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!

Support Phoenix Rising​

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

 

Evidence of EV RNA in tissues of ME patient -- tissue removed from deceased ME patient who had committed suicide.

Thank you for being our eyes and ears on the ground, @Kina. Did Dr. Chia go into detail on the pathology findings in this deceased patient, e.g. was virus found in the patient's brain?

 

Thank you for being our eyes and ears on the ground, @Kina. Did Dr. Chia go into detail on the pathology findings in this deceased patient, e.g. was virus found in the patient's brain?

No, not too many details on the pathology findings.

 

Thank you so much for all your Tweets today @Kina! You're a star!
So glad you could make it to the conference, and enjoyed it so much.
Everyone seems to really enjoy the IiME conferences, and come away glowing, saying how lovely everyone is (patients and researchers). I always hear super-positive feedback from people who've attended.
Did you manage to chat to lots of nice people?
Rest well tonight.
Thanks again.

 

@Kina, I've just got a very brief question, if you're still awake and permitted to answer...

"NIH -- planning a new microbiome/immune profiling study."

Do you know if this means that the NIH have funded a new ME-specific study to be carried out by Dr Hornig's team?

 

Everyone was very pleased with the three days of meetings this year. The Friday tends to be a repeat of material the researchers have discussed on the previous days and I hope it was a good mix for patients and carers in the audience. I thought Olav Mella's final review of the Norwegian rituximab story was particularly impressive. This is science as good as it gets, very creative but an insistence on top quality methodology.

The atmosphere in the workshop was really outstanding because there is now a group of researchers who know each other well enough to openly exchange and develop collaborative ideas. There were some exciting new features, some of which we will be able to discuss here, and some of which will need to be under wraps for a bit, but again I think the most important think was the focus on quality methodology. Having two days of workshop gave us space and an extra evening for people to brainstorm together. We had a really encouraging brain imaging session and more new scientists are being drawn in from other disciplines.

 

@Kina, thanks so much for doing all that tweeting! I really don't know how you managed it. I hope you get a good rest now!

@Jonathan Edwards - that sounds hugely encouraging! Looking forward to hearing whatever you can tell us...

 

....... We had a really encouraging brain imaging session and more new scientists are being drawn in from other disciplines.

Brain imaging? do you think the brain imaging features you saw are tied to symptoms or causative factors?

 

@Kina, I've just got a very brief question, if you're still awake and permitted to answer...

"NIH -- planning a new microbiome/immune profiling study."

Do you know if this means that the NIH have funded a new ME-specific study to be carried out by Dr Hornig's team?

Mady Hornig was going through who was funding their research and she said the NIH was funding this -- that is what I took from it. They are getting alot of funding from different sources which can only be positive for us.

 

@Kina, thanks so much for doing all that tweeting! I really don't know how you managed it. I hope you get a good rest now!

@Jonathan Edwards - that sounds hugely encouraging! Looking forward to hearing whatever you can tell us...

Thanks Sasha. I kept getting lost in all the stuff they were talking about. It really does make you cognizant of what you have lost. My brain goes about at about 10 percent of what I uaed to be able to process -- makes me sad. It was a struggle and I am exhausted. Hopefully, i got the main points across.

 

Thank you Kina.

 

Thanks Sasha. I kept getting lost in all the stuff they were talking about. It really does make you cognizant of what you have lost. My brain goes about at about 10 percent of what I uaed to be able to process -- makes me sad. It was a struggle and I am exhausted. Hopefully, i got the main points across.

I thought you did great - you were going great guns there!

 

My goodness, I've just gone stratospheric and reached 10,000 posts!

How the heck I have managed to write such a ridiculously enormous number of posts, and what on earth I can possibly have babbled on about in so many posts, I've no idea! I hope I haven't bored you all senseless over the years! (The funny thing is that I can only remember about 10 posts! I've forgotten the contents of the other 9,990 -- I read my old posts sometimes and it baffles me that I actually wrote what I'm reading!)

Anyway, sorry, completely off-topic, and all about me, but I felt I had to say something about it, and have a moment's commemoration of my achievement.

It wouldn't have been possible without you all. I'd like to thank every single one of you. Thank you.

As you were.

 

My goodness, I've just gone stratospheric and reached 10,000 posts!

How the heck I have managed to write such a ridiculously enormous number of posts, and what on earth I can possibly have babbled on about in so many posts, I've no idea! I hope I haven't bored you all senseless over the years! (The funny thing is that I can only remember about 10 posts! I've forgotten the contents of the other 9,990 -- I read my old posts sometimes and it baffles me that I actually wrote what I'm reading!)

Anyway, sorry, completely off-topic, and all about me, but I felt I had to say something about it, and have a moment's commemoration of my achievement.

It wouldn't have been possible without you all. I'd like to thank every single one of you. Thank you.

As you were.

