There is more unity than we often recognise within the ME Community. We are overwhelmingly of the opinion that the changes we need are more biomedical research funding (leading to effective treatment) and our health stories to be treated with respect. Last week we had a couple of significant wins with the PACE tribunal case in the UK and the AHRQ Addendum which “downgrades the conclusions on the effectiveness of cognitive behavioral therapy (CBT) and graded exercise therapy (GET)”in the US. This gave everyone a much needed boost, at last there is a glimpse of a changing tide with the possibility of more accurate depictions of ME on the horizon.
Over the last few months I’ve been thinking about what makes campaigning effective. The recent wins are actually remarkable because they have been so long in coming. There are many passionate ME activists/advocates and yet the press repeat prejudiced views over and over, using terms which are so aggravating to someone with ME that they become a little like hearing the N or C words. We are vocal about the tangible problems with PACE and yet large amounts of the UK funding is still channelled into GET/CBT research.
It feels to me like usually we don’t get the wins expected from the training that is put in. What is wrong with our technique?
In May when I was doing some pre-ME Awareness Day prep I came across this article:
Despite being from a completely different context, it should be on every ME advocate’s reading list. Towards the end it gets particularly useful.
We have been taught to argue in an academic context. For school or university essays you often state one point of view and then state an opposing point of view and then draw a conclusion. For advocacy we need to forget all those conventions. It is not about presenting logical argument. It is about values and emotions. Values trump facts. Every time.
It is about values and emotions. Values trump facts. Every time.
Ultimately it is about the brain more than the conscious mind. How we activate thoughts is to do with synaptic pathways in the brain. These are like maps of our experience.
“depending on the intensity of the experience or the frequency with which it was repeated, would become more or less strongly mapped and, under similar circumstances, usher us toward conclusions about “good” or “bad,” “safe” or “not safe,” without the delay of engaging our much slower conscious mind.” Framing in Race-Conscious, Antipoverty Advocacy
People develop schema about situations and topics
“A schema is a cognitive framework or concept that helps organize and interpret information. Schemas can be useful because they allow us to take shortcuts in interpreting the vast amount of information that is available in our environment.” Glossary of Psychology terms
These pathways or schema are a knee jerk reaction which aren’t consciously chosen (they are usually useful but can include prejudices and illogical negative reactions). Uncertainty can activate Confusion Framing which is an emotionally unpleasant experience we try to avoid.
We can influence schemas about ME though by how we frame our advocacy efforts.
The strategy suggested in the paper can be boiled down to structure your content in this way:
1 shared values
2 the system is broken
3 the problem could happen to anyone
4 this is how you can help fix it
(never be the 1st to mention opposing arguments)
I’ll unpack my reading of this a bit here, but it is still worth reading the original:
1 shared values: This is useful for getting in control of the framing which is activated. Start your blog/email/tweet/facebook post with something that reminds them of a value you share with them. This could be particularly useful if we want to get activists from other movements on our side. For example, we could engage feminists with a shared belief in health equity.
2 the system is broken: We present a way in which the system (NHS, research funding etc) is not delivering our shared values. This is not about a fault in other individuals or about our problem (it isn’t a ‘please help me’). You are alerting them to a systemic problem.
3 the problem could happen to anyone: Although strictly speaking I don’t expect ME can happen to anyone, emphasising how many people it affects or reminding people that they know someone with ME will help here. The point is that the people experiencing the problem aren’t special or unique. Avoid stories about people being brave and disability porn. There is nothing exceptional about us and there are lots of us. This is a big problem. MillionsMissing aces this point
4 this is how you can help fix it: Futility and Complexity are very unpleasant schemas to experience. People try to avoid them without realising. People want to alleviate suffering BUT when a problem is complex people’s opinion can shift to blaming people for bringing problems on themselves to avoid the difficult feelings (Hanson and Hanson). I believe this has happened in ME. We have a complex, multi-systemic condition which has baffled even researchers. Rather than seeing it as futile, and therefore difficult for them emotionally, the public has blamed us (Yuppie Flu, burnout, false illness beliefs, malingering, scroungers etc).
We can probably overcome complexity problems by:
a) avoiding reference to complexity or vague symptoms (‘multisystemic’ is probably OK)
b) avoiding phrases that makes it sound like so little research has been done that they know nothing about it (this is a danger because very little research has been done which we want to highlight as a system breakdown issue)
c) emphasising recent advances – biomarker test in sight, rituximab (probably good to mention that it’s a cancer drug that has effect on pwme)
We can overcome futility by giving a very clear call to action as a conclusion: donate to research here/ sign this petition/ write this to your MP. They have to feel that change is possible (it is folks!) and that they can do something to make that change happen.
