International ME/CFS Conference 2025 Berlin May 12-13

[Jaybee00]

Posted under Germany, but giving it its own thread

https://events.mecfs-research.org/en/events/conference_2025


Agenda

https://events.mecfs-research.org/en/events/conference_2025/agenda


Features everybody’s favorite serious hard-core ME/CFS researcher David P*trino.

12.05.2025 - Monday (Day 1)
Introduction
Chairs

Carmen Scheibenbogen, Charité - University Medicine Berlin, Germany

David Putrino, Icahn School of Medicine at Mount Sinai, New York, USA
10:00
5 min
Welcome

Carmen Scheibenbogen, Charité - University Medicine Berlin, Germany
10:05
20 min
The pandemic: What have we learned about post-acute infection syndromes (PAIS)?

David Putrino, Icahn School of Medicine at Mount Sinai, New York, USA
10:25
20 min
The pandemic and ME/CFS: What have we learned? Where have we made progress?

Carmen Scheibenbogen, Charité - University Medicine Berlin, Germany
Care for ME/CFS
Chairs

Uta Behrends, Technical University of Munich (TUM) Hospital and Munich Schwabing Clinic, Germany

Kristian Sommerfelt, University of Bergen, Norway
10:45
15 min
PEDNET-LC: A pediatric network for healthcare and research on PCS, similar PAIS, Post-VAC, and ME/CFS

Uta Behrends, Technical University of Munich (TUM) Hospital and Munich Schwabing Clinic, Germany
11:00
15 min
The Austrian National Reference Center for Postviral Syndromes

Kathryn Hoffmann, Medical University of Vienna, Austria
11:15
15 min
The Akureyri Clinic: A national ME/CFS clinic

Fridbjörn Sigurdsson, Landspitali - University Hospital, Reykjavik, Iceland
11:30
15 min
CFS_CARE: Charité health care and rehabilitation study for ME/CFS

Claudia Kedor, Charité - University Medicine Berlin, Germany
11:45
15 min
Clinical care for ME/CFS

Michael Stingl, Dr. Michael Stingl Private Practice, Austria
12:00
15 min
Off-label drugs for ME/CFS and PCS in Germany

Bernhard Wörmann, Charité - University Medicine Berlin, Germany
12:15
15 min
The situation of very severely ill ME/CFS patients

Kristian Sommerfelt, University of Bergen, Norway
Posters
Chairs

Martina Seifert, Charité - University Medicine Berlin, Germany

Wolfram Döhner, Charité - University Medicine Berlin, Germany
12:30
30 min
Selected poster presentations (5x5 min)
13:00
75 min
Posters & Exchange & Lunch
Understanding I: Cardiovascular dysregulation and mitochondrial pathology
Chairs

Klaus Wirth, Mitodicure GmbH, Germany

David Systrom, Brigham and Women's Hospital and Harvard Medical School, Boston, USA
14:15
15 min
Circulatory dysfunction in ME/CFS

David Systrom, Brigham and Women's Hospital and Harvard Medical School, Boston, USA
14:30
15 min
Skeletal muscle alterations in PCS and ME/CFS

Rob Wust, Vrije Universiteit (VU) Amsterdam, Netherlands
14:45
15 min
Muscle mitochondria in ME/CFS and PCS

Jürgen Steinacker, University Clinic Ulm, Germany
15:00
15 min
Mechanisms of Post-Exertional Malaise (PEM)

Christian Puta, University of Jena, Germany
15:15
15 min
Metabolomics and cellular energy supply in ME/CFS

Karl Johan Tronstad, University of Bergen, Norway
15:30
45 min
Posters & Coffee
Understanding II: Immune dysregulation and autoimmunity
Chairs

Gabriela Riemekasten, University of Lübeck, Germany

Yehuda Shoenfeld, Tel Aviv University, Israel
16:15
20 min
Transfer of IgG from PCS patients induces symptomology in mice

Jeroen den Dunnen, Amsterdam University Medical Center (UMC), Netherlands
16:35
20 min
GPCR autoantibodies in ME/CFS and brain alterations

Takashi Yamamura, National Center of Neurology and Psychiatry (NCNP), Tokyo, Japan
16:55
15 min
Autoantibodies mimicking EBV sequences in ME/CFS and PCS

