to abandon them because the subject-matter is complex and contentious. While I have written about the topic as part of many other posts, I have never published a post which was devoted to this subject alone – until now.

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.

In the film“Unrest”  , director 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 different people at different times in different places – but perhaps not in quite the same way as I express it here.

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SECTION A

Dangerous? 

Some years ago, I was discussing the media coverage of ME patients with a friend. He was not inherently unsympathetic but his knowledge of the illness and its history was confined to the standard, mostly negative, media stories (we hadn’t discussed the subject previously in any detail). In his case, the media aspect was particularly relevant as he was closely associated with the now-defunct Press Complaints Commission (PCC)

It emerged during our discussion that my friend’s perception was that ME patients were a PCC nightmare. The main groups which the Commission considered to be the most dangerous were animal rights campaigners, climate change activists (at this time, the extreme activists were still regarded as highly dangerous) and ME patients.

According to my friend, ME patients were amongst the most vocal groups who were creating major problems for the Commission at that time. The serial complaints made by the community about press coverage were found to be mostly unsubstantiated and, by extension, causing harassment to members of the Commission. Moreover, the perception of ME patients was of a disaffected, highly-organised and potentially violent group, in pursuit of its own misguided agenda.

My friend was a well-informed, media-literate, highly-regarded academic and not an unsympathetic person. However, the fact that this was his perception of the ME community was – and still is – a sobering reminder of how much work needs to be done to repair the damage from decades of entrenched stigma and neglect.

The PR offensive against the community has been sublimely effective. There is an enormous task ahead if we are to turn that around and change the narrative.

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 The warring factions

Defining and identifying the various “factions” in ME history is almost impossible but must be attempted for any of this to make sense. It is an entirely artificial construct but a necessary one for me to continue writing.

For the purposes of this post, I am devising an informal taxonomy of some of the groups which feature in this discussion. It’s important to note that the list is not intended to be exhaustive and the defined groups have wildly overlapping and constantly shifting boundaries. They are:

1. The “ME community”: patients who have been sick for a long time (usually 10 years +) with a small group of supporters and healthcare providers who are very familiar with the nature and history of the illness.
   These patients have symptoms which fit most closely with the ME International Consensus Criteria (ME-ICC) although they may have been diagnosed under another name (see group 3 below). This is the group which I refer to loosely as “the ME community” [full disclosure: I am in this group].
2. The “BPS group”: the majority of healthcare providers, associated professionals and their supporters whose philosophy of the illness is based on (though not exclusively) the biopsychosocial (“BPS”) model of health.
   The BPS model of health has been particularly unhelpful to ME patients as it focuses attention on the psychological and behavioural approaches to treatment ie. Cognitive Behavioural Therapy and Graded Exercise Therapy. This has the inevitable effect of diverting resources away from desperately-needed biomedical research into causation and treatment. It can also encourage patient-blaming (“if you really wanted to get better, you could”) and has the additional effect of demeaning patients’ experiences in public perception. This approach can be loosely categorised as the institutional or preferred “establishment” belief.
3. “CFS+”: Those diagnosed with “chronic fatigue syndrome” or CFS and their supporters. The name of the illness is highly controversial.
   Until the late 1980’s, variations of the term myalgic encephalomyelitis/ME were in common usage. However, in 1988, the term “chronic fatigue syndrome” was introduced by a working group from the United States Centers for Disease Control and Prevention, thereby hugely amplifying the controversy and confusion surrounding both illnesses. Other countries (including the UK) adopted the term, increasing the chaos and inflaming the debate. Because many healthcare practitioners are unfamiliar with the ME-ICC (see 1 above) many patients diagnosed with CFS may, in fact, have ME – and vice versa. As there are many different names associated with the condition (which affects an estimated 20 million people worldwide) and around twenty different sets of diagnostic criteria, accurate identification of who has what is challenging and frequently misleading.
4. “Others”: the group represented by everyone else, including patients, non-patients and the sick who are as yet undiagnosed.
   This group is very fluid and not really a “faction” as such but can become embroiled in arguments on any side of the debate.

