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.

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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.

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Continue reading the Original Blog Post

 

Some in the thread discussing the CSF study, starting here:
http://forums.phoenixrising.me/inde...in-and-hornig-is-out.36607/page-2#post-580528

There's some additional info on eotaxin higher up in that thread as well, so it might be helpful to start at the beginning of that thread.

Note that there's an anti-eotaxin-1 (anti-CCL11) monoclonal antibody called Bertilimumab that might be interesting for ME/CFS researchers to look at:

http://forums.phoenixrising.me/inde...in-and-hornig-is-out.36607/page-2#post-580527

 

Thank you @Kina and @Mark for your comments from the conference. This is all so encouraging and exciting.

 

@Kina thank you so much. The tweets were coming out so regularly and so clear I was thinking a 'Healthy' would be tired from this. I stayed up through the night to read them Thanks for putting them into a write up @mango
@Mark that snippet was brilliant. I am so looking forward to the reports. I was personally interested in what was going to be in the talks about vision at the conference - this 'stuff' is measureable. It's amazing how they can pinpoint dysfunction through testing in this area. I think it is exciting. I feel a sense of real progress this year and of things beginning to consolidate.

 

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.

Ah, yes. I failed to connect the first time. I may - or may not - have too much eotaxin!

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

It's odd that neither the CSF nor the plasma studies showed levels of 33 times the controls in the long duration patients. Here's the link to the plasma graphs:

http://forums.phoenixrising.me/inde...ut-now-press-release.35880/page-2#post-565042

I wonder what 33x refers to? Hmmm.

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...

 

There's some additional info on eotaxin higher up in that thread as well, so it might be helpful to start at the beginning of that thread.

Sorry! I missed all the info you gave by one post. I'll go back and edit my link.

Thanks

 

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

Yes, but just kidding! Perhaps we are just highly sociable!

 

Is Dr Bansal thinking of writing up this stuff on pupil reflexes, as far as you know?

It would be good if he could be persuaded to do it...

 

Thanks for the terrific and hopeful summary, @Mark! It's so great to get some info quickly.

That's fantastic that the UCL team have identified what might indicate patients who will respond to the treatment. Can't wait for the trial now!

 

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.

That sounds very useful - has she got a demo of that on Youtube? If not, I wonder if she could be persuaded to get a demo filmed.

I think there's a real need for publicly visible videos for patients on strategies for energy management that are based on a real understanding of the organic realities of the disease, and her approach sounds as though it is.

 

Is Dr Bansal thinking of writing up this stuff on pupil reflexes, as far as you know?

It would be good if he could be persuaded to do it...

No idea, but it would be good if somebody would. Along with the visual processing findings, I'd love to see this documented in a decent sized cohort. Maybe the thing to do would be to investigate the correlation of these signals with other objective signs and with various diagnostic criteria, to try to get a handle on subgrouping, but I'm not quite sure how that might work...

 

Thanks for the terrific and hopeful summary, @Mark! It's so great to get some info quickly.

That's fantastic that the UCL team have identified what might indicate patients who will respond to the treatment. Can't wait for the trial now!

Ah - well said Sasha, you're right that the real point of that work is to start getting a handle on a biomarker to identify who's going to respond. That will be important in the future, if it's found that only a proportion of CCC patients benefit from Rituximab; policymakers are going to want some idea of who will respond, and won't want to roll it out if lots of people could be harmed by it.

I'm afraid we do have a wait ahead though. Fluge and Mella themselves won't have much idea how well it's working out until the trial's unblinded in the summer of 2017. After that, the analysis and the wait for publication...and then the political battle for regulatory approval can begin. If further studies are required to get full approval for rolling the treatment out, we may be 5 years or more away from approval for Rituximab. On a brighter note, Fluge joked that the thing that scuppers Rituximab might just be their other ME study, Cyclophosphamide: that drug works on a shorter timescale and, since it's cheaper, studies are easier to set up. So we may conceivably get the Cyclo approval before Rituximab...

 

I think the pupil reflexes thing has been talked about on the net as evidence for adrenal fatigue. I'm not saying it is caused by that of course - no research has been done on it. But that is where I've seen talk about pupil reflexes as a test for adrenal fatigue.

 

That sounds very useful - has she got a demo of that on Youtube? If not, I wonder if she could be persuaded to get a demo filmed.

I think there's a real need for publicly visible videos for patients on strategies for energy management that are based on a real understanding of the organic realities of the disease, and her approach sounds as though it is.

Good idea.

She mentioned Yoga and Tai Chi, and I've seen patients on forums railing against that sort of thing, and the 'gentle stretching' exercises, as if all that is some kind of 'GET lite'. But the importance of identifying what ME/CFS patients can do without inducing PEM is huge, if you think about it, and her practical strategies for establishing and maintaining Core Stability and her practical tips for Energy Management are completely rooted in a deep understanding of PEM. She's so much associated with the best lab work to date demonstrating PEM/PENE, that I would hope that if the patient community can hear all this from anyone, it would be from her. A YouTube 'exercise video' on this would be a fantastic resource. It's going to be tricky for me to describe it all adequately in words...

