• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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:
I feel so much relief that research is looking so much better for us. Can't thank these researchers enough for their determination and focus. It is all very encouraging. Thanks to all who reported from the conference, it was great. I think we all would have loved to have been there and to have heard the embargoed things - will have to have patience.
 
This isn't going to help anyone with the science but I'm posting it because of my acknowledgment to PR for the tweets from the conference. The rest is mostly my personal observations from the day plus some links which aren't new but might be of use to some http://valerieeliotsmith.com/2015/06/04/science-versus-history-a-snapshot-of-invest-in-mes-10th-annual-conference/
 
Just received an email update:

IiME said:
Dear Friends,

Invest in ME are pleased to announce that the IIMEC10 conference DVD is
now having its final proof-checking performed.
This means that the production version will be encoded and produced this
next week.

Following this we will begin delivery.
We hope you enjoy the DVD as a great deal of effort and resource has
gone into its production.
We thank you for your continued support,

Best wishes
Invest in ME
 
IiME on FB said:
Conference DVD for IIMEC10 is now completed (some last minute embargoed information had to be verified by a presenter) and is in the process of being produced ready for distribution as soon as they are ready and packed.

Really looking forward to getting my DVD!
 
Really looking forward to getting my DVD!
So am I. I was just reading over Mark's excellent notes again about the conference. The only bummer with these DVDs will be the embargoed information that will be missing. Kind of like watching a movie and they cut the best parts out!
Excerpt:

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.
 
So am I. I was just reading over Mark's excellent notes again about the conference. The only bummer with these DVDs will be the embargoed information that will be missing. Kind of like watching a movie and they cut the best parts out!
Excerpt:

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

Thanks for the update.

That's interesting to know as this paper from the WPI showed increased Eotaxin levels in CFS patients with inflammation, including glial activation markers.

The majority of up-regulated factors were members of the CXC or CC chemokine family. The greatest statistical difference was seen in chemotactic factor IL-8, a major mediator of the inflammatory response, with a mean value of 1045±245 pg/mL in patients compared to a mean of only 13.1±1.6 pg/mL as seen for the healthy controls. The other up-regulated chemokines, also from the CXC or CC family, were MIP-1β, MIP-1α, IP-10, eotaxin, MCP-1 and RANTES; two members of the cytokine family, IL-2 and TNF-α, were also up-regulated.

Full PDF Link:
http://iv.iiarjournals.org/content/25/3/307.full.pdf html

It would nice to have a test for Eotaxin, and to see if forum members can replicate this approx 33 times increase, you mentioned. I wonder if there is a test commercially?
 
I just did a brief search online and do not see a commercially available test. I'm sure will see one available if more patients exhibit these levels. I wonder if this is elevated in other disease groups?

I think the Eotaxin findings were in Spinal fluid, so this would not likely be available commercially.