UK: Invest in ME Conference 2023

Thanks, Binkie. The report doesn't seem to contain much of any substance, though - has anyone seen one that does?

 

When I was involved with IiME I advised them to focus a conference on local researchers in the UK and maybe Europe because a lot of the high profile world figures seemed to be more mouth than trousers so to speak. We desperately need some collaborative community spirit in the UK. But it didn't suit.

Building creative research out of collaboration does not work unless you are face to face and preferably relaxed over a meal or on a bus to a social trip on a meeting letting your hair down. I recently went to an academic meeting that was worth it just for sitting down to lunch with one person and having a coffee break chat with another. I agree about the damage to the planet but the way to get round that is to stop meetings being focused around professional politics and reduce the delegate number from 3000 to 30. That is what IiME does very well.

 

With regard to streaming conferences, the Invest in ME link wrote the following


"We had not had resources, including financing, to set this up in the run up to the event but eventually managed to find some way that could be arranged with the resources we had.

The team spent part of the night prior to the conference preparing to stream the event even though not entirely happy that we had been able to prepare thoroughly enough.

On the morning of the conference we completed preparations with the local AV team and then informed some of the researchers - and were surprised that there was not universal support to stream the event. However, we can understand why. So, in the interests of harmony, we had to make a snap decision and elected not to do this.

We had already made and funded plans to have a professionally filmed video of the presentations made.

The conference video will be available as soon as we can receive it and will be made available, for free, on our web site - click here"

It seems it's not straightforward to go ahead with streaming. Maybe the scientists need to get together to discuss this with the organisers well before the conference.

edit: sentence omitted

 

But if the process just involves the same small number of people reprising the same approaches that have done little to advance solutions to the problems being investigated, then the whole thing is just performative.

I suspect that there may be a generational aspect to the benefits of virtual versus real world contact, there's researcher claims that this is so:

Are conferences worth the time and money?

Dynamics of social interaction: Modeling the genesis of scientific collaboration

Abstract
Collaboration plays a key role in physics and in the broader scientific enterprise. Here we develop a mathematical model for predicting new collaborations. We demonstrate that a simple ordinary differential equation model is a good fit to a data set that tracks collaborations resulting from four series of annual conferences on diverse scientific topics, 12 conferences in total over a period of five years. The model, inspired by the physics of catalysis, attempts to quantify the time-varying probability that any pair of individuals will initiate a new collaboration. It takes as input the pair's prior familiarity with one another as well as their pattern of interaction over time, and incorporates the effect of temporally decaying memory. This model accurately reproduces the collaborations formed across all first-year conferences in the four series and outperforms seven other candidate models. We also find evidence that prescribed interaction can lead to novel team formation, with observed collaboration probabilities increased by almost an order of magnitude. These results suggest that encounters among individual researchers at conferences, including encounters engineered by organizers, play an important role in shaping the future of science.

 

You’re right. There’s nothing that happens at these conferences anyway, other than academics getting several free (by that I mean paid by the taxpayer) vacations per year in attractive locations conveniently arranged near the weekend. This conference travel is in addition to the obscene amount of vacation time they get compared to people in the private sector.

 

But it doesn't there is always someone new. They may be a shy postdoc sitting at the back who asks one intelligent question that shows they can see what matters. They may be an older academic with contacts in other areas who sees a connection worth funding. For me contacts with James Baraniuk, Travis Craddock, Chris Ponting, Fluge and Mella and the ME Biobank team made a huge difference - and things happened as a result. All of that started with small sessions at IiME for me.

 

this encourages me a great deal.

As always, thank you for sharing Jonathan

 

There also has to be a discipline in online sessions (only one person speaking) that's completely different to what happens in conference breaks. People coalesce into small conversation groups, and they also overhear snippets of the other conversations going on around them.

It's not unusual for collaborations to start in these gaps, sometimes years later when an opportunity comes up. For instance, if I hadn't been party to a conversation in a lift at an arts festival, two organisations and their audiences would have missed out on several co-productions* and hundreds of thousands of pounds (big money for us) in grant funding. Neither of us could have produced that work without the expertise of the other.

