Changing the narrative #1: exploring a new approach to strategic communications in the ME community
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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Introduction 
This is the first of a series of posts on this topic. A full list of the series can be found here.
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.
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Changing the narrative
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 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 geopolitical region 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.
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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.
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 guidance for “CFS/ME”
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.
[Update 25 May 2020: because of the COVID-19 crisis, publication of the new guidance has been postponed yet again. The update of the 2007 guidance has been left open-ended for the time being. In the meantime, the existing guidance remains in place with its dangerous recommendations of Graded Exercise Therapy and Cognitive Behavioural Therapy still in use.]
The early indications from the NICE review of any real progress towards a significant shift in attitudes are not promising (edited 13/1/19 to add: although the recently-appointed Director of the Centre for Guidelines, Paul Chrisp, seems to be showing a more inclusive approach, according to these minutes from November 2018.) 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.
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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 far from exclusively, of women, that is particularly disappointing. Reported ratios vary widely but common estimates suggest that somewhere between 60% – 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. I have, on several occasions, become so angry and demoralised by the behaviour of some men within the international ME community, that I have seriously considered leaving it altogether.
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, validated diagnostic 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 up squarely to the reputational problems faced by this community.
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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.
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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.
In 2015, 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 would hardly have been startling news that they had found immune abnormalities and/or 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 the dangerous Graded Exercise and Cognitive Behavioural Therapies as appropriate treatments for “CFS/ME” 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.
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Trackbacks
- Post Thirty One. A Blog Post (Mainly) About My Blog – Looking Back & Looking Forward. – puffins&penguins&me
- Changing The Narrative #1: Exploring A New Approach To Strategic Communications In The ME Community – The York ME Community
- Changing the narrative #2: warring factions, divide & rule and death threats | valerieeliotsmith
- Changing The Narrative #2: Warring Factions, Divide & Rule And Death Threats – The York ME Community
- Changing the narrative #3: due process, engagement and a pathway (magic bullet not included) | valerieeliotsmith
- Changing the narrative 4: the QMUL judgment explained and some observations on feedback | valerieeliotsmith
- Een nieuw verhaal -hoofdstuk 1
- FOLLOW-UP to previous post on responses to the draft NICE guideline for “ME/CFS” + the need for a communications strategy rethink | valerieeliotsmith
valerieeliotsmith 
Congratulations, Valerie! I am happy to read this piece, and see someone is trying to make progress on ME advocacy outside the scientific front. I wanted to address this six years ago, then went into a decline which has not turned around. My idea then was, as a start, to set up a press resource that we can promote, one that is highly based on fact and commentary from well established biomedical researchers, plus patient stories the media can tap into, region by region. This was directly aimed at countering the SMC.
There are indeed political, social and cultural factors at play. The science is critical to cure, but the sociopolitical stuff is critical to quality of life.
It is really hard to reach some science oriented male patients or researchers with sociopolitical argument. Similarly its hard to reach some sociopolitical advocates, male or female, with deep science. Both see the importance, but fail to see how they fit together. It took me about twenty years to move from science based argument to deeper sociopolitical argument. I was going to address some of these issues with book I was writing, Embracing Uncertainty, which is currently on permanent hold until/if I improve.
I look forward to reading the next articles.
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Thank you so much for your encouraging comments, Alex, and I agree absolutely with everything you say. I’m so sorry to hear that you have been in such a long decline. I had noticed a significant reduction in your social media presence and that never bodes well.
This is one of the biggest problems faced by the advocacy community; the fluctuating severity of the illness means that robust advocacy initiatives by individuals or small groups of patients tend to be unsustainable because of the variation in severity of our symptoms.
I very much hope that you recover sufficiently to resume work on your book at some point soon. This discussion seems to me to be one of the critical gaps within the ME community.
Wishing you as well as possible.
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Back in the 90s, I think, I was a member of our state CFS and Fibro society. It had over 800 members in total. I was at the final general annual meeting where it dissolved, because there were not enough people to keep it running. All its assets were sent to an allied CFS society. (Back then we had missed the vital differences between ME and CFS, hence the name.) Eight hundred members were not enough to keep it running when key members went into a sustained crash.
Sustaining a campaign of advocacy is only something we have begun to properly address in the last couple of years. I hope this trend to better sustained advocacy continues.