Congratulations Bob, an my apologies that we aren't yet set up to recognise such milestones; I think a new category of 'hero member' might be appropriate...

x 10k

 

Ahead of my article (which I think will take a few days to prepare, at least), here are some sound-bites, a few key bits of (unembargoed) news, and some take-home points…

Dr. Ian Gibson:
“This is an exciting event every year, but it gets better and better… The commitment and enthusiasm of the people who present…is second to none…We’re on an up, and I think this conference is going to demonstrate that.”

He’s writing a book about the politics of ME, and what delays things in research.

Professor Mady Hornig:
“2015 seems to be the year, in which we’re seeing so much coming together, and so much synergy, across the globe really”

They’re planning a new follow-up microbiome study in association with the Chronic Fatigue Initiative (CFI).

Specifically, noted eotaxin: 33 times the level of controls in the patients they studied.

The embargoed content was the results of the metabolomics study, as Simon guessed. They’re still going through and analysing the results and trying to figure out what it all means. The one snippet she did let go looks to me like another important piece of the puzzle…but I’m not going to break the embargo on that…

Professor Jonas Bergquist:
The embargoed info in this presentation concerns a fairly small study which hasn’t been published yet, but again looks to me like a significant piece of the puzzle.

Dr. Amolak Bansal:
Reviewing case definitions, he commented on SEID that the name is “not very catchy”. The criteria are simple, but perhaps too simple, and there’s not enough guidance for it to be useful for research purposes. He explained the Sutton CFS/ME Scoring System they created for use at his clinic, and why they use it to help distinguish “CFS” from “ME”. In his review of case definitions, he highlighted some symptoms that they feel are quite consistent in ME/CFS patients but not really recognised in the case definitions: hypersensitivity to medications, alcohol intolerance, cold peripheries (hands and feet), and most interesting of all, altered pupil reflexes, which he described in some detail – an observation which has never been written up scientifically, he said, but which they see quite consistently.

Dr. Luis Nacul:
Reviewed the epidemiological evidence on ME/CFS, why the epidemiology is crucial to getting things right, and how bad epidemiology has hampered progress to date. “The pieces of this jigsaw are really coming together…I think we’re getting there…but…we’re not quite there yet”. Described people with ME and their carers as “the real experts”.

Professor Sonya Marshall-Gradisnik + Dr Don Staines:
Presented the results from their recent papers on SNPs in ME/CFS patients. Discussed some of the potential implications of the SNPs they found, and explained why those SNPs look like they fit well with known ME/CFS symptomology. In answer to my question, Marshall-Gradisnik claimed that they had applied statistical corrections to allow for the large number of SNPs they had evaluated, and had employed ‘Australia’s best biostatistician’ to do so.

Dr. Jo Cambridge:
A highly-accessible quick explanation of the B cell lifecycle, followed by a rapid explanation of the latest in their efforts to investigate the subtle ways in which B cells may be functioning differently in ME/CFS patients - and between ME/CFS patients. Unfortunately, the latter was much too rapid for me to get good notes on those all-important details, but it does appear that they have now identified the distinction they need in order to add significant value to the UK Rituximab study.

Although the percentage of B cells in the blood was the same in ME/CFS patients as controls, and they found no differences in classical B cell subsets, they found differences in maturation markers CD24 in CD19, and CD38 in CD21. Presenting a slide of their results, which showed these markers in patients vs controls, Cambridge assured the audience that although the difference between the plots may look small to the untrained eye, it’s actually very significant.

To my understanding their findings are indicating significant differences (in ME/CFS patients) in the proportions of certain types of B cells that are at different stages of maturation. In CD19, at least, there’s a higher proportion of ‘younger’ cells in the ME/CFS patients. The plan now, as I understand it, will be to monitor how those particular markers vary during the course of Rituximab treatment – one might perhaps hope that this abnormal metric might disappear after Rituximab treatment, for some patients at least – and whatever happens, it should provide important clues. Jonathan Edwards can no doubt correct my naïve understanding of all this in due course…


Dr. Neil Harrison:
So far, his work has been mostly concerned with exploring the relationship between inflammation and human behaviour, and how the immune system interacts with the brain. But he now has a little bit of money available to explore this in ME specifically. For now, his presentation focused on a (most interesting) generic description of this field of research…so no ME-specific news here yet.


Dr. John Chia:
Glad to be back at IiME after a 3-year absence. Reviewed his work on enteroviruses – some distance above my head, unfortunately, but I noticed that a few top researchers present were keen to talk with him about his work.

Dr. Claire Hutchinson:
Well off the beaten track, but for me this was in some ways the most fascinating and thought-provoking presentation of the conference. Hutchinson noted that visual symptoms are frequently discussed by patients on forums but there’s practically no literature on the subject. Heightened sensitivity to light, difficulty filtering out extraneous information, problems with eye movement and tracking, difficulties with reading, etc. Such things have been measured successfully in Alzheimer’s, MS, and Parkinson’s….and now Hutchinson has confirmed experimentally these anecdotal observations of patients.

The results she presented indicate some considerable success in relation to her goals to “demonstrate that ME causes a range of vision-related problems” and to “identify key visual symptoms as clinical features of ME”. Peripheral though these symptoms may be to the symptomology of ME/CFS, I was left with the feeling that these clear, objective, easily measurable findings are potentially very useful indeed, politically, and might also offer a clear signpost towards key neurological insights.


