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Invest in ME Conference 12: First Class in Every Way

Discussion in 'Phoenix Rising Articles' started by OverTheHills, Jul 24, 2017.

  1. OverTheHills

    OverTheHills

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    New Zealand
    OverTheHills submitted a new blog post:

    Invest in ME Conference 12: First Class in Every Way

    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.

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    Big Ben and the Houses of Parliament, steps from the venue

    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.

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    Invest in ME Conference registration

    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.

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    Early conference attendees

    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.

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    Mingling at Coffee Time

    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."

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    The Quiet Room

    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.

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    The AV1 anti-isolation robot

    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.


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    Continue reading the Original Blog Post
     
    Last edited by a moderator: Jul 24, 2017
  2. MEMum

    MEMum Senior Member

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    Hi, good to see this posted. Memories of a brilliant day.
    We need to be reminded of these brilliant scientists, researchers and clinicians. This week has been too full of gut-wrenching psychodominance in the UK.
     
  3. Jo Best

    Jo Best Senior Member

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    Thank you for this super finale to your reports on the 2017 conference.
    You give a real flavour of what it must be like to be there in person.

    I understand the DVD sets are ready now: http://investinme.eu/IIMEC12.shtml#dvd

    No Isolation's AV1 robot was also featured by the BBC this month.

    I imagine that increased sponsorship will be vital if these events are to continue growing.
    I know that IiME Research hasn't announced any dates for 2018 but it's worth noting that a conference of this calibre only comes cheap because the organisation is all done for free by a small team of dedicated volunteers doing the charity's work every spare moment of 365 days a year between them.

    On that note, I saw IiMER Bear launch himself on to the world at the conference via Instagram: https://www.instagram.com/iimerbear/ and Twitter: https://twitter.com/iimerbear
    He's a cute and funny and informative little bear, busy keeping his minions on their toes.

    Thank you again and I hope you have no long-term effects from all the exertion involved.
     
    Last edited: Jul 30, 2017
  4. Mark

    Mark Acting CEO

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    Sofa, UK
    Big thanks to both MEMum and OverTheHills for a great job tweeting and writing our articles on the conference. :thumbsup::thumbsup::thumbsup::thumbsup::thumbsup: This last one really brought things to life for me and made me wish I'd been able to be there this year. With the photos as well, I hope it gave people a good sense of what it's like to be at the conference. Hopefully I'll be back again next year - I'm rather looking forward to Fluge and Mella's session at IIMEC 2018! :D
     
    Invisible Woman, Anne, Joh and 4 others like this.
  5. Pen2

    Pen2 Support, Good Medicine.

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    @overwhelms, Thank You. Sharing your experience at the conference was so well expressed that it opened my eyes to how wonderful and valuable our researchers are.

    I am new to PR, Just joined in May. Hearing about this conference and the resources we have now available to us as ME patients is comforting.

    The loneliness of our invisible disease can be overwhelming. Reading the fact that they address this at the forum along with so much more really was something I needed to see today.

    So glad the conference is on DVD. This education is of course so valuable to us. Even if some of it is over are heads.

    I too hope you are not crashed from attending the conference. Or hopefully recovered if you did crash.

    Thank you for sharing.
     
  6. Anne

    Anne Senior Member

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    @MEMum and @OverTheHills , THANK YOU for this excellent coverage of the IiME conference!

    Your articles were better than what I've seen written by professionals this year. Amazing effort, thank you so much!
     
    MEMum and Invisible Woman like this.

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