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Changing the narrative #3: due process, engagement and a pathway (magic bullet not included)

January 21, 2019

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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Since I started publishing this series of posts, I have received mixed feedback. I’m grateful to those who have provided positive and constructive comments.

There have also been some less helpful reactions to the previous post. My personal integrity and professional competence have been called into question. The existence of evidence to which I referred has been doubted, thereby implying that I am a liar or a fantasist.  I have been accused of being on a “one-woman ego trip”. It has also been suggested that I am now in the thrall of the “SMC/BPS” group.

Because of the complex and contentious nature of this series, which I flagged up from the outset, “Changing the narrative #2” was a particularly difficult piece to write. From my own perspective, and that of some readers, most of the criticisms raised had already been covered in the post or in the links provided but I accept that this may not have always been as clear as it could have been.

This post runs at just over 3000 words including the re-cap. As always, it is broken down into short sections to make it easier to read for those who, like me, experience cognitive challenges as a result of living with ME, or any other illness.

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trojanwarsvasehelen

The Trojan wars: detail of vase from 5th century BC found in Italy, now in the Louvre Museum

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Introduction

This is the third instalment in 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.

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.

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Re-cap of #1 and #2

For new readers or those needing a reminder, the purpose of this series of posts is set out here:

Changing the narrative #1

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?

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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Changing the narrative #2

In the second post of this series, I discussed the public perception of ME patients and the illness itself. The challenges of dealing with the media, primed to criticise the ME community and operating in a rapidly-changing environment, were also considered. I reflected on some of the difficulties relating to the necessity of defining groups in relation to the community and the self-evident internal and external tensions.

Reports from episodes in the community’s troubled history involving allegations of abusive behaviour were examined. These included a specific case study concerning the targeting of a founder member of the biopsychosocial (BPS) model of health for ME patients (a model which promotes inappropriate and dangerous treatments for the illness). The consequent, heavily-biased media coverage of those allegations caused serious and long-lasting damage to the ME community.

A suggestion of how that situation could have been addressed at the time by the issuing of a joint media statement on behalf of the community was proposed. The fact that this did not happen may have enabled the legitimisation of a narrative which continued to demonise ME patients. The BPS group may have been handed the ammunition by a small number of extremists but community representations were insufficient to prevent it being used over and over again.

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DUE PROCESS AND ENGAGEMENT (not as boring as it sounds)

Due process is at the heart of this blog; its sub-heading is “Law and Health: due process and civil society”. How we handle our dealings with governmental departments, public/private bodies and media/civil society organisations is of vital importance because it reflects back on us both collectively as a community and in terms of the progress we may or may not be making.

Given that the main purpose of this series is to consider the reputational issues surrounding the ME community and their consequences, it may be helpful to examine the dialogue between the community and the institutions.

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Public engagement

To start on a positive note:  Carol Monaghan, SNP Member of Parliament for Glasgow NW has secured a backbench debate in the Chamber of the House of Commons on Thursday 24 January 2019 in the afternoon. Ms Monaghan has previously led two Westminster Hall debates on ME issues in 2018. For more detail, including the wording of the motion, see here. The debate should be available live at parliamentlive.tv

[Update 25 January 2019: Hansard transcript of parliamentary debate here, YouTube video 1.5 hours long here]

The ME community frequently has an uphill struggle in its engagement with the various branches of state which carry out the administrative processes of daily life (health, education, social care, housing etc.). As things stand, the prospects of changing the status quo are therefore lower than they should be. In spite of the enormous effort put in by many within the charities and patient groups, meetings and activities appear to remain comparatively low-key and senior level engagement less than ideal.

This is not to deny that progress has been made and meaningful outcomes are achieved.  Nevertheless, the resources required for improving the very poor quality of life of the 250,000 people living with ME are far below where they should be, given the economic disease burden. Estimates of that burden vary considerably eg. £3.3 billion and £6.4 billion but UK public funding for biomedical research remains derisory, according to this masterly obfuscation of facts. Progress in securing resources and appropriate (ie. non-psychosocial) research for ME patients is far behind where it should be.

The ME community in the UK still does not have its rightful place “at the table” of public engagement. A renewed approach to strategic communications could facilitate a more streamlined process for furthering the interests of patients.

