Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

Things haven't changed since the days of Gilbert and Sullivan:

I always voted at my party's call and I never thought of thinking for myself at all....

...I thought so little they rewarded me by making me the ruler of the Queen's navee.

I'm sure it could be adapted.

 

This problem is largely a UK one, there isn't the same level of taboo in the US for medical professionals to speak out. They're still discouraged from even working on this disease but the censure isn't nearly as strong.

But I have seen far too many comments, usually hush, from professionals in the UK saying they can't talk or raise the issue and can't explain why. It's almost like an Omerta, that if you speak out you may face consequences.

It doesn't even have to be official of spoken. The AIDS crisis was not directed or coordinated by anyone, it was largely the product of prejudice and social enforcement of that prejudice. We know very well that prejudice can overrule every other concern, even legal ones (you don't have a right to medical care if you don't have a medical problem).

So the question is what causes this, possibly organic, social Omerta? Is it just prejudice? I'd say that's likely. But most of the myths that make up the psychosomatic paradigm do not come from the void, they were funded and promoted by government bodies. Very few people want to be among the first to speak out and face the eye of Sauron telling them to quit rocking the boat or else... what?

Those things are self-reinforcing. The lies aren't being challenged because the arbiters of truth are complicit and they seem to be complicit largely because the lies are believed. Messaging will change that over time, it already has to a point, but it's resistance from within medical institutions that make or break everything. In our case there's just always at least that one jerk that insists on his personal belief that it's not real and that nothing should be done about it because it's not even relevant to the field of medicine. That's not just PR since it largely happens in private discussions and rarely explained besides platitudes.

 

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Edited version comment
Sticking my head up in a risky way, I think Valerie does have a point regarding advocacy which is difficult to articulate well but it does resonate, although I’m not sure if it’s equally age /length of service that’s taken the toll rather than gender. It’s true regarding male gender dominance at the top, Before the past few years and SC arriving at AFME, who herself has made no impact AFAIC, all the main groups MEA, AFME, 25% group, MERUK were led by men who’d been doing the role for years, the expert patients have been men and we have been led in the establishment by a quite advanced in years by man Holgate, slowly at it for years too. The approach to me seems to have been chip away, we will get there, through the respectable channels, in the end, notably different to the more bold aspirations in the USA eg Solve ME/CFS and End ME/CFS. ETA I notice others have disputed this and it’s true decades ago before my involvement there was Betty Dowsett and dr Anne macyntire but that is some time past. There is Jane Colby and i forgot about her, there is sue waddle in MERUK and there is countess of marr, although I think whist vocal on some issues she’s not necessarily a radical force and I don’t really recognise MJW or SC or CO as having been really trying to change the narrative in line with what the pwME want. So people can decide for themselves the balance.

I think VES is quite right to say that the main players in the Uk were essentially thinking science would sort and save. The former (male) medical adviser to AFME said on camera at a CMRC meeting, unchallenged, that as the research emerged it would change the landscape around care and decide who should medically look after us, and I think it’s right to say that some had essentially retreated into that position, that we were in a tough place and that it was going to have to be hung on research to change that, despite its slow pace. There hasn’t been, in the ten years I’ve been involved, campaigning on service provision whether against psychiatrists and OTs heading them (an eating disorder psychiatrist is filling dr Bansals place at Surrey) or waiting times, or severe provision, there hasn’t been any lobbying on research funds and theres not been any challenges on name, criteria, only really GET has seen a direct challenge. There was IMO not enough dynamism, no direct challenge to the establishment and crucially no mobilisation of the groaning masses, which was a mistake imo. This might be attributed to not enough female contributions or it might be that the youth is missing. Ultimately whether the conservative, establishment friendly style can be put down to gender is debateable

As Jonathan said it’s great the men have put themselves forward for representing us and there have been successes taking on the science side. It’s of note that one of the most radical actions past ten years was by Alem Matthews for taking on the PACE team but as a woman I’ve often been frustrated by certain things particularly groups heads just essentially running groups as their own projects and not including or delegating on things or mobilising the community and I’ve been frustrated for the approval not challenging the establishment instead “meekly” collaborating and just chipping away at improving the science. .
Spectacular revolutionary Jen brea is American and chiefly a global advocate after her uk unrest visit but She’s achieved more on aspects of narrative with more ambition in a couple of years than the same old was doing over years, partly because of refusing to accept the status quo, clever enough to use media and the community and connecting to the severe to create something moving.
We too now have carol Morgan and the excellent Scottish #MEAction lady too who’ve made strides in areas that weren’t being tackled head on eg changing the narrative from whining patients wanting their illness to be seen as “real” and controversy around that to that of patients demanding health equality as social justice issue and calling for research funds. Other Women abroad who in recent Times are engaging and proactive about changing the narrative are obviously carol head and the dr in Norway who lead the fantastic campaign against huge odds to get a Norway rituximab trial funded .


