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:
— 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.
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