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Direct patient engagement

From time to time, comments appear on social media about individual complaints to various institutions (such as NICE, the National Institute for Health and Care Excellence) being knocked back and interpreting this as a potential conspiracy against the complainant or the group they represent. Whilst the conspiracy theory may be accurate, the more usual reasons for complaints being rejected is the failure to follow the prescribed process or administrative incompetence.

Government bodies and most public/private institutions are required to have a formal complaints and/or appeals procedure. Unfortunately, these are frequently (and, some might argue, deliberately) very difficult to access and inherently opaque, laborious and time/energy-consuming. However, unless the full internal procedure is followed closely – often involving many stages of escalation – it is inevitable that the complaint/appeal will be rejected.

If a full internal complaint/appeal process has been completed and the matter remains unresolved the complainant can then consider applying for a judicial review of the decision of the relevant body by a High Court judge or, in cases where there is a statutory route in force (such as freedom of information requests), appealing to a Tribunal.

The judicial review route

This is a complex, lengthy and potentially expensive process. It is not possible to take this route until the full internal procedure of the relevant body has been exhausted. Missing out any of the earlier stages means that the application will be knocked back immediately. Judicial review is not automatic as of right and strict criteria must be fulfilled.

The first stage is to apply to a High Court judge for permission to launch proceedings. The judge will consider the merits of the case and either grant or refuse permission. Many applications fail at this stage as the threshold has become much higher in recent years to reduce the previously increasing number of unmeritorious applications. If permission is granted then the case can proceed.

The Tribunal route

This process applies in cases such as requests made under the Freedom of Information Act (FOIA). In 2015, in response to a request from two journalists, I wrote a short guide to the FOIA process which can  be found here.

I have followed various procedures to pursue complaints or get further information, sometimes successfully, frequently not. I know how taxing they can be. Examples of my work can be found elsewhere on this blog, relating to the so-called “Secret Files” on ME, Karina Hansen, the PACE trial and the NICE guidelines review.

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Whilst the above processes apply to the UK, most countries which follow the rule of law have similar systems in place. The viewing statistics from this blog show that the majority of readers (though not all) are in countries which observe some form of democracy and democratic process. Unfortunately, the number of countries worldwide which do follow democratic principles represents a minority; many states fail to reach the standards agreed by the international community to qualify as full democracies.

The problem with the democratic process is that it is, by its very nature, slow, cumbersome and frustrating. The checks and balances required to be carried out, the plodding nature of the judicial process, parliamentary procedure and the application of executive powers can reduce progress to a snail’s pace. It may appear to be deliberately obstructive (and my experience is that sometimes that is indeed the case) but the most common reason for delay or absence of response is either lack of resources or it’s just a SNAFU.

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What can we do now?

In order to move forward at an accelerated pace, it is necessary to think big. Highly activist campaigns such as breast cancer and HIV/AIDS can provide models of scope but their trajectories and patient profiles are very different. Unlike patients with those diseases, by the time someone is diagnosed with ME they may have become too disabled to campaign effectively.

As there is still no universally accepted diagnostic biomarker for ME, family/friends/employers/schools/local authorities etc. may be in denial about the patient’s illness and therefore unsupportive or actively hostile.

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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.

Any action plan should not include going back and trying to correct all the damaging stories of the past for the simple reason that it would be an impossible task. However, the community needs to be better prepared to address negative publicity – past, present and future – which may still arise.

If the ME community were to begin steering the narrative from its own firmly-established platform, then the focus for media contact should shift away from the Science Media Centre’s BPS-led bias and move towards a more patient-led agenda. This approach would incorporate (amongst other things):

  • Exposing the shocking treatment of patients over many decades, including ME-related deaths, illness denial and serial abuse of patients both medically and socially
  • Highlighting the long history of an untenable lack of public funding for biomedical research and the impact of this policy on patients’ lives
  • Explaining the progress which is being made in international research, in spite of the lack of resources, and the need for greater UK participation in that research
  • Setting up a recognised platform from which to counteract the negative publicity generated by hostile and/or ill-informed parties

If handled correctly, this should gradually create the impetus for a complete culture shift at every level – political, medical, social and popular.

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It’s easy enough to set out a simplified pathway in order to address the issues and create a new narrative. The real challenge is how to tackle the innumerable obstacles which immediately become apparent and manage them through a long-term, successful campaign. It’s vital to remember that a communications strategy is based on a pragmatic approach to how the world actually is, not a wish for how it should be.