I think using media and social media to change the narrative is important and that’s only been available recently, #MEAction are filling that role. I see The ME association are looking to do more of that but I think that’s more about engaging the community in their work, than mobilising the community and there’s a big difference. Some believe patients should just leave it up to drs and charities to do all the liasing and represnting and advocacy but I don’t think thats worked.

I do think Uk advocacy until recently whilst patiently beavering away somewhat admirably, seemed based on a seemingly worn down establishment friendly
acquiescence and reluctance to try to look outside of the ways offered by the establishment (CMRC and modifying NICE), patient funded research (MEA & MERUK) and better self management (AFME) . This might be a result of repeatedly running into a concrete wall, gender, age, the type of people charities attracted or wanted involved or might be just personalities and inclinations who did get involved weren’t suited to doing more than a slow evolution based on collaboration with the establishment.

Outside the medical world, We have needed people to be innovative on social media, with a dynamic approach and deeply connected to the severe community to represent them, and that wasn’t there until recently. Men can be stereotypically more into to dry Facts, dry science and not engaging or acting on a human experiencele level which is why a gender balance can be much more preferable. Saying that Zache Nahle absolutely shone as an advocate on every level and I personally loved it when solve had him and carol at the helm. It’s arguable to those who’ve pointed out that AFME is now female led and not perfect, that they’re too lacking in science and detail and rigour but they also have had a strange perspective on moving forward and what the narrative should be that’s only starting to more align with ours eg on oxford criteria etc. Perhaps the female AFME and make MEA should merge and temper and improve each other. Controversial idea I’m sure. Apologies to their supporters who think they’re fine.

I personally don’t think it’s VES intention to offend or divide on gender (we do need all sorts, all types, all talents)
We need men and women, old and young, long term sufferers and fresh newbies, scientists, tech people and creatives so perhaps the general balance was out until recently and Also democracy wasn’t as evident before, it’s been and still is pretty top down, with a few individuals doing everything. But In charities top down is usually fine, ( it’s in justice campaigns it isn’t and we are both) and in a very multi divided area it’s perhaps inevitable that sick group leaders are protective about their work/groups direction and activity . I think it’s going to be patients and carers that change the narrative through #MEA as well as what’s going on officially with NICE and the science. I think there’s so much under used talent, that if encouraged to join forces, be vocal, visible and contribute could make it impossible for the world to continue ignoring ME and accepting totally dodgy narratives about us.

 

I agree with what you say. However, I think the PR side is also very important. Why wait until validation trickles down from the medical professionals? In the modern age of social media and the like we could, and I think should, take a multi pronged approach.

Getting the medical professionals on board is vital. However, changing perceptions of our families and friends could make life a lot more bearable for many of us. We've wasted so many decades, why just sit and wait if there is more we can do?

 

Agreed. It actually comes across as rather out of touch and prejudiced - things that impede effective communication.

 

We'll have to wait for further blogs to understand more clearly what VES is getting at. However, it occurs to me that if what she is thinking of is an historical perspective than I think she may have a point.

If we go back a quarter century (and here I may need my facts corrected) there was the Countess of Mar and
I'm not sure what role Betty Dowsett had to play but her name comes to mind as women who had some role in advocacy. Other than that it seems to me that it really was an old boys club.

And even if any of them would like to claim some victories (whatever they may be) after all these years knowing where we are currently they would appear as scooping out water from from an ocean in need of draining.

I admit that in 25 years there have been changes in the platforms available for use in lobbying for change but I don't think that all of the delay can be put down to that.

Maybe I'm seeing this all wrong and don't have the complete picture but that's my take. There is no way that in the past there could have been what is happening today from a medical research perspective when you consider that newer technologies are at play but it may be that at least some progress could still have been made on that front (possibly robustly eliminating certain paths) and the pychological nonsense challenged with more vigour.

After all there has never ever been any proof that ME is pyschological and there never will be.

Now that there are players on the field other than the OBC it is a good time to take stock of how best to use the momentum we have to achieve the greatest effect with urgency.

 

I don't recognise this characterisation that in the ME community in the UK there have been very few women who have been prominent or in leadership positions in the past or currently.

(Apart from names already mentioned)
In recent times, some names that come to mind:
Invest in ME chairman: Kathleen McCaul (currently and for around a decade)
Tymes Trust head: Jane Colby (for over a decade)
Association for Youth with ME CEO until it folded: Mary-Jane Willows (for over a decade)

There are lots of prominent women in the past also:
e.g. Jill Moss (AYME);

Val Hockey (CEO of the ME Association): Charles Shepherd was something akin to being fired by her and another doctor (a woman, Dr Mcsomething I think) became the medical adviser. Between them, they decided that ME Association shouldn't claim that ME was a physical condition or something equally frustrating which led to a mini-coup in around 2002.

There was a female CEO of Action for ME before Chris Clark (I can't remember her name, but I remember Jane Colby complaining about her).

Dr Ellen Goudsmit, Esther Rantzen (President of AYME), Clare Francis and Dr Anne Macintyre were some that were prominent in the past.

