For the third year in a row, Dr. Carmen Scheibenbogen and the Charité Fatigue Center (CFC) at Charité —Universitätsmedizin (a good German tongue twister :)) in Berlin are bringing us an ME/CFS and long-COVID International Conference. The conference, which is being live-streamed from May 12th to 13th, is in English and free, and you can register here. (Videos will be available after the conference).
For the 3rd year in a row, the Charité Fatigue Center is putting on an international conference.
I’ve gone on and on over the remarkable transformation Dr. Scheibenbogen and others have brought to Germany’s ME/CFS space. We’ve gone from having no German ME/CFS research for decades to Germany becoming a hub of ME/CFS research.
Nineteen of the speakers are German. Forget about Germany, for a moment, though — let’s talk about Europe. Nine of the 35 speakers at the ME/CFS International Conference at Charité from May 12th to 13th are from other European countries. Two more are from Japan, one is from Israel, and four are from the U.S. Of the four U.S. speakers, David Putrino at Mount Sinai is co-chairing the conference.
Speakers from Germany, the Netherlands, Austria, and Norway.
After a clinical section (which includes off-purpose drugs used in Germany) comes a cardiovascular section. We’ll see some familiar names (Systrom, Wust) and some less familiar ones including Jürgen Steinacker on muscle mitochondria, Christian Puta on post-exertional malaise and Karl Johan Tronstad on blood metabolites.
All Together Now!
Christian Puta is a nice example of: a) how deeply embedded some German researchers have become in ME/CFS and long COVID; and b) how this field is cohering around some central findings.
Puta’s 2024 tome, co-written by 20 other German researchers, posits that microcirculation and mitochondrial issues are causing problems with oxygen extraction by the cells. The inability of the cells to get enough oxygen during exercise results in exercise intolerance, lactic acid buildup, and immune activation. Note how these different research groups (Germany, Norway, U.S.) are coming to the same conclusions.
Researchers are settling in around a common theme – problems getting oxygen into the cells and being used to produce energy. (Image by Christine Miller – Wikimedia Commons).
“Upon physical activity, affected patients exhibit a reduced systemic oxygen extraction and oxidative phosphorylation capacity. Accumulating evidence suggests that these are mediated by dysfunctions in mitochondrial capacities and microcirculation…”
Tronstadt, a Norwegian researcher who is speaking on metabolism at the conference, came to a similar conclusion in a 2021 metabolic phenotype paper:
“We suggest that elevated energy strain may result from exertion-triggered tissue hypoxia (low oxygen levels) and lead to systemic metabolic adaptation and compensation.”
Check out the latest from David Systrom and company (thanks, Matthias) in the US from a recent conference abstract reporting on a huge comparative study of invasive exercise results in ME/CFS and long COVID.
“ME/CFS and LC share symptomatic, reduced aerobic capacity at peak exercise, which is driven by preload insufficiency and impaired systemic O2 extraction, the latter compatible with peripheral left-to-right shunting and/or limb skeletal muscle dysfunction.”
Something in the Blood…
Antibodies that may be attacking tissues or dysregulating bodily functions are a major focus.
Autoimmune and autoantibody presentations dominate the immune and clinical trials sections. The idea that an autoimmune/autoreactive response to a virus has been driving these diseases gained ground with long COVID.
The latest iteration of the fascinating “something in the blood” (or now the gut!) saga continues as Jeroen den Dunnen will tell us if he’s been able to produce ME/CFS in mice by giving them IgG antibodies from people with ME/CFS.
Christiana Franke will tell us if she found autoantibodies to neuronal antigens in both ME/CFS and long COVID and if they are causing neurological problems in these diseases. Given the frequent EBV reactivation, finding autoantibodies that mimic EBV sequences in ME/CFS and long COVID could be a big deal. Ditto with finding “autoreactive” (but not necessarily autoimmune) B-cells that may be impacting regulatory functions in ME/CFS.