Many will not agree with my way of identifying the “warring factions”. I don’t like it myself but, without some attempt at providing stated terms of reference, I cannot continue to write these posts.

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There are often comments on social media to the effect that the ME community is losing the PR battle against the BPS “brigade”. However, the ME community is not actually losing this PR battle with the BPS “brigade” at all – for the simple reason that we are not even in it. Of course, there are constant skirmishes on social media (Twitter especially), and occasional rebuttals against negative publicity are proffered but the idea that the ME community has a coherent strategic approach which is being put into practice by an organised battle group is wishful thinking.

Without power

The community’s detractors, including the BPS group, need to do very little because, at the moment, the community itself has precious little power. It has no clear strategy, few resources and minimal credibility. And, without power, the community has no platform from which to speak or defend its position.

In the current political and cultural climate, the balance of power is so heavily loaded in favour of the BPS group and against the community that the occasional skirmish or defensive rebuttal cannot even begin to tip the scales. There is simply no effective opposition.

Divide and rule – by media 

The BPS group continues to express carefully-timed sympathy for “ME/CFS” (the unhelpful conflation of ME and chronic fatigue syndrome) patients and pays occasional lip service to concerns about the lack of biomedical progress. They even come out with the occasional study which apparently examines some aspect of immune dysfunction, such as the December 2018 Psychoneuroendocrinology paper which I mentioned in my previous post. In fact, the study was really looking at “fatigue” rather than the immune system and was of little consequence for ME patients.

These final master strokes of biomedical observance by the BPS group sweep up a few more outliers. These can include recently-diagnosed patients and their families, easily-influenced healthcare professionals, politicians, interested members of the public who find it easier to blame patients than support them – and those potentially inside the ME community who find themselves in uncertain or conflicted states.

The ME community is rendered powerless again, before the battle has even begun. Internally, it remains fractured and fractious; members of the community can turn on each other with alarming frequency and ferocity, ably supported – as in all such environments – by the platforms of social media. The strategy of “divide and rule” has never worked better. The ME community is well on its way to becoming an unwitting casualty of a “Duchin”-type strategy aimed at eliminating grassroots activists.

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I have seen comments from the community that the media could in some way “save” the ME community from the undermining effects and negative campaigning of the BPS group if journalists were doing their job properly. The way things are at the moment, this isn’t going to happen any time soon. I suggest three reasons for that:

1. The media (however one chooses to interpret that particular term) no longer constitutes an identifiable, self-determining entity. Those days are long gone. There are vestiges of real, investigative journalism in some media outlets but they are rare. Old-style campaigning journalism is now an expensive luxury and therefore difficult to justify in today’s fiercely competitive environment where news can travel around the globe at the click of a mouse – and be updated within seconds.
2. The media are – and to a large extent always have been – merely a conduit for whatever is channelled into them. The subsequent outflow is frequently subject to little or no filtering. The stranglehold of the BPS group on the current narrative surrounding the illness and the patient community is therefore pretty much a done deal. This is what needs to be changed – robustly, pro-actively and on a much bigger scale than anything previously attempted.
3. The rise of social media has thrown out the original rule book. The success of “fake” news and covert manipulation, alongside the sacrifice of “old” journalistic principles to feed the hungry new business models, has created a recalcitrant beast roaming through a constantly shifting landscape. At this point, a much, much smarter approach to strategic communications is required.

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SECTION B

Death threats, abuse and harassment

Anyone connected with the ME community is likely to be aware of the many and varied accounts of death threats, abuse and other forms of harassment meted out to doctors, researchers, healthcare employees and journalists by “activist” members of the community.  These stories have spiralled, largely unchecked, over several decades, (example here), particularly in response to three significant events:

1. The failed attempt at securing a judicial review of the NICE guidelines in 2009
2. Reaction to the publication of the PACE trial in The Lancet in 2011
3. The ultimate failure to establish the XMRV virus as a direct cause of ME in 2012.