Those are just a few that come to mind.

There were a lot of other individuals who were active on the main discussion lists a decade or more ago e.g. MEActionUK; LocalME; IMEGA-e.

 

I don't necessarily agree with Valerie's points, but is definitely a conversation we need to have and I've been thinking about this issue for years - the overall message, how to accurately represent the diverse views in the community effectively and so on. A lot of people look at the diversity of views as division/disagreement and a lack of focus, and some even suggest it is a reason for lack of progress. But look at a broader view of all the other social movements, the various civil rights movements, the various feminist movements, the AIDS movement etc - there was plenty of embarrassing people and moments, plenty of division, but that did not derail the overall movement.

I didn't take specific action because I lack the skills to do much of the work myself and have not been able to recruit such a team because I don't have the networks. I initially thought ME action was going to fill what I perceived as a bit gap and would help to refocus and reshape the narrative for example, but the community participation has not been as strong as I first imagined, presumably for a myriad of reasons.

As far as the gender balance thing goes, I agree with @Lucibee that this seems to be a false dichotomy of science vs broader perspective.

If there is a shortage of women leading advocacy organisations in certain countries, or an absence of women becoming patient experts and focusing on the quality and quantity of scientific research, the solution isn't less men, as some of the defensive comments in this thread seem to be implying. The solution is for more women to become involved and be supported by the community. This isn't a zero-sum equation, we simply need more people to have their voices heard.

As far as the overall point goes, narratives will only be replaced with something stronger and more compelling. The current narrative has persisted for a very long time (medically unexplained symptoms = psychosomatic has deep roots) and will require strong (scientific) evidence to displace. But the overall picture is that this narrative leads to decision makers at all levels to dismiss the importance of our condition, hence there are negative feedback loops (at various scales) that prevents researchers from being involved, prevents doctors from providing appropriate care, and so on. But there are a wide variety of narratives that exist in a given space, some being more supportive than others, some more popular and so on so there can be iterative improvement, until the dominant narratives are replaced.

 

Nothing our opponents would love more than to watch us bickering about the patriarchy.

If Valerie Elliot Smith has an idea for an additional approach and would like to implement it, I'm sure we'd all be very grateful. And if she'd like to recruit on the basis of gender in accordance with her beliefs that's up to her.

I don't think characterising different approaches as more typically male or female is at all helpful. I'm not even sure the gender split in terms of sufferers is that reliable, and recall seeing it called into question recently, and I don't think it's a solid foundation for VES to build her argument on (whatever that argument is - it's yet to be fully revealed). We need all the help and different approaches we can get, and I'm grateful to all the people who do what they can in various ways.

 

Points 2 and 7 of this helpful summary by @Michiel Tack of a recent research paper:

https://www.s4me.info/threads/estim...arning-2018-proskauer-et-al.7279/#post-134248

 

I think a point VES is trying to make might be that it’s not science alone that can change the reputation of the community so whilst what you say is true it’s also true that important recent figures who’ve helped us David Tuller and Jen brea don’t come from that trained background but have other skills and contributions.

 

Her point seems to be that she thinks men think too logically and that we shouldn't have held back women from being able to advocate and express their superior social skills.

 

Can't really comment on the situation in UK, just wanted to add that from the outside looking in, this supposed gender gap isn't obvious, at least not to me.

Also, sample sizes are so low - the whole thing is likely down to chance. Not to mention the possible bias of subjective observations.

From the outside looking in - I would have thought the major problem for effecient UK advocacy is all the different patients organisations. This must lead to not only several voices maybe not always agreeing, but most importantly (I think) - resources spread out to thin, both money and human resources?

If this leads up to initiating some sort of new media/pr-initiative, I would think it important to be connected to the existing organisations - not fragmenting things even more. But this is speculation.

 

And then, of course, we also have the biggest charity AfME who seems to actively work against patients best interests at times.....

 

Isn't that a charity run largely by women with a very good nose for PR? Valerie Eliot Smith should be careful what she wishes for.

 

Sexism aside, AfME are reinforcing the point about the need to take control though. If it can be done in a cohesive way, even if there are several different approaches/threads to it.

The largest UK charity (I'm not going to call them a patient charity anymore) are clearly putting a government agenda above the welfare of patients. None of the others have the clout to do anything about it.

Can it be done, without it being more of the same? Can the community agree on core messages we need to get across? Then who do we need to engage with and how do we achieve that?

 

I would like to see Invest in ME Research, CureME (Biobank team) and the ME Association join forces.

The MEA to be for patient support,advocacy and fundraising etc, Invest in ME and CureME concentrating on the (biomedical) science and getting more scientists (from across the world) collaborating, and joining the field.

It could give the ME community in the UK something to get behind and create much clearer objectives as well as a less ambiguous state of affairs as to who is working in the patients interest.

eta: not suggesting that there shouldn't be any changes to the governance of the organisations, but that hopefully, between the three, a strong team could be formed.