A SIMPLIFIED PATHWAY 

  1. Create a media steering group constituted by a coalition of representatives from the main patient organisations in the UK
  2. Obtain funding by inviting those organisations to donate to a seed fund in order to engage a professional fundraiser. The fundraiser should raise the fund to a realistic amount* for appointing a strategic communications consultancy for a minimum of three years
  3. Carry out a search for an appropriate consultancy which is competent to take on this representative grouping of the ME community as a client
  4. Brief the consultancy on the basis of a) advising generally on media, communication and lobbying strategies and b) addressing the wider reputational problems faced by the community
  5. Establish an easily-accessible centralised media point of contact for dealing with day-to-day enquiries. An identifiable media spokesperson (with a back-up) should be in place as soon as possible.

*Costing out the process is not possible as yet but a substantial amount would be required. It may be desirable for the organisations which decided to become involved to review their spending commitments and adjust their priorities accordingly.

Some challenges

The constitution of a media steering group is likely to be the biggest challenge of all. The lack of coordination amongst existing groups has been a major stumbling-block to progress. The media steering group should be a newly-formed body, not an add-on to any existing group.

A request for unity in the ME community would be naive and unrealistic but, unless some level of compromise is accepted, it will be impossible to achieve a mandate with which to proceed. Collective responsibility does not mean that everyone agrees on the issues but that a pragmatic consensus must be attained in order to move forward.

Funding is always one of the biggest challenges for any charity or interest group. This 2012 article “Disease Politics and Medical Research Funding: Three ways Advocacy Shapes Policy” gives some useful insights and may be helpful in shaping a funding initiative. In the “Results” section it states the following:

Increases in the number of nonprofits and lobbying expenditures are both significantly associated with increases in research funding, with each $1,000 spent on lobbying associated with a $25,000 increase in research funds the following year.

The search for an appropriate consultancy is less of a problem. Research combined with the knowledge and experience of community members should provide sufficient information to draw up a shortlist of suitable candidates.

Briefing the appointed consultancy is one of the most important stages in the process. The success of the consultancy’s work can only be as good as the briefing it receives. It’s very much a GIGO situation so must be handled with skill and expertise.

Establishing a centralised media point of contact is a logistical matter rather than a major obstacle. A centralised contact point does not need to interfere with local arrangements by local groups but should create an recognisable hub for all national media enquiries. Recruiting a competent spokesperson/figurehead is a challenge but one which must be addressed using community skills and experience.

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Changing the narrative?

An important step in changing the narrative is to reformulate the language relating to ME. The community has been forced into a defensive attitude for decades, largely as a result of the stranglehold by the powerful psychiatric lobby from the 1980’s onwards and the consequent undermining of community power. This reformulation of language can operate at all levels, privately and publicly.

A simple example is to apply an assertive approach to conversations about the illness, starting with something as simple as refusing to engage with a dialogue whose premise is whether or not ME is a “real”  or “disputed” condition. Substituting that conversation with one involving a pre-prepared simple description of the illness and reference to the ever-increasing body of international research can facilitate a more constructive discussion.

In this January 2019 critical review of research methods, the authors state the following in their conclusion which, in research terms, echoes what I have thought for many years:

The ME/CFS [sic] research field has been stuck in a somewhat defensive posture, with a focus on demonstrating “this is a real condition” by showing significant biological differences between patients and controls………The field is ready to move past proving “this is a real condition” and to start elucidating the specific relationship of ME/CFS symptoms to neuroinflammation……….Moving past a defensive posture and toward understanding pathophysiology requires careful focus on research methods.

Conclusion

The questions posed in this series are the ones which we now need to address with some urgency. Who will steer the story of the ME community from this point onwards, how will we be judged in the future and can we, by default, allow the current narrative to continue to prevail? It’s not uncommon for a new campaign to take twenty years or more from inception before it begins to achieve meaningful results. Whilst the ME campaign story is not new, it lags way behind its rightful place in history.

Our fate lies in our own hands – individually and collectively. There never is a “magic bullet” – life is far more mundane than that – but methods exist which have yet to be tested. My purpose in writing this series is to raise the possibility of pursuing those methods and considering some of the challenges which would have to be faced. The rest will become history.

How that history looks in ten, twenty or thirty years’ time will depend on the choices and decisions we make now. It’s unlikely this series of posts will change the course of that history but an examination of the issues raised here has been long overdue.