Conference can be hard work, not least because of the effort that goes into the networking side. I was in a different sector, true, but in 35 years I never attended one that was a holiday. Usually it was several consecutive 12- or 14-hour days, bookended by long, tiresome journeys.


* of plays for young people

 

Just skimming so apologies for only picking up one thought and rather off-topic (Mods feel free to move my post)

So don't you think S4ME proves that it's actually possible to 'build creative research out of collaboration' without meeting face-to-face?

At least we have the community lounge and other not merely factual exchange also on the research and methodology forums.

I see the point that's never the same quality as a face-to-face meeting.

But actually, I am currently musing about the idea to have an online conference that doesn't exclude pwME who are too ill to attend a meeting in person and also too ill to talk long enough/ repeatedly to have a proper conversation, so would have only exchange by text and images that could include power point presentations. Something like a slow-paced, very-part-time conference that lasts a months or so and there are some simple rules for both the presentations and the discussions (how often/ long people can post).

Similar to how some threads and subforums on S4ME work, e.g. the comment to the NICE guideline draft scope and to the first draft. And perhaps have threads with simple games like we have in the forum's community lounge to have a non-formal meeting place too?

It's probably more difficult for genuine biomedical research which this thread is about, but could be tried with a conference on methodological topics?

Actually, I just was about to propose to consider the idea to have a true patient-led online conference on useful outcome measures for clinical trials when I skimmed through recent threads and stumbled across your post.


Edited to add:

I don't think such an very-inclusive conference should completely replace other conferences / meetings/ projects, just suggest it could be a good addition.

 

Email exchanges are something different. What does not generate collaboration is a conference by video or a lecture where you cannot chat to the person afterwards.

 

I just looked into this because people are now tweeting that 25% of ME patients have MS (and including Ron's slide). I think this is really poor from Ron.

I have replied to the tweets in question.

"This is almost certainly nonsense and, IMO, shouldn't be shared. This assay is not used to diagnose MS (as Ron actually points out in the video). In fact these autoantibodies are found in patients with other diseases, and can even be found in healthy controls.....

"When Ron says "25% of the patients have this," he’s probably referring to presence of this autoantibody. That absolutely does not mean they have MS, because that’s not how MS is diagnosed. The line at the bottom of the slide is vague and should be clearer.

"I suspect we’ll probably not hear much more on this, and that the rate of MS in ME patients is nowhere near 25% (and likely ~ a few %)."

 

Agree with both these comments. They seem to take pride in standing alone and doing everything by themselves. We don't need that now, we need to come together. There's no need for lots of different micro-conferences. Ideally there would be one or two large conferences per year in the UK to bring everyone together, not just different subsets of researchers who stay loyal to a particular charity/conference.

 

It may be that in time e-technology will make it easy to shift seamlessly from virtual attendance at a conference to a productive email exchange and actually result in a collaboration. (Collaboration is not the only thing. I am not actively involved in research but meeting people has allowed me to get the information I need to provide meaningful testimonials for researchers and their projects. I have acted as referee for continuing employment or promotion for instance, and acted on advisory boards for projects that have been funded. )

But maybe think of it like this. If you are going to find someone to set up a research collaboration with the process is a bit like deciding who to collaborate with in producing a garden exhibit for the Chelsea Flower Show. (Or a cooking partner in a Masterchef episode.).It has to be someone with similar ideas on design, or at least compatible, with a temperament you can cope with, someone you have confidence will not screw up the dahlia planting or let the pansies wilt the night before. Would you set up a partnership of that sort without having met the person face to face? Research is a very practical business. It is also very often done badly and thinking is often muddled. Sometimes you can tell from a lecture if someone would be a potential collaborator but scores of times at the coffee break when I have met the speaker I have changed my mind. A huge amount of presentation is recycling other people's stuff and people can do that without actually understanding any of it.