Sitting in traffic at the weekend, I was watching a murmuration of starlings by the river in Belfast. It was a fantastic sight. Wee birds would turn up and join in the flock, swirling off in the group, directed by forces unknown. There was no leader, no obvious direction of travel; just a large group doing what it needed to do before roosting.
This article discusses some of the research on murmurations, and how knowledge is being advanced in new ways due to citizen scientists. I’d never encountered that term until Sunday, and here it is again. Citizen science seems to be a feature of natural history research, astronomy and environmental work, and is far from new. I am, as so often, behind the times.
I was introduced to the term by Prof James C Coyne, who was in Belfast to give a talk “The scandal of the £5M UK PACE trial for ME: what can be done?” The PACE study promotes the view that ME patients can recover if they gradually increase their physical activity. It’s based on the notion that the debility of the disease is due to ‘fear of activity’ and subsequent deconditioning, despite extensive evidence to the contrary. This work underpins the medical and social treatment of ME patients in the UK.*
Coyne identified many issues with the trial, and the resulting invalidation of patients. In a previous post I referred to the description of us as ‘dangerous, activist nutcases’- there’s more of that guff out there than we’d like to think.
slides by @coyneoftherealm
I’d been anxious about attending; apart from the ‘listening to a worthy scientist talk about research’ issue, I’d have to negotiate driving, parking, being sociable, and all the other things associated with leaving the house. How was my addled brain going to cope?
I need not have worried. Coyne was relaxed, informal and scathing. He makes no claims to be an ME expert, but he knows more than a little about research methods, and described PACE as ‘strikingly bad’ & ‘a train wreck’. He’s a guy who takes no nonsense, and PACE is full of it.
For me, the heartwarming bit was his recognition of how patients have been blamed for their ongoing ill health. He made the comparison with cancer patients- the notion of a ‘good attitude’ improving cancer outcomes has long been discredited. The group were challenged, inspired and motivated by his assertion that the treatment of patients amounted to a civil rights issue, and would be addressed as such in the US. The so called ‘dangerous activist nutcases’ looked at each other in some surprise. Did he mean us? Well, actually, yes, he did, and he should have. We sat up straighter, we who are used to being ignored, blamed or ridiculed. We held our heads up and wondered what we could do about it, this attitude that is a societal problem and not a medical one.
Community building, pulling together & putting aside differences in diagnosis; these were the approaches suggested. He reminded us that this corner of the world has a history of solving problems- a rather optimistic view, since we’re very good at creating problems out of nothing, but we let it go. The room buzzed with energy and ideas.
People will join together and do what we need to do. There is no ‘leader’, no ‘twitter army’, just a recognition from the outside that this group has been badly treated. A recognition that citizen science (by other ME patients, I’m way too vague to make head or tail of it) has brought a lot to the debate, and is valued.
That’s all it takes to inspire it seems- to see the truth of a situation, to join in, and to offer to help. We may never be forceful, but I’d settle for being awesome, like that murmuration.
*this paragraph includes edited excerpts from MEaction.net