 

She mentioned Yoga and Tai Chi, and I've seen patients on forums railing against that sort of thing

To be fair, I don't think that the patients are railing against the yoga and Tai Chi. It's against all the stories in the Daily Mail featuring photogenic women who have recovered from M.E., having been ill for a year or so, and who attribute their recovery to yoga.

 

Good idea.

She mentioned Yoga and Tai Chi, and I've seen patients on forums railing against that sort of thing,

I find any general advice to do yoga or similar things deeply, deeply unhelpful because there's a shedload of yoga moves. Just saying 'do some yoga' is not help at all, especially for patients who have OI issues (most of us) - there's a lot of 'arms above heart' stuff that will do us in.

We have so little energy that we need to focus on the key moves that will give us the maximum benefit, and avoid the ones that will hurt us (but would be great for healthy people).

That's why what Prof. Keller did at the conference sounds so helpful.

 

I don't think yoga etc, would necessarily be wise for bed bound folk. Could cause a major flare.

 

I don't think yoga etc, would be helpful for bed bound folk. Could cause a major flare.

Possibly because of the OI issues Sasha mentioned. Stretching would presumably be helpful though.

 

Possibly because of the OI issues Sasha mentioned. Stretching would presumably be helpful though.

I'm thinking more along the lines of small amounts of energy expenditure or stimulation causing flares. We don't all have significant OI issues - that seems to be a subset of us.

 

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

The single most encouraging aspect of the workshop for me was confirmation of the potential of new brain imaging techniques. Angela Vincent had invited David Brooks from the basic imaging research unit at Imperial College (he has moved to Denmark recently). I had also asked for Neil Harrison from Sussex to come - he does MRI and is interested in things like microglial activation on a wide front although he seems to be getting more interested in ME.

David Brooks gave us a basic seminar in new imaging and particularly PET labelling techniques. He was very clear and informative and took us through what has now been found in a wide range of illnesses where there are symptoms but nothing to see on standard brain scans. That includes a lot of conditions like Parkinson's disease, Alzheimer's and Huntingdon's years before anything shows up on standard scans or other tests. Imaging microglial activation even shows up the normal increase in tidying up activity in the brain stem that occurs in everyone as we get older.

But the most encouraging bit was that Brooks knew exactly why he had been invited because he was aware of the Japanese PET study we have discussed over the last year and had thought it interesting. He indicated that there was interest in repeating it in the UK. His main reservation was that the study was small, but that is no criticism. He said that he thought the signal that was reported was very much the sort of signal that is of interest in the context of other disorders studied in more detail. And his explanation of the background brain stem signal that increases with age meant that we could see why the additional cortical signal in the Japanese CFS patients was of interest.

So the bottom line is that the experts on neuroimaging think that we may have ways to image the structural basis of the sort of subtle brain changes that are likely to be present in ME. And they are taking the Japanese findings seriously.

What I like about the PET studies, to get to voner's question, is that they show microstructural changes which cannot be explained just on the basis that the person in the scanner is 'thinking something different at the time'. One of the problems with fMRI is that the signal will change just with doing mental arithmetic. That can be useful at times but it raises issues about subjectivity of findings. The PET scans show subtle changes in the structure of the brain - which I think we could reasonably say are going to be part of the causal process, although that may be complicated.

On the other hand the sort of MRI modalities that Neil Harrison is looking at may also be good for looking at longer term microstructural changes. He was using magnetisation transfer, which can pick up changes in the biochemistry of the brain that are not just a matter of which bit is being used at that time. He is studying the way brains respond to 'sickness triggers' like typhoid vaccine and interferon therapy. There are still puzzling questions about why certain bits of brain seem to respond to these more than others but certain findings are consistent and no doubt the story will become clearer fairly soon.

I have a feeling that we are looking for two sorts of causal element in ME studies. I suspect that what gets the problem going may in at least a proportion of cases be one of a range of different immune problems. So we need to keep looking for signs of different immune disturbances in different people. Then I suspect, next in line in the chain, there is some rather homogeneous problem going on in the brain that explains brain fog and maybe a lot of the autonomic and sickness type symptoms. That might be expected to be in brain stem and limbic areas. It is interesting that data already available suggest some things that are expected and some things maybe not quite as expected - which is good.

An important part of this sort of angle is that people at the workshop did not need to feel they were 'in competition' with anyone else about the causes of ME. Everyone was trying to do their bit of the jigsaw and fit it together with other people's.

 

I'm thinking more along the lines of small amounts of energy expenditure or stimulation causing flares. We don't all have significant OI issues - that seems to be a subset of us.

This is the issue with say 'do some yoga'! Some things are just stretches, some use passive weight to stretch, some involve just lying there, some of it is breathing. There's such a lot of different things that it's useless to recommend it in a blanket way and expect patients to know what to do.

This isn't aimed at Prof. Keller, by the way! I wasn't at the conference and didn't hear how she put her recommendation. But I've seen people say 'do yoga' plenty of times and it's just not a helpful thing to say.