It’s time to change the narrative.

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20 Comments leave one →
  1. Bill Clayton permalink
    January 21, 2019 11:04

    As always, you talk so much sense Valerie. It would be a waste if your hard work was just left as just another post on Facebook. Although we have a number of charitable groups, they all seem to vary in their aims. I would suggest that we need a coming together of these organisations, not to change their direction necessarily, but to consider the points and recommendations you have made, and maybe others that will be brought together as a start point for a coalition which would have a stronger voice for our community. Whilst we have so many groups pulling there own way, I fear we won’t get there.

    Like

  2. January 21, 2019 17:41

    Another excellent article Valerie. Thank you for this series and your constructive ideas. Having steps identified as to exactly what needs to happen in what order is really helpful. I do hope that the various organisations, read this and act upon it, I would be 100% behind this as a way forward. Getting outside professional help in terms of media and having a clear long term strategy is an absolute must and a priority if we are to make progress.

    Like

  3. January 21, 2019 18:24

    This has been an interesting and thought-provoking series. I agree with much of what you say here, in terms of how we need to move forward. (I say “much” rather than “everything”, simply because there are some elements I don’t know enough about – such as how a consultancy works – to be able to have a clear opinion on.) I most definitely agree that we need to step away from arguments over whether M.E. is “real” or not. This is not a discussion that is relevant any more (assuming it ever was) and being repeatedly dragged into it only weakens our cause, especially when conducted on platforms such as Twitter. You are right about the need for a strong, united front that is able to command respect and tell the story as it really is. I sincerely hope that your series will be a catalyst for this change.

    Like

  4. January 21, 2019 21:10

    Is this not something that could be achieved through Forward M.E? I know little about the organisation however it seems there are only 2 existing organisations that bring together M.E charities CMRC and Forward M.E. The former is a non starter for this but why not the latter?

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    • January 21, 2019 21:50

      Thank you for your comment, Samuel.
      I think that, 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 existing groups as, inevitably, they each come with their own baggage.

      Like

  5. Barbara McMullen permalink
    January 21, 2019 23:28

    I’m fully behind this. Hopefully, Canadians and Americans, etc. can follow this example, as well. If this does get formed, I will donate what I can.

    Like

  6. Sarah Lawry permalink
    January 22, 2019 10:25

    Hi Valerie, On the issue of biomarkers, I think a distinction ought to be drawn between the fact that no biomarkers for ME have been validated but that we do in fact have plenty of biomarkers for ME – eg Montoya’s 17 cytokine signature or Robert Naviaux’s chemical signature of ‘dauer’. There is a lack of funding/ will to have biomarkers validated, imo.

    I think you’ve come up against some objections to your proposal due to the fact that the example you used regarding death threats was news to everyone – we simply have not heard of the existence of such a video and find it hard to believe that this example didn’t get used by the BPS group when challenged in court to provide evidence of death threats.

    I wonder when you spoke to your friend who was so misinformed about the situation regarding ‘ME militancy’? I think ‘we’ have gained a lot of ground in the past few years and in my experience most people don’t believe a word the BPS types or Science Media Centre utter. Having a spokesperson won’t negate the problem of who controls the narrative when the SMC continue to flout the laws and ethics of science, journalism and politics.

    As for your 5 point plan, isn’t this what Jen Brea set up? I’m not sure how well it is working. One problem seems to be that any resolutions lack punch – motions get watered down and few people understand that we are dealing with so many issues, not least the fact that we have a retrovirus at play in our disease and that the transmissibility issue is a threat to public health. I doubt a PR agency would be able to grasp the intricacies of our plight which also happens to be the plight of others who have diseases that the governments of the world don’t want to find funds for research or treatments.

    I feel that we should be joining forces with others who are exposing institutional fraud and corruption in the health arena – supporting the work of whistle-blowers such as Peter Gøtzsche, Peter Doshi, Peter Aaby, William Thompson – the list seems endless. We should be drawing attention to the work of people who rarely get MSM coverage and explaining to a naiive public (who in actuality understand our plight more often than not, in my experience) why no-one will debate people such as JB Handley, Robert Kennedy etc. There is apparently no-one in France who is willing to speak about compulsory vaccination – this is surely an indication that those fighting the corruption of science are winning?

