Get a Ringside Seat for Invest in ME’s 10th International Conference on 29 May

Sasha submitted a new blog post:

Get a Ringside Seat for Invest in ME’s 10th International Conference on 29 May

Sasha and Simon preview the attractions and tells you how you can watch it unfold ...

This Friday, 29 May sees the tenth International ME Conference put on by UK research charity Invest in ME (IiME) in London. The day-long conference will include 220 participants from 17 countries and will be attended by researchers, clinicians and patients.


The conference has grown from small beginnings to being one of the most important events on the international ME research calendar, not least because it’s preceded by a two-day, invitation-only research colloquium — now in its fifth year — where some of the world’s top ME researchers can put their minds together and make things happen.

IiME used their 2013 colloquium to gather researchers who might be interested in a UK replication of the exciting rituximab trial results seen in Norway and their initiative paid off.

A University College London team, led by Jo Cambridge and advised by Emeritus Professor Jonathan Edwards, took up the challenge to do a UK trial and IiME began a wildly successful, ongoing crowdfund for the research which has raised a spectacular £380,000 ($590,000, €530,000) so far.

So, we can expect big things. The colloquium happens behind closed doors but the conference doesn’t, and Mark Berry from Phoenix Rising will be in the audience, preparing an in-depth article about the research (his 2013 coverage is here, and 2014 here and here). He and others will be tweeting for Phoenix Rising so that you can follow the presentations live.


Professor Olav Mella (left) and Dr. Oystein Fluge

The stars of the show are likely to be Oystein Fluge and Olav Mella with the latest from Norway on the new, multi-centre rituximab trial, with Jo Cambridge reporting on B-cell profiling aimed at identifying likely responders in the forthcoming IiME UK rituximab trial.

Other highlights include John Chia on how enteroviruses might cause ME/CFS, Mady Hornig on markers of immunity and metabolism, Betsy Keller on molecular markers before and after exercise and Louis Nacul on ME/CFS population rates.

There’s also brain-immune communication, proteomics explained, an update from Down Under by Sonya Marshall-Gradisnik, and Amolak Bansal on better diagnosis. Professor Ian Charles will deliver the keynote address, on what a research park can do to solve a chronic illness.

The full programme is as follows:

08.55 Dr. Ian Gibson Conference Opens
09.05 Professor Ian Charles (Keynote Speech) Solving ME: What a Research Park Has to Offer in Resolving a Chronic Disease
09.30 Professor Mady Hornig Markers of Immunity and Metabolism in ME/CFS
10.00 Professor Jonas Bergquist Proteomics in ME/CFS
10.25 Refreshments Break
10.50 Dr. Luis Nacul Incidence and Prevalence of ME
11.15 Dr. Amolak Bansal Diagnosis and Differential Diagnosis: Combining clinic and research
11.45 Professor Sonya Marshall-Gradisnik, Dr Don Staines (To be confirmed) Update from National Centre for Neuroimmunology and Emerging Diseases - NCNED
12.15 IiME Projects Student Researchers: The Next Generation
12.40 Lunch
13.40 Dr. Jo Cambridge B-cell biology and ME/CFS
14.05 Dr. Neil Harrison Immune-Brain Communication and Relationship to Inflammation
14.30 Dr. John Chia ME and Chronic Enterovirus Infection: An Update on pathogenesis.
14.55 Dr. Claire Hutchinson Biomarkers for ME: Visual Processing and ME/CFS
15.20 Refreshments break
15.50 Professor Betsy Keller Molecular markers before/after exercise /Activity guidelines to avoid symptom flares
16.15 Dr. Oystein Fluge, Professor Olav Mella Multi-centre Rituximab Clinical Trial for ME/CFS
17.10 Plenary Will ME Be Treatable/Cured?
17.30 Dr. Ian Gibson Adjourn

Until 31 May you can get an ‘early bird’ price on Invest in ME’s DVD of the conference, which will be released in July.

And, of course, feel free to donate to IiME’s research! They have a general biomedical research fund, a rituximab trial fund, and a fund for a study on the gut, looking at the microbiome and gut-wall permeability (‘leaky gut’).

This is a small charity that punches well above its weight and is well worth supporting.

So, we’ve got something to look forward to on Friday — and don't forget to tune in for Phoenix Rising's live tweeting from the ringside.

Let’s hope for a conference to remember!



Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

Continue reading the Original Blog Post
 
Last edited by a moderator:

Comments

Agreed on the suspense :) It is important the colloquium is a closed two day meeting so the participants can speak completely freely and gain the most benefit from it - would love to be a fly on the wall though!

Just heard from Invest in ME that it's going well and they have 220 participants from 17 countries. Not bad for a small charity with a big cause.
 
Agreed on the suspense :) It is important the colloquium is a closed two day meeting so the participants can speak completely freely and gain the most benefit from it - would love to be a fly on the wall though!

Just heard from Invest in ME that it's going well and they have 220 participants from 17 countries. Not bad for a small charity with a big cause.
Yes, I agree the colloquium is best as a closed meeting but I'd love to be the fly on the wall next to you!

That's a spectacular attendance - very impressive indeed.
 
P.S. IiME are now tweeting on day 2 of the colloquium, as well as continuing to post in their Facebook group. There is more content (including photos) from day 1 on Facebook, here's the BRMEC5 thread started yesterday - https://www.facebook.com/groups/5804522506/permalink/10152916558012507/

I believe both are publicly accessible without needing to sign-up. Their twitter page https://twitter.com/Invest_in_ME and Facebook https://www.facebook.com/groups/5804522506/
 
Why isn't there any patient representation at the "two-day, invitation-only research colloquium"?
Surely patients should have a voice and a say into how and what research is conducted into our disease?
 