(never be the 1st to mention opposing arguments)
I had a lightbulb moment reading the article when I realised where we need to improve our technique: whenever we mention opposing arguments we activate that framing in the public’s mind. We are doing the job of the ‘Psych Lobby’. A key point is never to bring up the opposing argument. The person wasn’t thinking about it before, now they are. At best you activate an uncomfortable Confusion Framing, at worst they think “no I believe the other guy”. For example, “They say it is False Illness beliefs, we say it is neuroimmune” is completely the wrong way to go about it. It is very unlikely anyone apart from us was thinking about False Illness beliefs, now they are and they’re doubting the credibility of your point of view. The point is about who activates the idea in the person’s brain. It is OK to discuss once someone else has brought it up, this isn’t about denying reality it is about being Persuasion savvy. Whenever we bring up an opposing argument we’re reinforcing the point of view we want to challenge.
Whenever we bring up an opposing argument we’re reinforcing the point of view we want to challenge.
If you were writing a blog post about PACE you might plan the structure like this:
1 publicly funded research should provide open data
2 QMUL is resisting release of the PACE trial data despite being requested to do so
3 This has wider implications for any UK research if a precedent is set that publicly funded, anonymised data is not openly available
4 increase the pressure to release the data by signing this petition
(don’t mention anything about us being called vexatious)
Hopefully that argument is now redundant though!
It can even just about fit into a tweet although this isn’t ideal:
Everyone deserves decent healthcare. Anyone could get #MEcfs there are #MillionsMissing to it. Ask for more research pic.twitter.com/VXUZsDZCbX
— Jenny Tips for ME (@TweetTipsforME) May 23, 2016
Persuasion Savvy Challenge
Will you join me in testing this technique out? The key rule is not to be the first to mention opposing arguments. If you can fit in the whole structure even better. We could try this strategy whenever possible until the New Year and see if we’re getting more successes than before. Let me know if you write something about ME or disability that complies with this framing and I’ll share it enthusiastically. Please let other people know about these ideas. This will be more effective as a collective effort.
If you liked this post you might like:
The one with 10 insights from people with ME
The one where I share a horrific experience of paralysis and inadequate healthcare
The one where I tell the NIH what to do
The one where I ask you if you’re disabled
Tips for ME 
Thanks for this, Jenny. I will bear these ideas in mind. I’m sure there is something in them. I have a bit of resistance though. I’ll just bring up one issue. I understand that complexity can be offputting but it seems to me that one of the most important things we need to get across is the complexity of the condition. I’ve read too many articles saying something like ‘scientists have discovered this abnormality so that solves the puzzle of ME and we can develop a cure very soon and not call it ‘yuppie flu’ any more and everything is sorted’. It’s only relatively recently that researchers (let alone the press) have started to realise that any abnormalities they find are likely to be just a small part of the overall problem. I think that mindset needs encouraging as it’s the way ahead. But I don’t think complexity has to equate to hopelessness. We can present a solution in that doctors are now working together to pool information and recent advances in computing and genetics are opening up ways to understand this type of complexity. Indeed, ME is an ideal subject for the use of these new techniques which is very exciting.
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This is a good point. Probably the key thing is awareness that talking about complexity could lead to the public feeling futile/blaming us for bringing problems on ourself. If you sufficiently couch it so they can’t think that you may get away with it. Eg listing the types of symptoms with current ideas about what the cause may be. I think ‘multi systemic’ works as a term because it sounds authoritative and like this is the nature of the condition, not that the nature of the condition is only vaguely known.
An interesting thing I’ve noticed recently is sort of the opposite to what you’re saying: when I’ve explained the rituximab trials to non pwme they’ve been really reluctant to accept that one drug could treat people . They hang on to the idea that it is complex and unknown. There is a belief that ME will always be like that. Rather than that we require better research to get the relevant treatment.
(to be clear I don’t expect one drug to cure everyone, but it is possible for a drug that addresses a root cause to treat a subgroup)
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So perhaps the fact that ME is complex is getting across to people – good! Also, though I see the drawbacks of putting the opposing point of view, I think the idea of injustice being done can really engage people. The true story of ‘the Emperor’s New Clothes’ that is the PACE Trial will appeal to a very wide audience if we can get someone to present it in the national press or media. But that doesn’t mean to say that the bio psychosocial viewpoint has to be mentioned every time we write about ME. I guess we need to think carefully about exactly what we want to achieve with each article.
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Yes that is precisely it. Thinking about what the goal is and how best to persuade people that we are right. We can actually do that without mentioning why they think they are right. Their arguments are too ridiculous to give the time of day to 😉
It isn’t about stepping down from an argument or appeasing anyone it’s about getting our own way. There is no compromise involved. State your argument confidently and ignore any opposition. When disagreement is raised that’s fine, go through all the reasons you disagree.
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