    Just a few thoughts. I feel like we have been here before and it hasn’t worked. Why do you feel the ‘Act Up’/ HIV/AIDS campaigns of the 80s wouldn’t be a suitable template for desperately needed change for the ME (and broader) community/ communities?

    Like

    • Alex Young permalink
      January 25, 2019 05:28

      Sarah, a further distinction can be made. We have around 2500 biomarkers now. Many do need further validation. Many of these (often in combination) have a sensitivity of 100%, that is they can totally distinguish between ME and healthy controls. The issue is we lack the research to show specificity, that is that they apply only to ME and not also to some other disease. So we have biomarkers, and we can definitely show pathophysiology, sometimes to sixteen standard deviations from normal.

      We just lack a test that is both proven to be effective diagnostically (though I think the 2 day CPET would qualify) and is appropriate to use (many cannot use CPET, and some have big issues recovering). Ideally we need a blood test, and to my count there are maybe 14 such tests in development, though most of those will probably not work out. One or more might, however.

      So we have biomarkers, we have sensitive biomarkers, we just lack a diagnostic test, something that is provably unique to ME.

      Liked by 1 person

      • Sarah Lawry permalink
        January 25, 2019 08:55

        Thanks for your response Alex. Other illnesses don’t have diagnostic tests with a high degree of specificity but that doesn’t prevent diagnosis or treatment. I’ve just seen the two debates that took place yesterday – one in Holyrood and the other in Westminster. The oft told lie that we have no biomarkers was continually trotted out. I assume that politicians in both cases were briefed by organisations/ charities which are not fit for purpose.

        Like

  7. January 23, 2019 10:39

    Thanks for writing this blog. Creating a media steering group is an interesting idea. I do have some questions about it.

    1) If the media steering group is constituted by a coalition of representatives from the main patient organizations in the UK, wouldn’t that slow things down? If most members have to give their permission to a consensus response, that might take longer than is currently the case. I do not have much experience in this, but I suspect patient organizations are often asked to comment on a newsfact or a new study that came out. In such cases it would be difficult to agree on a response in time within a media steering group. On some subjects there is quite a lot of disagreement between the main charities. In some cases even a “pragmatic consensus” would be hard to achieve. I’m worried that much energy and frustration will be wasted in reaching a consensus, while the benefit of reaching such a consensus is not sufficiently clear.

    2) Working with a media streering group could also water down the content of the response as it has to be a consensus where most main patient organizations in the UK agree on. This could lead to a situation where some arguments are no longer made. For example: in the past some patient charities were rather restraint in criticizing the problems with the PACE-trial and research into behavioral interventions. If at the time, media responses by the ME community were directed by a media steering group, this could have led to less focus on the flaws of the PACE-trial.

    3) “Establishing an easily-accessible centralized media point of contact for dealing with day-to-day enquiries” sounds good. But I wonder if this is really lacking today. Journalists know the main UK charities (which have been around for around 30 years) pretty well and have interviewed and contacted their media spokesmen in the past. With a new media steering group, it could take a while for journalist to know this is the communication person or group they need to contact

    4) Finally: I think most people would agree that the narrative on ME has been dire and that the voice and narrative of patients have not been sufficiently heard in the media. 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. 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? There seems to be some disagreement about the “threats and harassment” –episode (a difficult subject), so I wonder if you could give another example. It would help to visualize how a media steering group would work and how things would be different from now. I think most would agree that newsarticles about whether or not ME is a “real” or “disputed” condition are not helpful. But since this narrative comes mostly from papers and tabloids, it’s not yet clear to me how a ME media steering group would be able to change this.

    Many thanks in advance,

    Like

    • January 23, 2019 16:01

      Thank you for your comment, Michiel. I appreciate the time and trouble you have taken to set out your concerns. Thank you also for your earlier comment on a previous post. I’m sorry I haven’t replied to that comment but my health has been affected by recent events.

      I am still unable to do a full reply now but will attempt to address some of what you have raised. This really merits another blog post in its own right but I can’t do that at the moment so I will park this draft outline here in the hope that it answers some of your questions.

      Most of the points you raise are actually addressed, or alluded to, within the posts, although often only briefly. 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.

      1) The consensus is needed in order to appoint the media steering group (MSG) so that it is delegated to make 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 and how to act on the advice received. The biggest problem is community trust which is currently lacking because of the many internal divisions which exist, in part as a result 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 are happy for the current situation to 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.

