UK: Invest in ME Conference 2023

Sasha said:
That could be arranged online, though. I think it's time that international academic conferences moved away from flying about all over the place. It's bad for the planet and the need to set aside tons of time to travel, and the high cost of planes and hotels, is a block on getting everybody together who needs to be.
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I agree and I'm sure a lot of that happens. I was particularly pleased that the IACFSME conference last year was held fully online, and the German conference run by Dr Scheibenbogen this year was a mix of online and in person because it meant some patients could watch in real time.

This year's IACFSME conference is back to being in person only.

I don't know though what being fully online was like for the scientists participating. Does getting 30 or 200 scientists in a room presenting their research to each other and discussing it among themselves lead to more productive developments in the science and in collaborations than if they did the same thing on Zoom or equivalent.

Perhaps those present at both the IACFSME conferences last year and this year will reflect on which was most scientifically productive and cost effective.
 
Sasha said:
Not just everyone in the UK but everyone in the world.
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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.

Sasha said:
That could be arranged online, though. I think it's time that international academic conferences moved away from flying about all over the place.
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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
 
Jonathan Edwards said:
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.
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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?
Are scientific conferences truly worth this time and money?

The answer is yes, according to a new Northwestern University study. Scientists who interact with others during assigned sessions at conferences are more likely to form productive collaborations than scientists who do not, researchers found. And the kicker? It doesn't matter whether the conference is in person or virtual.

"Scientific conferences are a very expensive industry," said Northwestern's Emma Zajdela, the study's first author. "People often talk about whether or not we should rethink conferences. Our results suggest that the way organizers design conferences can have a direct effect on which scientific collaborations are formed and, by extension, on the direction of scientific inquiry."

Zajdela will present the study's results at 9:36 a.m. CDT on Thursday, March 17 at the American Physical Society (APS) March Meeting in Chicago. A pre-print of the study is now available online.
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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.
 
Sasha said:
That could be arranged online, though. I think it's time that international academic conferences moved away from flying about all over the place. It's bad for the planet and the need to set aside tons of time to travel, and the high cost of planes and hotels, is a block on getting everybody together who needs to be.
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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.
 
CRG said:
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.
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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.
 
Jonathan Edwards said:
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.
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this encourages me a great deal.

As always, thank you for sharing Jonathan
 
Jonathan Edwards said:
But it doesn't there is always someone new.
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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.

Sid said:
academics getting several free (by that I mean paid by the taxpayer) vacations per year in attractive locations conveniently arranged near the weekend
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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)

Jonathan Edwards said:
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.
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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.
 
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Jonathan Edwards said:
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.
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It would be interesting to hear from the researchers involved in both this year's in person IACFSME conference in comparison to last year's online conference. In that case the conference was not just a set of online lectures.

It was in an online virtual conference centre where people attending 'walked' from room to room, and could see who was sitting next to them in the talks and social spaces and start private conversations with them and could arrange group chats. I just attended some talks, but it was strange and in a way rather nice to find myself sitting in conference halls or standing in queues next to well known ME researchers.

I suspect the barriers to starting chatting to people would be much higher than when in the same real physical space. I wasn't at all impressed with the quality or relevance of most questions asked after talks.
 
Jonathan Edwards said:
Do patients have MS or #MECFS? Myelin Basic Protein (MBP) digest by catalytic antibiotics from ME and HC It appears that about 25% of patients have both


This is unintelligible to me. it is a pity that we are not getting more useful information about the conference.
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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 %)."
 
CRG said:
I realise that an annual conference/colloquium is part of what IIME is set up to do but I do wonder whether it's a model that's past its usefulness. Bringing seven American, one Canadian and four European based researchers to the UK just so they can talk to each other in front of a small audience seems a poor use of resources when the opportunities for remote communications are now so varied and offer better options for broader involvement. And the presence of just a single UK researcher on the panel seems odd to say the least. I guess IIME members get something from it but for a Health Charity it does seem a bit of a 'clubby' way of organising things.
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Andy said:
For all the time I've been aware of them IiME have seemed to deliberately set themselves apart from not only the other ME/CFS organisations in the UK but also the whole research system in general. While I can understand why they may have done that in that past, I think that enough has changed to make it worthwhile working more collaboratively, but obviously they would have to come to the same opinion themselves for it to happen.
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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.
 
Trish said:
I suspect the barriers to starting chatting to people would be much higher than when in the same real physical space. I wasn't at all impressed with the quality or relevance of most questions asked after talks.
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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.
 
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