Franziska Sotzny, Charité - University Medicine Berlin, Germany
17:10
15 min
Autoantibodies to neuronal antigens in ME/CFS and PCS

Christiana Franke, Charité - University Medicine Berlin, Germany
17:25
15 min
Autoreactive B cells in ME/CFS

Birgit Sawitzki, Charité - University Medicine Berlin, Germany
17:40
15 min
Transcriptome analysis identifies immune dysregulation in peripheral immune cells of ME/CFS patients

Anna Aschenbrenner, German Center for Neurodegenerative Diseases (DZNE), Bonn, Germany

13.05.2025 - Tuesday (Day 2)
Treatment I: Clinical trials targeting autoantibodies
Chairs

Nina Babel, Charité - University Medicine Berlin, Germany

Yehuda Shoenfeld, Tel Aviv University, Israel
9:00
20 min
More than 10 years of experience in autoantibody targeting in ME/CFS

Olav Mella, University of Bergen, Norway
9:20
20 min
Plasma cell targeting in ME/CFS

Øystein Fluge, University of Bergen, Norway
9:40
10 min
B cell depletion targeting CD19 trial in ME/CFS and PCS

Judith Bellmann-Strobl, Charité - University Medicine Berlin, Germany
9:50
10 min
Rituximab trial in ME/CFS

Wakiro Sato, National Center of Neurology and Psychiatry (NCNP), Tokyo, Japan
10:00
10 min
Immunoadsorption trial in ME/CFS

Elisa Stein, Charité - University Medicine Berlin, Germany
10:10
10 min
Immunoadsorption in severely ill ME/CFS

Georg Schlieper, Dialysis Hannover - Center for Kidney, Hypertension and Metabolic Diseases, Germany
10:20
30 min
Coffee Break
Treatment II: Clinical trials
Chairs

Christiana Franke, Charité - University Medicine Berlin, Germany

Jürgen Steinacker, University Clinic Ulm, Germany
11:00
20 min
Overview of IgG therapy in ME/CFS and PCS

Nina Babel, Charité - University Medicine Berlin, Germany
11:20
20 min
Hyperbaric oxygen therapy (HBOT) trial in ME/CFS

Laura Kim, Charité - University Medicine Berlin, Germany
11:40
10 min
Low-dose Naltrexone (LDN) and Mestinon trial in ME/CFS

David Systrom, Brigham and Women's Hospital and Harvard Medical School, Boston, USA
11:50
10 min
Low-dose Rapamycin trial in PCS

David Putrino, Icahn School of Medicine at Mount Sinai, New York, USA
12:00
20 min
Targeting muscle and mitochondrial dysfunction in ME/CFS

Klaus Wirth, Mitodicure GmbH, Germany
12:20
20 min
Targeting viral persistence in PCS

Michael Peluso, University of California San Francisco (UCSF), USA
12:45
Poster award & Lunch & Adjourn

 

[Jaybee00]

Reminder to register for free livestream here https://events.mecfs-research.org/en/events/conference_2025/registration Works better on a laptop than the Iphone.

 

[Jaybee00]

Here is the email I got after registration.


Thank you for registering online for the International ME/CFS Conference 2025 on 12-13 May 2025. We will send your personal login by the end of this week to your registration email.

The conference starts on Monday, 12 May at 10:00 AM CEST and ends at 18:00. The livestream starts approximately 30 minutes prior. On Tuesday 13 May, the conference starts at 09:00 AM CEST and ends at 12:45 PM CEST.

For details on the agenda and speakers, please refer to the event website: https://events.mecfs-research.org/en/events/conference_2025

The conference website will feature an online gallery with a selection of scientific posters shown on location at the conference venue in Berlin.

To access the online livestream, you will receive an access code that is tied to your email. This login must not be shared (only one login per email / access code). If you need additional logins, please register additional users with separate emails for the event (link to registration site).


The online livestream requires no app installation to participate. All you need is a stable internet connection (at least 4 Mbit/s) and an internet-enabled device (smartphone, tablet, laptop, etc.) with an up-to-date browser.

We will work to provide on demand access to all presentations (pending speaker's approval) on our website, as soon as possible after the conference. We will inform you once the on demand section is available.