      2) Mostly covered in 1) above. I agree about the difficulty of reaching agreement between the charities/groups with their pre-existing views. 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 essential and is absent from current UK landscape.

      Another possibility is to aim for a completely new group co-opted/elected directly from the patient community. 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.

      3) The 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 arrangements.

      Representatives from the media do occasionally approach the current charities and groups for comment or interview, as you say. However, these contacts are usually low-key and/or often only in response to a story that is already out from the SMC. The ME community should be leading the media and generating its own narrative, not simply reacting to stories from elsewhere. If done properly, it will be quite clear to all media outlets how to contact the national ME community media hub (appropriate media events would need to be organised) and the contact would then be managed by the hub on an ongoing basis, not just waiting for the next SMC story to break.

      4) “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 we haven’t done enough to stop it. What I don’t accept is that there’s nothing 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.

      “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. We knew it would be coming and 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.

      “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 counteract those, or any other, allegations. That is a standard part of any ongoing communications strategy

      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 situation such as that – and 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.

      The other crucial element missing from the current situation is professional input and advice. This a complex and long-standing problem which requires highly specialist advice. The MSG would be created to provide a mechanism for seeking that advice and setting up a platform from which to launch a proper media strategy. The MSG is the route for obtaining the advice, assessing it and then directing 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 the 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 communications strategy is based on a pragmatic approach to how the world actually is, not a wish for how it should be.”

      I won’t be able to reply to any more comments now as my health will not stand it. I hope this deals with some of your queries.

      Like

      • January 23, 2019 20:07

        Thanks for answering my questions so extensively.

        I think I now have a better view of what you are proposing.

        If I’m not mistaken the media steering group (MSG) would be a group with a mandate from the ME charities to work full time on media relations. So they would be pitching stories, establishing media contacts, holding press briefings etc. The MSG would be acting pro-actively instead of responding to stories that are already in the press (and have been crafted by the Science media centre). And they would also hire professional consultancy to help with this.

        That latest aspect reminds me of the US situation where the charities hired a professional to lobby for them in congress and within the scientific community. (https://www.healthrising.org/blog/2017/05/05/smci-emily-taylor-me-cfs-professional-advocate/.) I suppose one could also compare it to the International Alliance for ME, which has recruited a professional like Alexandra Heumber to lobby for ME at the WHO in Geneva. (https://me-pedia.org/wiki/Alexandra_Heumber.) As I interpret your proposals, the MSG would be a similar project but with a focus on the media in the UK and instead of a lobbyist, a professional spokesperson.

        Hope I have not misinterpreted your proposals with these comments, just trying to understand it better. Your latest post has given more details and has been insightful, at least for me. I’m afraid many will have already read the third installment without reading these comments. So I hope that, when your health restores, you could work them out in an additional blog post, to keep the discussion going.

        Kind regards,

        Michiel.

        Liked by 1 person

  8. Rob Wijbenga permalink
    January 31, 2019 19:46

    It is obvious that those who doubt your integrity do not know you at all, nor all the work you did to help set Karina Hansen free, which has been invaluable.

    shame on them. actually it confirms the truth of what you stated and tried to explain in episode 2

    I’m extracting and translating your 3 blogs for the Dutch community, as the only thing on which I disagree is that advocacy is nation-bound. Maybe because the British BPS-school is so intertwined with the Dutch one, your statement is less true for the Netherlands.

    But then the Sir and his successors have had great influence on the paradigma of ME all over the world

    Liked by 1 person

    • January 31, 2019 19:58

      Thank you, Rob. Your words mean a great deal.
      I don’t mean to suggest that advocacy is purely “nation-bound” but simply that different challenges exist in different countries, such as legal systems which vary and can therefore affect freedom of expression, defamation and privacy/data protection considerations. Denmark has a far more restrictive regime than the US or even the UK, for example.
      I focus on the UK as it’s what I know best and I wouldn’t presume to tell other advocates in other countries how they should conduct their advocacy.
      Thank you to you for all your ongoing work and commitment to the international ME community.

      Like

Trackbacks

  1. Changing The Narrative #3: Due Process, Engagement And A Pathway (Magic Bullet Not Included) – The York ME Community
  2. Changing the narrative 4: the QMUL judgment explained and some observations on feedback | valerieeliotsmith
  3. Een nieuw verhaal – hoofdstuk 3

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