Why isn't there any patient representation at the "two-day, invitation-only research colloquium"?
Surely patients should have a voice and a say into how and what research is conducted into our disease?
Patient involvement is ongoing and is also implicit in the fact that these events are organised by a charity that's run by patients and parent/carers. The focus of 10 years of conference day (IIMEC) has been on patients, clinicians and researchers discussing and working together, whereas the colloquium (BRMEC) is a development from that and is an opportunity for the researchers themselves to get down to the business of discussing work and planning collaborations. This format is working very well for patients, going by the outcomes of the past 5 to 10 years.
 
Last edited by a moderator:
What patient oversight or involvement is there into any of this? I only ask because I'm not a big fan of the paternal top-down "this is what we think is best for you" model of research or charity. I believe patients should be involved / consulted at every stage including research.
Invest in ME is a small grass-roots charity run purely by volunteers. The people who run Invest in ME have the illness in their family. The conferences have been occurring for a number of years now, and it's possible to buy DVDs of the conferences. The DVDs have been an invaluable source of information for me, especially in the early years of my illness when I was struggling to find information or connections with people who knew about ME.

Invest in ME are very focused on supporting patients, and in achieving useful outcomes. They are constantly in touch with patients and do a lot of work for the patient community, and unseen work for individual patients.

The colloquium came about organically, because the conference organisers found that the attendee researchers were developing useful relationships and powerful research alliances through networking at the conference, so they decided to set aside some formal time to enable and facilitate further networking between researchers. They've obviously found this to be a very productive part of the conference as they've extended it to a two day event this year, with a large number of researchers present by the sound of it.

I hear what you say about patient involvement, but this is a privately organised event that works for the organisers and attendees. Invest in ME find it to be a highly successful format, where researchers can network, swap notes, share their confidential results, form relationships and alliances etc., in a fairly private setting. It works, so I guess they don't feel a need to change it. As far as I understand, it's not so much about organising research, per se, as allowing researchers to get to know each other and to build friendships and partnerships. Clearly this works very well in the current format.

I forget which researchers have met and built partnerships at the conference in the past, but there have been some very well known ME researchers who have met there and formed relationships. Invest in ME thought that there was great advantage in this for our community, so created more time and space for this networking to flourish.

Invest in ME has a great deal of good will from patients in the UK. They're not a corporate type charity.
 
Last edited:
I just want to mention that there is at least one patient representative present at the colloquium, Lisa Forstenius of RME Sweden ( = the Swedish ME association, which is a member of European ME Alliance and Nordic ME Network).
Thanks Mango! It's great that at least one patient was there. It's a shame that there weren't any UK patients invited though.
 
This is great... I've just come across this, so I thought i'd slip it in this thread...

It's for UK residents.

You can donate clothes & accessories to benefit Invest in ME. (Invest in ME get £200 for every ton of clothes/accessories donated.)

I'm always wondering what to do with unwanted clothes - because I can't get to charity shops at the moment, and it's always a hassle to carry a big bag of clothes into town anyway. (Not that I have an extensive wardrobe, but I don't like throwing old clothes into the bin.)

This company will provide you with a bag and then collect your clothes by courier, via appointment, direct from your home or work.

Seems like a great scheme.

This is Invest in ME's page:
http://www.clothesforcharity.org.uk/charities/donate/invest-in-me/

And general info on the scheme can be found on the homepage:
http://www.clothesforcharity.org.uk


Edit: it's rightly been pointed out to me that £200 per ton of clothes isn't a massively beneficial deal. It's better than nothing, but it's not a huge amount. So if u have good quality or expensive items to get rid of then it might be wise to try to sell them on eBay, or find other ways to sell them. I've been told that even ordinary second-hand clothing can make a bit of money on eBay. I was thinking along the lines of using the service for clothes that I would otherwise throw out or take to a charity shop.
 
Last edited:
This is great... I've just come across this, so I thought if slip it in this thread...

It's for UK residents.

You can donate clothes & accessories to benefit Invest in ME. (Invest in ME get £200 for every ton of clothes/accessories donated.)

I'm always wondering what to do with unwanted clothes - because I can't get to charity shops at the moment, and it's always a hassle to carry a big bag of clothes into town anyway. (Not that I have an extensive wardrobe, but I don't like throwing old clothes into the bin.)

This company will provide you with a bag and then collect your clothes by courier, via appointment, direct from your home or work.

Seems like a great scheme.

This is Invest in ME's page:
http://www.clothesforcharity.org.uk/charities/donate/invest-in-me/

And general info on the scheme can be found on the homepage:
http://www.clothesforcharity.org.uk
I wish I'd known about that before (not that I have a ton of clothes!). I wonder if it's a new thing for them?
 
The stars of the show are likely to be Oystein Fluge and Olav Mella with the latest from Norway
Haha, they don't look much like stars! :D

But I'd love to have an autographed copy of that photo to hang on the wall! :D:D
 
I wish I'd known about that before (not that I have a ton of clothes!). I wonder if it's a new thing for them?
I only came across it today, so I think it's very recent. I haven't seen them promote it much - I've just seen one tweet about it so far.
 
Haha, they don't look much like stars! :D

But I'd love to have an autographed copy of that photo to hang on the wall! :D:D
I don't know, I think they look quite starry! But as long as they know what they're talking about (which they do!) I'm not too bothered! :)
 
As far as I understand, it's not so much about organising research, per se, as allowing researchers to get to know each other and to build friendships and partnerships.
Speed dating for researchers! I think it's a brilliant idea. It's certainly more useful than 30 years of NIH bleating, "There's no researchers to fund"
 
I believe the rituximab trial got into action at one of the colloquia. @Jonathan Edwards can correct me if I'm wrong.

A talking shop like that for researchers is crucial. It's where ideas get swapped and alliances get forged.