 

[Jaybee00]

Possible for anyone to record the livestream on Tuesday morning with the Fluge and Mella talks —starting 920 am German time?

Thanks to anyone who can do this!

 

[Trish]

The talks will be put online to view after the conference. I don't think we should share publicly unofficial recordings.

 

[Jaybee00]

https://twitter.com/user/status/1921851780167512292


At the #MECFS Conference 2025, @C_Scheibenbogen highlighted striking findings: immune dysregulation, muscle damage, and autoantibodies in #MECFS. The science is clear—this is a serious biomedical disease that demands urgent attention. #MEAwarenessDay #PEMisnotnegotiable

 

[Jaybee00]

https://twitter.com/user/status/1921879875054453018


Prof. Kristian Sommerfelt (Norway) shared devastating data: 50% of severe #MECFS patients worsened over time. 0% of very severe ME patients improved.

 

[Jaybee00]

https://twitter.com/user/status/1921908556422320585



David Systrom, USA,
on circulatory dysfunction in #MECFSPatients show impaired systemic oxygen extraction & small fiber neuropathy-
confirmed in large cohorts.
Pyridostigmine may improve outcomes by stabilizing autonomic dysfunction.
Clear evidence of measurable pathophysiology.

 

[Jaybee00]

https://twitter.com/user/status/1921912417874841731


Wust


Muscle changes in #MECFS & LongCovid are pathological –
not caused by deconditioning.
Exertion above the #PEM threshold causes measurable damage.
We need more muscle biopsies and targeted research – not outdated assumptions.

 

[Jaybee00]

https://twitter.com/user/status/1921915040652759272



Jürgen Steinacker, Ulm
Muscle biopsies show: Mitochondria are structurally damaged in #MECFS and PCS – cristae destroyed, sarcomeres affected.
EPILOC data: 43%still sick after 17 months. Calling this just “fatigue” misses the mark

 

[rapidboson]

I found the immunological block quite interesting today. Has anybody followed it? @Jonathan Edwards maybe?

 

[Jonathan Edwards]

I found the immunological block quite interesting today. Has anybody followed it? @Jonathan Edwards maybe?

I was attending a DecodeME advisory board today and mulling over the Zhang genetic data
That was interesting too!

 

[rapidboson]

Sounds interesting indeed! Much appreciated!

 

[rapidboson]

Fluge will present "Plasma cell targeting in ME/CFS" in a couple minutes.

 

[Jaybee00]

https://twitter.com/user/status/1922196593207382033


Øystein Fluge,Norway, on plasma cell targeting in #MECFS: Daratumumab (anti-CD38) shows clinical &objective improvement in 60% of patients in a pilot trial. Findings support the role of long-lived plasma cells in disease mechanisms. The question is: Where is pharma?

 

[Jaybee00]

Fluge—patients with low NK cells at baseline ~100 or less were non-responders.

In phase 2 will only include patients with >125 NK cells.

 

[Utsikt]

Fluge—patients with low NK cells at baseline ~100 were non-responders.

In phase 2 will only include patients with >125 NK cells.

Notably, the two severe patients were not responders. But two moderate also didn’t respond, so it’s plausible that it was due to NK levels and not severity.

 

[V.R.T.]

Fluge—patients with low NK cells at baseline ~100 or less were non-responders.

In phase 2 will only include patients with >125 NK cells.

The million dollar question is, do the non responders have a different illness or is the upstream cause the same in both? And how to induce the same effect in the non responders...

 

[V.R.T.]

Notably, the two severe patients were not responders. But two moderate also didn’t respond, so it’s plausible that it was due to NK levels and not severity.

That's a little ominous - I suppose we will just have to wait and see if severe patients respond in phase 2...

 

[V.R.T.]

https://twitter.com/user/status/1922196593207382033


Øystein Fluge,Norway, on plasma cell targeting in #MECFS: Daratumumab (anti-CD38) shows clinical &objective improvement in 60% of patients in a pilot trial. Findings support the role of long-lived plasma cells in disease mechanisms. The question is: Where is pharma?

Do they mention how big the improvement was? The FB group was reporting 10,000 steps in the responders, was that the case?