The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.
“Changing the narrative” was originally planned as a series of three posts which explored several different aspects relating to the perception of patients who live with the illness myalgic encephalomyelitis (ME), as I have since 1981 (for more information see About). As a result of the feedback I have received and discussion which has appeared elsewhere, I am adding further posts to respond to and clarify certain points which have arisen subsequently.
The original question was 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?
A full list of the posts in this series can be found here.
This post runs at about 3000 words. As usual, it is broken down into short sections to make it easier for those who, like me, experience cognitive challenges as a result of ME, or any other condition.
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Please note that all comments are moderated before publication. If your comment does not appear immediately, it simply means that I haven’t seen it yet. If there is a gap between posting a comment and its appearance on the blog, this does not mean that I am exercising censorship. For details of my policy on comments, see the About section of this blog.
Parameters and rationale for writing this series: a reminder
This is a summary of the original overview:
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.
The effects of such a strategy would eventually begin to change attitudes towards investment in medical research, appropriate healthcare provision, social care for those disabled by the illness and the handling of insurance claims. Ultimately, this should gradually create the impetus for a complete culture shift at every level – political, medical, social and popular.
At this point, a much, much smarter approach to strategic communications is required.
I made it clear at the beginning of each post in this series that what I was writing related to the situation in the UK. ME advocacy has taken different approaches in different countries. My comments in #2 were concerned only with UK advocacy during the last ten years, in particular the period from 2010 – 2012.
I also flagged up at the outset of each post that it contained contentious and complex subject matter. If a particular topic is sensitive and challenging then tackling it requires careful consideration. Having reflected on this matter over several years, I decided it was important enough that, whatever the consequences, it now needed to be raised.
It’s easy enough to tap into confirmation bias and write the things that people want to hear. However, whilst the resulting chorus of agreement may be very gratifying for everyone concerned, it doesn’t necessarily provide any useful material in the longer term. Sometimes the difficult stuff has to be discussed too.
As I wrote in #3 (emphasis added here):
ME as an illness is several decades behind where it should be in terms of recognition and treatment. It is therefore necessary to consider what might have been impeding progress, take stock of the current situation and consider where the patient community might choose to go from here.
This includes reflecting on past difficulties and how to avoid them in the future, looking at who currently controls the narrative and debating how that could be adjusted. The overwhelming imbalance between the group which currently controls the story and the ME patient community must be addressed.
Suggestions that I have been “used” or “misled” by other parties
It has been suggested that I have been “used” or “misled” by the SMC (Science Media Centre) and/or the BPS (biopsychosocial) group into writing about historical allegations of harassment and abusive behaviour made against the ME community. Both the SMC and the BPS group are well-known for their anti-ME patient propaganda (see #2 for a taxonomy of the groups involved in this discussion).
To suggest that a member of the ME community has allowed themselves to be “used” by either of those bodies is a very serious allegation. To say that I have been “misled” by them is just a cheap shot, presumably with the intention of undermining my personal judgment and integrity, and therefore not worthy of further comment.
I very much doubt that anything I say here will change the views of those who made those claims. Nevertheless, it goes without saying that such suggestions are without foundation.
Queen Mary University of London (QMUL)’s freedom of information Tribunal judgment
Tribunals form an integral part of patient engagement, as I discussed in #3 of this series. Following my earlier posts, a number of people have raised the issue of the 2016 freedom of information Tribunal judgment relating to PACE trial data.
This judgment concerned QMUL’s appeal against the decision of the Information Commissioner that certain data from the controversial PACE trial should be handed over to the original information requestor, Alem Matthees. The hearing of this case took place in April 2016. After a four-month wait for the judgment, the Tribunal ordered that the data should be released to Mr Matthees.
Amongst many other matters, the 48-page judgment refers to assertions by witnesses for QMUL that patient activists represented a threat to trial participants. The witnesses surmised that this perceived danger could become real if the participants were to become identifiable as a result of the requested data being released. However, the Tribunal was dismissive of the implied and unsubstantiated claims about a dangerous group of activists in the ME patient community.
The fact that the Tribunal rejected the QMUL witnesses’ assertions about patient activism is extremely helpful to the ME community in rebutting more general allegations of harassment and abusive behaviour. However, the Tribunal’s task was to consider the submissions from all parties on the legal and factual basis for QMUL’s appeal against the order to release the data in relation to the facts of this case only.
The remarks about patient activism were incidental (obiter) to the Tribunal’s ultimate finding, not germane to it, and applied only within the narrow remit of this hearing. The Tribunal’s comments about ME patient activism – and the attendant lack of acceptable evidence – were very heartening. However, the applicability of those remarks lies in the context of this judgment alone rather than as a blanket exoneration of all putative patient activity at any time.
Simon Wessely was not a PACE trial author so he was not a party in this case. The video which I discussed in #2 was associated only with Professor Wessely so its existence was never going to be a matter for consideration by this Tribunal.
This next section is an edited version of my comments during recent email exchanges. It deals with the background to the video mentioned in #2 and the reasons for examining the evidence for the harassment allegations
This section is an edited version of my replies to some comments on the posts regarding the proposal for the creation of a media steering group
My purpose in writing this series was to take an overview in exploring how we had reached this point and what the areas for consideration might be, not to expand in great detail at this stage. The posts were long enough already and more detail would have confused things further at this early stage. What I am writing below still only represents a reduction of the issues which would need to be discussed.
