OverTheHills wraps up our series of articles on this year’s 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Friday the 2nd of June was a big day for me, I’d never been to a medical research conference before, and I’d been looking forward to it as a major life event, no matter what the content. As ME patients we are used to being ignored, abused and denied, or at best fed crumbs, but everything about this conference was First Class.
Top researchers from around the world presented with intelligence and passion and Invest in ME did a terrific job of organising the conference. Everything went very professionally and smoothly.
Olav Mella is on record as saying this is the conference with the most science, and he would be well placed to judge. As a very interested layperson, I found that one or two of the presentations went rather over my head. Most were understandable however and I learned some things, although there wasn’t much new news for people who have followed every research paper.
It was great to see real respect for scientific integrity when negative results were highlighted and their meaning discussed. And it was encouraging to see the spotlight on junior researchers’ development and work.
I’d seen the exciting agenda and knew where I had to go on the day, but the first thing that really struck me (I got there early) was the venue. It was astonishingly impressive, and I’m a bit of an architecture junkie who goes to lots of grand mansions.
It’s got double staircases, high painted ceilings, gilding and chandeliers, the full heritage thing that the UK does so well. And Great George Street is right in the heart of the British Establishment, in Whitehall, very near the Houses of Parliament. Outside I saw brides and grooms from Asia having their wedding photos done and heard the chimes (“bongs”) from Big Ben.
As people registered and got their coffees, the Great Hall gradually filled up and I started feeling the excitement of seeing “our stars” in the flesh. The ever-feisty David Tuller and Olav Mella were there mingling with early-bird ME patients over coffee. I think Yogi said it right on the PR conference thread that it’s like going to the Oscars or the Golden Globes for us patients — we know the researchers’ work and their photographs so well.
OK, I was starstruck, I really did have to suppress the urge to hug several of the researchers at some points during the day. But then I thought if I started hugging them, then a lot of other patients will too and it might get a bit embarrassing … I’m so English!
Then suddenly there was a huge crash of a real life dinner gong and it was time to go into the Lecture Theatre for our first session. Unfortunately, no photos in the Lecture Theatre, but all the conference presentations are available on DVD from Invest in ME.
Now to some of the practical detail about conference attending: the lunch had plenty of choices, some of them suitable even for people with multiple sensitivities (normally I just take my own sushi). Mine was delicious, the staff volunteered to get lunch for “MeMum” who uses a walker and can’t queue.
At tea and coffee time there were cookies for those that can eat them. The air conditioning wasn’t working so well early in the day so many of us patients were hydrating furiously. “MeMum” was also impressed by the sign on the disabled loo which said something like “Accessible toilet. Please remember that not all disabilities are visible.”
The conference is a long intense day, even for a mildly affected patient. I’m glad to say there was a Quiet Room provided for resting between sessions and I heard there was a blow-up mattress in there later (might have been brought by a patient?). In breaks, a lot of the patients who weren’t in the Quiet Room were sitting down quietly in corners. The venue was a bit short of chairs at times. I saw at least one patient sitting on the floor.
One word of advice – I was a complete zombie by the time the conference day finished, and I’m sure many other patient attendees were too. Luckily, I was staying in Central London and have many years experience of Tube travel, so I made it back. If you have no other help, I suggest at least getting a healthy friend to supervise you getting home.
It really was a very international conference — as well as the global spread of presenters I heard Norwegian being spoken in the ladies. Carol Head from Solve ME/CFS in the States was sitting behind me, next to a patient and his mum from Totnes in Devon, and of course I must have travelled the furthest from New Zealand.
And as others have remarked before me it is a very friendly day and the researchers really do mingle with the patients over coffee. Many of the patients seem to have attended in previous years, which is a pretty strong recommendation.
Despite its strong science content, this is a conference with a genuine patient focus. There was a lot of emphasis on severe patients (and not only from Warren Tate and Ron Davis who both have children with severe ME). I was pleased to see a commercial stall in the Great Hall at lunchtime from a Norwegian company which has developed the AV1 anti-isolation robot for students to use. This robot is like an avatar in the classroom, letting them hear and see what is going on in lessons/lectures in real time and speak in class (See website www.noisolation.com)
Some of the researchers are thinking creatively about direct patient involvement in research, which was good to hear about, and the presenters didn’t shirk from the difficult subjects of politics and funding.
Even in this large venue, the 2017 conference sold out, which it didn’t last year. It will be a challenge for Invest in ME to handle the conference’s increasing popularity without losing the personal touch and patient/advocate focus in the future. We got no surprise research pre-publication announcements this year. Perhaps with the success of the preceding researcher-only Colloquium those surprises are less likely to be shared with the wider audience in future.
But the conference was in no way a disappointment. I felt it was an important event where exceptional scientists from around the world shared leading edge and quality science with increasingly connected and effective patients/advocate groups.
The feeling I came away with was pride in our researchers, our community and our charities (especially Invest in ME). I hope to attend next year’s conference.