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
 
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Comments

"And also thank you to all our patients. Those who are here and those who aren't here.
Because Most of our ideas are in fact derived from listening to patients.
It's a good thing for doctors to listen to patients [*cheers and applause*] because what they tell us is the truth."
It's our problem to try to derive what is underlying what they tell us.
What mechanisms are underlying what they tell us.
Because what they tell us is in fact what is happening to them, and that has a cause.
So it's up to us to find out what that was."
Neatly demonstrating in yet another way how they compare favourably to the PACE investigators.
 
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Thank you so much @Bob I really apprecieate this. i used to buy the DVD every year but for the last 2years the DVD's are only available in a format that is not compatible with the american computers so I haven't bought them.
hi kati, i emailed Iime about this and got the following so you SHOULD be able to watch:
One does not need a different disc format for US computers or modern flat screen TVs.

Our DVD producer replied to a similar question as below:

Regional coding can affect play playback on PC's but not the disc format PAL or NTSC.

All your (IiME) DVD's are created region '0' which means no regional restrictions.

https://en.wikipedia.org/wiki/DVD_region_code#PAL.2FSECAM_vs._NTSC

However the users DVD software may not be correctly configured.

There is a very simple solution.

I highly recommend installing and using a piece of software called 'VLC media player' it is 100% free and extremely reputable and regarded as one of the very best media players available not just for DVD but for almost every type of video format.

http://www.videolan.org/vlc/

It is available for MAC and PC free of charge.

PC version:

http://www.videolan.org/vlc/download-windows.en_GB.html

MAC version:

http://www.videolan.org/vlc/download-macosx.en_GB.html
 
hi kati, i emailed Iime about this and got the following so you SHOULD be able to watch:
One does not need a different disc format for US computers or modern flat screen TVs.
Are you absolutely sure about this, shadida? The only reason I ask is because I looked up this issue myself because I thought it might not be a problem for modern computers but I was surprised to find that it can be an issue. But perhaps the info I read was out of date.

Edit: Actually, it looks like your info is spot-on (sorry for doubting you!) with regards to modern equipment. My info was out of date: http://www.theguardian.com/technology/askjack/2007/jul/05/watchinganntscdvdjustpres
 
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Are you absolutely sure about this, shadida? The only reason I ask is because I looked this issue up myself because I thought it might not be a problem for modern computers but I was surprised to find that it can be an issue. But perhaps the info I read was out of date.

Edit: Actually, it looks like your info is spot-on (sorry for doubting you!) with regards to modern equipment: http://www.theguardian.com/technology/askjack/2007/jul/05/watchinganntscdvdjustpres
no problem Bob- i just emailed them (Iime) and i imagine they'd know because they deal with these questions a lot
 
hi kati, i emailed Iime about this and got the following so you SHOULD be able to watch:
One does not need a different disc format for US computers or modern flat screen TVs.

Our DVD producer replied to a similar question as below:

Regional coding can affect play playback on PC's but not the disc format PAL or NTSC.

All your (IiME) DVD's are created region '0' which means no regional restrictions.

https://en.wikipedia.org/wiki/DVD_region_code#PAL.2FSECAM_vs._NTSC

However the users DVD software may not be correctly configured.

There is a very simple solution.

I highly recommend installing and using a piece of software called 'VLC media player' it is 100% free and extremely reputable and regarded as one of the very best media players available not just for DVD but for almost every type of video format.

http://www.videolan.org/vlc/

It is available for MAC and PC free of charge.

PC version:

http://www.videolan.org/vlc/download-windows.en_GB.html

MAC version:

http://www.videolan.org/vlc/download-macosx.en_GB.html
Thx I bookmarked it!
 
but it does appear that they have now identified the distinction they need in order to add significant value to the UK Rituximab study.
From watching the DVD I didn't get the same impression that you got, my impression was there is still a good bit of work to do ...

Do you know if the DVD may have been edited to remove some details of Dr Cambridge speech ?
 
From watching the DVD I didn't get the same impression that you got, my impression was there is still a good bit of work to do ...

Do you know if the DVD may have been edited to remove some details of Dr Cambridge speech ?
As far as I know, none of that talk was embargoed, so what's on the DVD is probably all of it. Jonathan commented on my article draft that I was overstating things a bit on this subject, and suggested alternative wording which is sure to be a more accurate summary of the situation:
"Dr Jo Cambridge reports distinctive differences in maturation markers of B-cell subsets, potentially of use for subgrouping patients in a rituximab trial."
 
As far as I know, none of that talk was embargoed, so what's on the DVD is probably all of it. Jonathan commented on my article draft that I was overstating things a bit on this subject, and suggested alternative wording which is sure to be a more accurate summary of the situation:
"Dr Jo Cambridge reports distinctive differences in maturation markers of B-cell subsets, potentially of use for subgrouping patients in a rituximab trial."
Thanks, that aligns with what i picked up from the DVD.
Just wondering was Olav Mellas speech edited or does the DVD contain the full version ?
 
Thanks, that aligns with what i picked up from the DVD.
Just wondering was Olav Mellas speech edited or does the DVD contain the full version ?
There was nothing embargoed in that presentation, so I expect the DVD version is probably the full version.