The need to achieve community consensus in order to create a media steering group:
A consensus within the community (via existing groups and individuals) would be required in order to set up a mechanism for creating the media steering group (MSG) proposed in #3. The MSG can then be delegated with the task of making decisions on behalf of the patient community. It is not a consensus for agreement on each individual action by the group as that would be unworkable. The MSG would brief an appropriate consultancy, then consider whether to act on the advice received and how it could be implemented.
If this hypothetical scenario was to have any chance of success, it would need to start from a fresh perspective. That means not using any of the current group collaborations as, inevitably, they each come with their own baggage. A new coalition must first be established which does not favour any single pre-existing group.
The trust problem:
The biggest problem is community trust which is currently lacking because of the many self-evident internal divisions which exist, in part, because of the “divide and rule” policy of the BPS group. There is no magic formula for overcoming the trust issue. It is simply a question of whether there is sufficient collective will to move forward or whether individuals accept that the current situation may continue.
An MSG, if appointed, would need to be transparent in its dealings and accountable to the organisations. It is not feasible for it to be accountable to each individual patient. Transparency would be maintained by keeping the community informed of its actions – which does, however, involve more work for group members and would need to be factored into costing and feasibility.
The difficulty of reaching agreement between the charities/groups with their pre-existing views would be a major obstacle in this process. The best option would be for the MSG to set a completely new agenda based on lessons of the past, such as the diverging responses to PACE. Strong leadership would be absolutely essential in this scenario.
Another possibility is to aim for a completely new body to be co-opted and/or elected directly from the patient community, bypassing existing groups. However, such a group would still have to be actively recruited by someone, it would lack credibility and have to start from scratch without being able to use any of the infrastructure from existing groups.
A cohesive voice is needed:
The ME community’s media contact points in existence at the moment are based within various different groups and known individuals. There is no single cohesive voice from an identifiable national spokesperson and this reduces the power of any message. One of the aims of this exercise would be to actively foster and develop media relationships in both above and below the line activity.
For the bigger events, a recognisable national figurehead would speak with greater authority thereby raising the profile of the ME community and its concerns. As I said in the posts, this does not need to interfere with local PR arrangements.
Representatives from the media do occasionally approach the current charities and groups for comment or interview, as has been pointed out. However, these contacts are usually low-key and/or often only in response to a story that has already been put out by the SMC. The ME community should be leading the media and generating its own narrative, not simply reacting to stories from elsewhere.
A new media hub for the ME patient community:
A newly-constituted national ME community media hub should be created. This would be overseen by the MSG. Appropriate events would need to be organised accordingly and it would be made clear to all media outlets how to contact this new media hub. Media relations would then be managed by the hub on an ongoing and pro-active basis, not just waiting for the next SMC story to break.
In response to: “But I’m not sure if this is due to the ME community handling their media communications badly, or that the odds are simply stacked against us.”:
The odds are stacked against us because, in spite of all the enormous efforts made by many groups and individuals, we still haven’t done enough to change the situation. What I don’t accept is that there’s nothing more we can do about it: there is a standard pathway to address exactly this problem and that’s what I’m proposing. To me, the mystery is why this hasn’t happened much earlier on. Again, this is not “just a bit of PR” but an ongoing strategy on a large scale, underpinned by sufficient funding and professional advice.
In response to: “Could you give some examples in the past where the media response was inadequate and working through a media steering group would have provided better results?”:
Yes – reaction to the publication of the PACE trial in 2011. We knew it would be coming and we should have had a contingency plan in place. The patient community should have had its own media briefing with experts on hand to counteract the SMC spin. That’s the way it works. Professional advice, planning and resources.
In response to: “There seems to be some disagreement about the “threats and harassment” –episode”:
The allegations were made. Again, we should have had an emergency plan ready to repudiate and/or counteract those, or any other, allegations. That is a standard part of any ongoing communications strategy. We have been living with the legacy of that failure ever since.
The need for a coordinated approach:
One of the biggest problems in dealing with any of the above is the lack of coordination amongst the charities and groups. No single spokesperson from just one group can possibly carry the necessary level of authority to address something on the scale of the harassment allegations. A nationally-coordinated, timely and appropriate response is the only possible way of managing a crisis situation. The same principle applies to every other facet of ME action or activism. Without that, the SMC continues to call the shots.
As we know, individual patients/advocates who try to argue the point are frequently ignored or ridiculed (I speak from my own experience here).
The need for expert professional advice:
The other crucial element missing from the current situation is professional expertise. This a complex and long-standing problem which requires highly specialist solutions. The MSG would be created as a mechanism for seeking that advice and setting up a platform from which to launch a proper media strategy.
The MSG would obtain the advice, assess it and then direct any action arising from it. It is not the vehicle for actually implementing it; that would have to come from the existing infrastructure of the charities, groups and individuals who make up the patient community.
To the best of my knowledge, the pathway which I suggested has not been used before in the UK and certainly not on the scale which I’m proposing.
Just to repeat two important points from this series of posts:
1.Collective responsibility does not mean that everyone agrees on the issues but that a pragmatic consensus must be attained in order to move forward.
2. It’s vital to remember that a successful communications strategy is based on a pragmatic approach to how the world actually is, not a wish for how it should be.
And finally, because it can’t be said often enough:
The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.