a murmuration

image from belfasttelegraph.co.uk
image from belfasttelegraph.co.uk

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

slides by @coyneoftherealm

JC2 JC3 JC4

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.

JC5

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

what February is all about

Well, my February that is. I assume you may have other priorities, but round these parts February is traditionally the month of panic.

29 Feb, itself a rare day, is international Rare Disease Day. This year our charity is having two events that day- a conference during the day and a political reception from 5-7pm in Parliament Buildings. If you’d like to join us for either our both of these, you can register through the links on our website.

Events mean lists (speakers, contact details, exhibitors) and many questions (where are the lanyards? special diets? did anybody find a template for…?). I visited the venue last week and realised that they remembered our last event there well, because we’d had too many folk turn up determined to display their info and leaflets, and all the tables in the place got commandeered. Pinched from the lounge area, and rooms we hadn’t booked. We both learned – they bought more tables, and we agreed a maximum number. Potential exhibitors will have to book a place and we need to be prepared to be ‘bad cops’ on the day. I wonder could I get somebody else to do that? Would you like to do it?

The morning session will showcase examples of how patients and families influence work in the rare disease world, using the charity’s themes of educating, advocating and innovating. The afternoon session is about problem solving- how can we be creative and actually move things forward? We hope to be discussing a prototype information hub, but we don’t have long left to have the hack day to develop that. Aargh! Someone else is panicking about that. I get tables and car parking and programmes and presentations. Another gets to worry about the big wigs and political shenanigans.

Everybody has something to be anxious about, and we muddle through. There may be bad words under my breath, or spoken loudly for only Jake to hear. There, undoubtedly, will be some chaos and a last minute dramatic near disaster.

But none of that matters. We will be gathering together, those of us who used to be isolated and alone. There will be hugs and giggles and time spent with people who understand. We’ll be talking with those who help us make progress, for everyone affected by rare disease in the region. By gathering together, we will remind ourselves and that we are not alone, that we have much to learn from each other, and that we are #StrongerTogether

Rare Disease Day events are to celebrate, and to raise awareness amongst those who do not live in our world. We will have cake.

vic sponge

you know how this ends

I blame the machines.

The wristband wanted to record my weight and height. I guessed. All the weight lost some years ago has been refound (thanks to volunteering for taking my mental ‘point counting’ energy, and to Lidl’s baked goods and tasty, cheap, wine for taking my willpower). I added in the weight I was when I started Weight Watchers, sure I’d be there or thereabouts. Peak Speccy.

The wristband is mainly to keep tabs on my heart rate, but it counts steps, and I have a daily target. We all know that simply having a random target is a motivator. On a dry day, a wee walk may be considered before collapsing on the sofa with a box set. On a wet day, all bets are off. I’m not daft.

On Sunday, we took a wander to the local museum. We looked at old photographs, and an older Rembrandt.

Rembrandt

We wandered down an elderly, panelled, corridor, and gawped at the artwork from local schools- top scoring in exams artwork. Hard work, inspiration and talent. Go, young people.

It wasn’t a long visit, but it was challenging and thought provoking. I was buoyed and full of energy. Until I followed up on a plan. We’d be passing the sports centre on the way home, so why not call and pay a machine to tell me my height and weight?

Whoever thought that would be a good idea?

Peak Speccy has been surpassed.

There were no hoardes of people, but I was humiliated and horrified. I’d let my weight get away from me again. Equally, I felt ridiculous that I cared so much. I’ve been spending my limited energy doing things rather than recording every mouthful- surely that’s a good thing? But still. I’m too big. My default position is cuddly.

Instead of skipping home, inspired by history and art, I felt every step, and went straight to bed, my place of safety. I needed to lick my wounds, to recalibrate and recover.

Spit.

I’m off for a walk.

a cunning plan

I sleep and lie about. Some days I get dressed. I’m sore and exhausted. My brain works intermittently at best. I worry about doing too much so I do nothing. Then, I do too much. I really am not good at this pacing thing. There are events to plan, meetings to go to, a new network to embrace. All the fun things.

For the last few years there has been a fair bit of talk in the ME world about heart rate monitoring. Some people benefit greatly from attempting to keep their heart rate below a certain level- stopping the boom before it happens, thereby preventing the bust.

That’s always seemed complicated, and a little beyond my comprehension. But recently I’ve begun to wonder. Sally, a local ME blogger and activist, is a natural teacher. She explains things in a way that make sense to those of us with cognitive issues. And she’s been monitoring her heart rate for some time.

At Christmas time, Spurs Fan came into a Fitbit, a wee strappy gadget for his wrist that monitors steps, sleep and much more. He loves it. It’s easy to use. It’s unobtrusive and convenient.

I don’t need all that technology.

I pondered, read Sally’s heart rate post again, and searched for heart rate monitors. They’re mostly expensive, ugly things. (Other opinions are available.) Really, I just wanted something like the Fitbit, but with a heart rate display. And, lo! Such a thing exists. It’s designed for active people, and gym use, but it displays heart rate and sends all the info to the phone for review. Of course, it also does steps, calories, sleep and other things I may never use. I’m hoping I can learn to up my physical activity safely, and to cease and desist in a timely manner. The device is hardly lovely, but was cheaper and less bulky than alternatives. (I could have paid a lot extra for a different colour.)

admittedly, not stylish
admittedly, not stylish
My numbers
Maximum heart rate: 220-50= 170
Safe limit for ME people, 60% of max: 170 x 0.6= 102

 

The fancy tech is charging now. Soon I will be knowledgeable and able to discuss numbers with the best of you. I’m going to do it properly this time.

Until I don’t.