Professor Betsy Keller:
Her interactive presentation offered patients some “Activity guidelines to avoid symptom flares”. She got the audience on its feet (never easy at an ME/CFS conference!) to walk through some low-impact postural exercises to help with energy management. A practical and informative session.


Dr. Oystein Fluge, Professor Olav Mella:
As usual, a significant proportion of the audience had left the building (doubtless of necessity) by the time the headline act hit the stage. They talked us through the history of the Rituximab findings, how it came about, and the state of play with the Rituximab study.

Quite a bit of new unembargoed info in this presentation, I think. The study will be unblinded in summer of 2017 (assuming all proceeds according to plan in the next few months). The long delayed Phase II follow-up study on Rituximab should hopefully be published in PloS One in 2-3 weeks – it required 3 years observation time (post-treatment) before publication, that’s why it’s been so much delayed.

Most exciting to me (because I’ve bought into their hypothesis that it’s an antibody to the epithelium that we’re looking for, ultimately) they can already say with confidence that their sub-study on endothelial dysfunction is confirming the findings from the Dundee researchers: they, too, are finding measurable endothelial dysfunction in their patients. It also looks to them like the degree of endothelial dysfunction correlates with the degree of disability – which potentially makes it an important finding, and (I’m speculating here) they might be able to publish on this subject before the main trial completes.

The rigour of their methodology for the Rituximab trial impressed everyone present. They’ve started their approved Phase II study on the much cheaper Cyclophosphamide, with 40 patients diagnosed by CCC with illness duration >2 years. If the response is good and toxicity data is OK, they plan a second phase of this study for 20 severe and very severe patients.

Professor Mella said they’ve been to IiME for 5 years and this conference was “the best so far” – they were especially impressed by the research colloquium. Most ideas come from patients, he said: “It’s a good thing for doctors to listen to patients, because what they tell us is the truth…what they tell us is in fact what is happening to them, so it’s up to us to find a cause…”


Finally, Dr Gibson closed by saying he ‘takes his hat off to all the scientists we’ve heard from’ and spoke of his admiration for them: they “stuck to it when the easiest thing was to walk away”, and when people say “we’ll never find the cause”, their response was “the hell with it, we are”.

I’ll echo that from my personal perspective: every year I’ve been to IiME the science has been more exciting than the last, more coherent and more joined-up than the last. The talk of ‘pieces of a jigsaw puzzle’ makes more and more sense with each piece that falls into place. It’s a slow and painstaking process, we can still expect things to move in timescales measured in years rather than months - but we can confidently expect the science to keep moving forward.

 

My goodness, I've just gone stratospheric and reached 10,000 posts!

big congrats, bob! thank you! you really are a super valuable part of PR, and deeply appreciated

 

My goodness, I've just gone stratospheric and reached 10,000 posts!

How the heck I have managed to write such a ridiculously enormous number of posts, and what on earth I can possibly have babbled on about in so many posts, I've no idea! I hope I haven't bored you all senseless over the years! (The funny thing is that I can only remember about 10 posts! I've forgotten the contents of the other 9,990 -- I read my old posts sometimes and it baffles me that I actually wrote what I'm reading!)

Anyway, sorry, completely off-topic, and all about me, but I felt I had to say something about it, and have a moment's commemoration of my achievement.

It wouldn't have been possible without you all. I'd like to thank every single one of you. Thank you.

As you were.

Welcome, Bob, to the sad side of 10,000!

 

Dr. Amolak Bansal:

Reviewing case definitions, he commented on SEID that the name is “not very catchy”. The criteria are simple, but perhaps too simple, and there’s not enough guidance for it to be useful for research purposes. He explained the Sutton CFS/ME Scoring System they created for use at his clinic, and why they use it to help distinguish “CFS” from “ME”. In his review of case definitions, he highlighted some symptoms that they feel are quite consistent in ME/CFS patients but not really recognised in the case definitions: hypersensitivity to medications, alcohol intolerance, cold peripheries (hands and feet), and most interesting of all, altered pupil reflexes, which he described in some detail – an observation which has never been written up scientifically, he said, but which they see quite consistently.

This is all very unusual, and very refreshing, to see in a UK NHS practice. Including separating CFS from ME, diagnostically. I've absolutely never seen that being done in the UK before! Perhaps there's hope for us in the UK yet! I'm liking Dr Bansal, more and more, the more I read about him.

 

It's just the two of you....

I hope I haven't bored you all senseless over the years!

Not at all, and the posts from both of you are on most members' favorite menu.

Sushi

 

Welcome, Bob, to the sad side of 10,000!

Sad, as in we have no other life? Oh well, we can commiserate happily with each other here!

 

Would just like to add that Prof Mella was so impressive. Such attention to correct procedure and to making sure that whatever they find from their research, the methodology will stand up to all scrutiny. I felt that I can have complete confidence in them, and was hugely excited by this talk....