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Geoff and I are one example of how natural and social science can meet and establish tools for improved and reciprocal understanding of what is at stake, unfortunately, as I have problematised in a number of peer reviewed publications, no one with the power to change things at e.g. policy level, listens (yet) which is why the strategy you are discussing is a matter of quite literally life and death. Thank you! While endearing for a little while, it breaks my heart to read comments such as ‘each and every one of us is a campaigner’ in the ME community. Sadly, this is not how it works for all the reasons you’ve discussed in your blog post. The gender aspect is significant, too, sexism is indeed rampant in the ME community just as anywhere else and it does need addressing urgently, as I’ve written and discussed extensively. I don’t see a movement at all on this front, unfortunately, just a few advocates like you and us, Emma Joy, a feminist philosopher with ME who’s very vocal (in a good way) and a handful more who seem to be aware of there even being a major problem.
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I agree 100% with your article. I have felt for a long time, just how does M.E. become something everyone knows about like other big charities e.g. Cancer, AIDS etc? A complete overhaul review IS needed on the Communication Strategy, but how and where to start?
I do not have the skills or experience as you do, but I totally support what you’re trying to do.i look forward to more blogs.
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Valerie, I agree with you that a better media strategy is important. You said that groups for other illnesses have hired PR firms. Which firm(s) would you hire and how would we go about it? If the other ME groups are not doing it, maybe a new group should be formed with a focus on PR. What do you think?
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Thank you, Barbara. There will be more on this in a later post.
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Thank you for writing this post Valerie. it is very much needed. It is something that I have reflected on for several years, deeply frustrated by the current situation and how powerless and impotent we seem to be as a community in this regard. It seems it is one step forward then one step back, in what can seem like a never-ending circle. A professional, well orgainsed and orchestrated media strategy is so badly needed for our community and this, in my opinion, should be a priority in terms of raising funds in order to mobilize change. As you say, if we change the perception and attitudes to this disease it will have a snowball effect in all other areas, political, funding for research, health and social care. I am looking forward to reading your next post.
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This is spot on, thank you. I come relatively recently to ME, and to ME activism. I was an HR and Self Development specialist with experience of strategy, and recently approached an ME organisation about volunteering with them as a way of using my not inconsiderable experience in a constructive way. They ‘lost’ my enquiry, apparently, when I chased it up a few weeks later. I changed my mind. If they cannot manage basic admin, I’m not sure that I’d be of any help to them. The ME advocacy scene seems to me to be fragmented, at best; it’s difficult to work out who does what and what their orientation and approach might be. It may well be more unified than I’ve been able to see, but if it’s confusing to people like me, it must be significantly more so to people outwith this environment. There is a need for a clear and unconflicted message, and a history/story of the movement’s development that is concise, factual and unemotional. And I suspect that’s the tip of a very substantial iceberg.
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Excellent. I very much look forward to the following parts.
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Thank you, Naomi.
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Hi Valerie, I notice the reference to ‘institutional abuse’. I am looking for academic or legal definitions/discussions on institutional abuse as it realities to the 18-65 age group as I advocate for recognition & care.
I would really appreciate any references you have to hand.
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Thank you for your comment, Christine.
I use the term “institutional” here in a general sense but basing it on the term as defined in the 1999 Macpherson report on racism ie. discrimination that has become established as normal behaviour within a society or organization.
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As someone with journalism experience, do you think it is worth forming a coalition of the various organisations/charities around the world to develop and promote formalised media guidelines specific to ME and CFS?
This would at least provide a clear rebuttal to the media claiming they are “just reporting the news as factually as they can”, when we suggest they are misrepresenting the research and/or patients views.
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Thank you for your comment, Snowy. There will be more about this area in a later post in the series.
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Hello Valerie, Thank you for bringing your knowledge and experience to the beleaguered ME community. I totally agree with what you say.
In my long history of ME (30 years) I have often contemplated how all efforts have been focused on research and been reduced to despair by the total absence of any effective media presence. The lack of any kind of authority or presence of the ME community in the public domain resulted in the vulnerability of the ME clinicians and scientists and they were systematically squeezed out. For decades we have all endured one drubbing in the press after another without any visible defence, and claims about ME patient activists have become more extreme as time has gone on. I recall how MS was in a similar position in the 70s and how the perception of that disease was turned around practically overnight in the UK by a huge and very clever poster campaign. although unaffected by any ill health at the time it made a huge impression on me as the posters were so striking and unforgettable. We need modern equivalents to that as public opinion and support is what changes things, science cannot do it on its own.
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Hi Valerie, I’d like to draw your attention to the paper by Ila Singh (2010) which found approx 25% of 178 breast tissue samples positive for an HGRV. This is a retroviral paper that was not retracted, wholly or partially. Unless someone addresses the underlying cause of many of the illnesses/ diseases plaguing the world currently, the farce will continue.