The targets of these actions have mostly been those connected with the BPS group and a handful of innocent researchers. The amount of media coverage and listed allegations is vast. It is therefore an impossible task to collate and examine them all here. However, both the nature of the allegations and the proliferation of stories about them have always troubled me and I have, over the last few years, done some research into their veracity.

It is quite clear that some of these stories are founded on fact. What also appears to be true is that the huge amount of media space devoted to covering them is wildly disproportionate to the behaviour which was actually experienced. Much of what is said is anecdotal and therefore difficult to verify. I have also been given some evidence in strict confidence which I therefore cannot publish to support my assertions.

It would be impossible for me to document everything I have looked at (it would need a whole other series of posts) and there will be plenty of other material which I haven’t seen. Nevertheless, my research leads me to believe that the accounts of death threats and harassment are, for the most part, based on truth and to pretend otherwise is to remain in denial of the less palatable aspects of ME activism.

What is also patently obvious is that the stories were massively over-hyped. It looks likely that some people may have jumped on the harassment bandwagon by constantly repeating the same stories and embellishing the basic facts in order to ramp up the anti-ME patient rhetoric. Whilst that is viciously opportunistic and unethical behaviour, even the smallest grain of truth at the heart of the story gave those involved unlimited licence to continue to propagate it further.

Of course, there has been some pushback from members of the ME community via rebuttal statements from the ME charities/patient groups and responses from individuals in the comments sections of the publications involved (although those sections are sometimes closed or heavily-moderated, such is the community’s reputation). However, the abiding impression is of an angry mob with too many activists indulging in excessively hostile campaigns towards the very people who are – apparently – trying to help them.

Whether or not that impression is true isn’t the issue here. What does matter is, as I said earlier in this post, that “the ME community is not actually losing this PR battle with the BPS group at all – for the simple reason that we are not even in it…….In the current political and cultural climate, the balance of power is so heavily-loaded in favour of the BPS group and against the community that the occasional [social media] skirmish or defensive rebuttal cannot even begin to tip the scales. There is simply no effective opposition.”

At this point, it is helpful to remember one of the first rules of therapy: until a problem is recognised and acknowledged, there can be no possibility of beginning to solve it. 

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BUT…….is the boot sometimes on the other foot?

From time to time, I come across references to threats which have been made to doctors/scientists/journalists who are sympathetic towards the ME community and are working or planning to work on much-needed biomedical research and positive media articles about ME (or CFS). Worryingly, it appears that sometimes these threats have been successful.

Those who mention these attempts to threaten them are, for obvious reasons, sometimes unwilling or unable to explain further or give more detail so it is not feasible to investigate or verify all such allegations. I have examined a few of them and, while some are clearly genuine, others are more difficult to clarify.

If anyone has any hard evidence on this subject and would like to get in touch with me (in strict confidence), then my contact details can be found in the About section of this blog.

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Case study: the online video 

The story

In 2011, senior British psychiatrist Professor Sir Simon Wessely, known to many in the ME community as a founder member of the BPS group, spoke about the death threats he claimed to have received and the harassment that he, and others, had experienced. The story was chronicled in many publications, such as here and here. As always, a vague attempt at “balance” was made in allowing a sliver of space for comment from the ME community but the clear intention was to perpetuate the story about these militant, frightening, ungrateful patients. It succeeded brilliantly.

Professor Wessely and others probably received a degree of abuse and threats from more than one source. One in particular consisted of a video directed specifically at Professor Wessely and which was posted online. My information on timing is limited so the exact date is unclear but it would have been at some point pre-2011 [date adjusted]. It appears that after the video was uploaded a complaint was made almost immediately. As a result, it was taken down very quickly.

