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

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…
I'm finding this all very exciting. Do we know much about eotaxin? Have we discussed it before anywhere? (I can't remember.)
 
This is very refreshing, and unusual, 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!
He may not be happy with that paraphrasing of what he said! But he did say that 'ME has been seen as being characterised by more consistent and more severe PEM, and more severe cognitive impairment' (not an exact quote, but close). And the Sutton Scale is designed to identify this distinction. I know that he does offer CBT at his practice, and he always seems to talk about stress and perpetuating factors, so his approach is rather a mixed one, but I don't think that's necessarily a bad thing. He says a lot of great things and a few things that would raise a few eyebrows, but I'm confident that he totally "gets it". :)
 
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.
:thumbsup: Interesting. And potentially very helpful.
 
Heightened sensitivity to light, difficulty filtering out extraneous information, problems with eye movement and tracking, difficulties with reading, etc.
This fits so well with the problems many of us experience with driving. For me, it requires complete concentration, dark glasses, and a baseball cap tipped to block out sources of glare. Night driving is worse as I find it harder to track movement quickly. And reading signs???

Sushi
 
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....
Indeed, that was super-impressive.

The question I was preparing in my mind was: "You've explained how this study is randomised, placebo-controlled, double-blinded, and externally monitored, and you've gone through a hugely impressive explanation of the details of how it will be conducted. So my question to you is: How the hell are our friends in the CBT/GET industry going to get out of this?".

But we ran out of time...:(

And I'm so sorry we didn't manage to meet up; I ran out of time to message you (so busy, in the run-up to the conference)...maybe next year...:)
 
...so his approach is rather a mixed one, but I don't think that's necessarily a bad thing. He says a lot of great things and a few things that would raise a few eyebrows, but I'm confident that he totally "gets it". :)
Yes, that's been my impression about him as well. A bit mixed, but overall going in a very good direction, I think.
 
I'm finding this all very exciting. Do we know much about eotaxin? Have we discussed it before anywhere? (I can't remember.)
Dunno, but Jonathan mentioned it as something that seems to be coming up fairly consistently.
 
eotaxin: 33 times the level of controls in the patients they studied.

anyone want to to educate us by telling us about eotaxins and the significance of them in disease/health?
 
This fits so well with the problems many of us experience with driving. For me, it requires complete concentration, dark glasses, and a baseball cap tipped to block out sources of glare. Night driving is worse as I find it harder to track movement quickly. And reading signs???

Sushi
When she presented on that, I just thought wow, of course we talk about these things all the time, and so many of us go around in dark glasses all the time, it's such a big thing, yet nobody ever though to research our visual processing? And we haven't exactly been clamoring for that either - I think she's stumbled on a field that is just ripe for further research.

And these tests, some of them are so easy to present...if only I had the time, I'd love to write an app for that...
 
anyone want to to educate us by telling us about eotaxins and the significance of them in disease/health?
Well, there's this...
http://en.wikipedia.org/wiki/Eotaxin

One of the 3 is associated with cannabis use and schizophrenia, one with aspirin-associated respiratory disease, and one is expressed in endothelial cells. Plenty to chew on there. Let's hope it's specifically the 3rd type that's elevated, and it's another clue pointing at the endothelium, rather than a reflection of what many of us find effective as a painkiller...
 
Well, there's this...
http://en.wikipedia.org/wiki/Eotaxin

One of the 3 is associated with cannabis use and schizophrenia, one with aspirin-associated respiratory disease, and one is expressed in endothelial cells. Plenty to chew on there. Let's hope it's specifically the 3rd type that's elevated, and it's another clue pointing at the endothelium, rather than a reflection of what many of us find effective as a painkiller...
mark,

I was hoping for more than a Wikipedia page explanation.....

i hope you sleep well.
 
Well, there's this...
http://en.wikipedia.org/wiki/Eotaxin

One of the 3 is associated with cannabis use and schizophrenia, one with aspirin-associated respiratory disease, and one is expressed in endothelial cells. Plenty to chew on there. Let's hope it's specifically the 3rd type that's elevated, and it's another clue pointing at the endothelium, rather than a reflection of what many of us find effective as a painkiller...
In the CSF study it was CCL11, the first type:

http://forums.phoenixrising.me/inde...in-and-hornig-is-out.36607/page-3#post-580584

It's associated with poorer cognitive performance (in mice, at any rate).
 
It seems inadequate to just say thank you to all who contributed...but thank all of you anyway. I don't know how you were able to muster the stamina to do it. Hopefully the experience was as rewarding as it appears it was. Rest now!
 
http://forums.phoenixrising.me/index.php?threads/cfi-spinal-fluid-study-from-lipkin-and-hornig-is-out.36607/page-3#post-580584
Yuk.

It's associated with poorer cognitive performance (in mice, at any rate).
And also with current cannabis use. Wouldn't surprise me if the association is just due to that - I would imagine it's a fairly popular painkiller for ME/CFS patients in the US, especially in states where it's legalised. Several MS and ME/CFS patients have told me it's the only painkiller that works. Then again, whatever the reason why that seems to work as a painkiller for certain conditions, that might also be the reason for this association in ME/CFS patients.

Anyway, if it is a dead end there's plenty more to be working on...there are just so many promising avenues these days. That's a good indication that you know more now, when you find you have masses more unanswered questions than you did before...
 
In the CSF study it was CCL11, the first type:

http://forums.phoenixrising.me/inde...in-and-hornig-is-out.36607/page-3#post-580584

It's associated with poorer cognitive performance (in mice, at any rate).
scarecrow,

thanks for the lead.

here's a quote from the recent Horning CSF study:


....The presence of an allergic-type diathesis in the CNS of individuals with ME/CFS is further supported by the finding of increased CSF levels of CCL11 (eotaxin, a chemokine involved in the selective recruitment of eosinophils, an allergy-associated white blood cell subset48) in ME/CFS subjects relative to ND control subjects. CSF, as a reflection of the microenvironment of the CNS, may provide unique clues to the pathogenesis of ME/CFS. Although increased CSF CCL11 and CXCL10 levels in ME/CFS subjects, along with dysregulation of IL1 signaling, suggest the possibility of an allergic process in central compartments,49,50 such patterns may also be seen in a wide range of CNS infections........
 
mark,

I was hoping for more than a Wikipedia page explanation.....

i hope you sleep well.
Thanks, I hope to, although this bed is making me itch like crazy. Wiki was best I could do - sorry.