According to Dr Judy Mikovits, the retroviral associated illnesses concerned include the following:
Cancers: Prostate*, breast*, multiple myeloma*, non-Hodgkins Lymphoma*, chronic lymphocytic leukemia*, mantle cell lymphoma*, hairy cell lymphoma*, bladder*, colorectal, kidney*, ovarian*
Auto-immune diseases: Lupus, Crohns*, Hashimoto’s thyroiditis*, poliomyositis, sjogren’s syndrome, Bechet’s disease*, primary billary cirrhosis*, IBD*, psoriasis, dermatitis
Central Nervous System: ME/CFS*, Gulf War Syndrome*, autism/ ASD*, MS*, Parkinson’s*. ALS*, Fibromyalgia, Chronic Lyme disease*, OCD, ADHD
* denotes reverse transcriptase, retroviral sequences or proteins, antibodies to retroviral proteins
I will read the other blog articles in this series asap. Many thanks for your efforts. Regards, Sarah
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You can join this discussion-
https://www.s4me.info/threads/blog-changing-the-narrative-1-exploring-a-new-approach-to-strategic-communications-in-the-me-community-by-valerie-eliot-smith.7538/
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I totally agree, unfortunately people who have ME /CFS struggle so much to exist find it difficult to fight for their community. I was chatting to a few people earlier and I was saying I’ve been ill for 26 years and I finally saw a Consultant a few weeks ago but all he could offer was more medication!
Many people on the forum like myself have been ill for decades and seen very little change. We all live in hope but the way things are going I will be dead before things change.
Maybe MPs need to know how long people have been suffering with no help. They would be amazed how many people have lived in pain and suffering for not just a couple of years but 40 years. Not forgetting all the people who have died or committed suicide!!
It’s almost like putting us in jail and locking the door and never seeing day light again. How would they feel? They wouldn’t treat their pets like this…. Shame on all politicians!!
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Although decent science is ultimately what we need, I agree that pro science types can misunderstand that the quoting of science isn’t necessarily what leads to getting the research done. We need the public to feel solving ME is important in order to get funding and equality. We need people onboard who understand how Persuasion works, and it isn’t rational. I wrote a bit about this here https://tipsforme.wordpress.com/2016/08/23/persuasion-savvy-advocacy-challenge/ have you read the paper I mention in that post? it’s from a legal context.
BTW I think the point of ME advocates looking to AIDS activism is precisely because it has gone in a different direction. Despite having a similar condition (the immunologist who diagnosed me was also a HIV specialist), and even greater stigma, they have been really successful at getting research money and raising awareness. What have they done differently? Can we apply and adapt that to our context? These seem like sensible questions.
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Thank you for your comment and the link, Jenny. I will take a look.
The third post in this series will address your other points.
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I absolutely applaud your aims and wish you the very best with it. An observation. I spent 30 years in marketing, reputation management and comms before getting ill, and much of that involved bringing together different viewpoints to try and create a message agreed by all parties. Most often, it was only some parties, and at best, most parties. Often, people only got on board once the messaging was a success. For this reason, I think achieving a consensus among ME patients and groups might be an unrealistic aim, at least initially. I would suggest aiming for the key issues and key media relationships, and not worrying too much about what the different groups think, or the push-back you may receive. Once you have some traction, you’ll find people getting on board. This is what happened with Jen Brea’s project. Once she had the film made and was ready to go out on the wires, she reached a tipping point and a lot of people suddenly supported her. It was lonely until that point. If I was leading this, I’d initially focus on what to call the initiative. You’re going up against the SMC, so you need something memorable as an alternative ‘brand’. Something with a strong name and identity to challenge the SMC; something people can name easily. At the moment, I think of it as the Valerie Eliot Smith comms initiative, because that’s what it is, but you need something catchier. Jen used Canary in the Coal Mine, which, of course, morphed as the project matured, but it was great as a rallying point. I really hope this gets the support it deserves, because heaven knows, we need it. All best wishes.
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It seems like the time is over ripe for this strategy now, & since NICE has decided to pause the Guideline in a seemingly lawless manner. What is needed first?
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Thank you for your comment.
I have set out the strategy in a number of subsequent posts, the latest of which is this one from July 2021 https://valerieeliotsmith.com/2021/07/05/beyond-the-nice-guideline-mecomms-and-the-case-for-a-public-inquiry/
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