I had heard of this video but not seen it until a copy of it was sent to me in strictest confidence in early 2017. [Edited for clarification: the source of the video was known to me but that information has to remain confidential]. It was one of the most deeply disturbing things I have ever witnessed. For reasons which will become apparent, I’m not going to attempt to describe it but it was utterly chilling both in its content and in the high quality of its production. It was clearly made by someone with exceptionally competent technical skills; this carefully calculated presentation only served to make it even more menacing.

This video contained abuse and threats which were completely credible. It was not made in the heat of the moment but over a period of time. It was aimed at a high-profile public figure whose whereabouts could easily be tracked. It therefore constituted a very real risk to the person to whom it was addressed and also, by extension, others who espoused a similar professional approach.

Back to credentials again (see Changing the narrative #1):

I qualified as barrister in 1987. I worked as a criminal lawyer for twelve years, including nine years with the Crown Prosecution Service (CPS). I have been accustomed to reviewing all kinds of evidential material over the years including shocking, offensive and obscene videos and making decisions on whether or not criminal proceedings should be brought against putative offenders. 

Legal consequences…..

Professor Wessely said in an interview that he took legal advice as a result of the threats received. I don’t know the outcome of that advice (it would have been given in confidence) nor whether the matter was referred to the CPS for a decision on whether or not to charge anyone with a criminal offence. As far as I’m aware, no further action was taken.

…..And the prosecution test

What I can say, in view of what I saw, is that had I been the reviewing lawyer of the video, I would have given serious consideration to prosecuting the originator. There was sufficient evidence to support charging that person with more than one criminal offence.

For a prosecution lawyer, the process of considering a charge is a two-stage test: the first stage is whether or not there is sufficient evidence for a realistic prospect of a conviction; if that first test is satisfied, then the second stage is to consider whether or not it is in the public interest to proceed. In this instance, given the confidential background details which were passed on to me, the answer to that public interest test would probably have been “no” so the person responsible for the video would not have been charged. [Sentence deleted]

Practical consequences: increased security and open season for the media

As a result of the threats and other abusive actions, Professor Wessely was given extra police security for some time, as were others who worked in the field. Given what had happened, this does not seem a disproportionately alarmist response although it has been criticised by some members of the ME community. Had I been the target of such behaviour, I would have been extremely concerned for my own immediate safety and that of those around me.

And, of course, the media had a field day, as we already know. Yet again, the ME community was pilloried and vilified. Some attempts were made to stem the tide and limit the damage but with little success. Again – too little, too late.

So what should the community have done? 

Given the circumstances at the time, the options were limited. What should have happened is this:

• Having confirmed the existence of the evidence, a joint media statement should have been issued very rapidly through a collaboration of the main charities and patient groups, ideally through an identifiable spokesperson.
• The statement should have condemned the death threats unreservedly, along with any other clear evidence of harassment, and indicated that the charities and groups would continue their vital work on behalf of the community. If such a statement was made at the time, I have found no sign of it.
• The community needed to distance itself from such extreme behaviour in order to re-establish its position as a credible entity. Extreme activism must be marginalised otherwise the moral high ground is surrendered to the other side.

Failure to take this course of action enabled the legitimisation of a narrative which demonised the entire patient community.

Whatever the BPS group has done and continues to do, abusive and threatening behaviour is never justified. If such actions are condoned, actively or by default, the community instantly loses its integrity, no matter how vulnerable or disadvantaged it may be. I say that without hesitation as someone who has lived with this illness for nearly four decades, experienced significant abuse and loss as a result, and fully expects to die before an effective treatment or cure is found.

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Freedom of expression is not an unconditional right. It comes with responsibilities and limitations according to law. Are the fundamental rights of ME patients being stomped on on a daily basis? Yes, of course they are – but, as things stand, we would have an uphill struggle proving that. We first need to re-establish our visible presence, our commitment and, above all, our integrity.

The way to do that is to acknowledge the unpalatable actions by ALL parties involved in this history and begin to consider how to move forward in a smarter, more constructive manner. 

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The third part of this series “Changing the narrative #3: due process, engagement and a pathway (magic bullet not included)” will follow soon.

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