Autoantibodies—antibodies produced by B or T cells that target our tissues – possibly in response to a pathogen—are also all the rage in the first clinical trials section, where efforts to remove bad B-cells and antibodies via blood cleansing (immunoadsorption), B-cell targeting, plus interestingly, a report on a Japanese Rituximab trial fill the agenda.
The second clinical trials section features three attempts to increase energy (Rapamycin, oxaloacetate, hyperbaric oxygen therapy, Mitodicure), targeting the coronavirus in long COVID, the Open Medicine-funded Mestinon/LDN trial.
Klaus Wirth thinks he may know why people with these diseases can get so ill.
Klaus Wirth, who, with Carmen Scheibenbogen and Mathew Lohn, created the longest series of ME/CFS hypotheses papers ever done, will tackle perhaps the knottiest question in all of ME/CFS – why people can get so sick that they are unable to move. He believes he has an answer. (An interview with Dr. Wirth is coming up.)
Once again, the conference, which will be live-streamed from May 12th to 13th, is in English and free. You can register here. (Videos will be available after the conference.)
Thanks, Cort, for the registration link. I’m sure a lot of it will be over my head, but I look forward to hearing as many of the sessions as I can handle.
You are welcome Cort 🙂
As you say, quite a bit of consistency building on the exercise issue, great!
I am now looking forward to researches pinpointing ‘the why’. And ‘the how’ ( to treat)
We are registered at ACSFCEM. Thank you for spreading the word. Dr. Carmen Scheibenbogen and the team at the Charité in Berlin are doing a great job and we look forward to the latest research.
For what it’s Wirth, my money is on the autonomic nervous system causing the exercise issues. As well as the T cell exhaustion
I echo your thoughts Mattias, my 25 daughter did Systrom’s icPET a few years ago and the findings 100% supported their hypothesis and I’m sure is included in their findings! (She also has SFN/dysautonomia/hdEDS). Mestinon & LDN help a lot, but are not a cure, Also, working with another research team, she has complete t-cell exhaustion, and some of the lowest NK cells they had seen. Not a contest you want to win…..AND it showed constant antigen stimulation. We just figured out last year that her underlying cause was a newer (in humans) strain of babesia (odocolie) that was most likely reactivated and caused her to fall ill in her freshman year of college in 2018! However, it has been a beast to get rid of despite 2 rounds of treatment. We suspect that is why she is only showing small improvement in t-cell function than we had hoped (after TPE/TA-1 shots and antimalarials/antibiotics for Babesia). BUT, there are improvements! So we are sort of alternating between strengthening the immune system and treatment for babesia so that maybe(?) we can get her body to put the babesia into remission and then her immune system and t-cells will go back into balance. I suspect many of the research findings re causes can be true at once, it’s not one or the other. She is starting the rapamyacin trial this July after spine surgery in June so hopefully that will help. I hope this isn’t too much to share, but just that my daughter is a living example of so many researchers’ atypical/abnormal findings. I believe they are headed down the right path to this octopus of a disease……and Cort – we would NEVER have found out any of this if it hadn’t been for you and HR. Am ever grateful…..
Thankyou for all the help that you give our community Cort.
You make a huge difference.
Cort will you do a conference summary?
Yes! This is something I would like to since I am sound and motion sensitive and will be unable to listen in on the conference at all.
FYI the hyperlink in the piece for Puta’s “2024 tome” was not working for me, here is another
https://link.springer.com/article/10.1007/s15010-024-02386-8
Thanks for this. It seems that views are really coming together in terms of the cause of PEM. This, Systrom’s major new paper etc.
I often get down about the lack of progress, so it’s wonderful when we see progress like this.
On any given topic there seem to be rashes of papers that come out all around the same time for every topic involved. It’s really encouraging 🙂
Looking at the speakers, I love that Iceland (with a population of around 390.000, i.e half of the city of Frankfurt in Germany) has newly founded a national ME/CFS clinic and is presenting it in the conference! The Akureyri Clinic is named after the town in Northern Iceland where it is located which notoriously experienced an epidemic of ME/CFS 75 years ago, and is also looking to build an ME/CFS case database for research. https://events.mecfs-research.org/en/events/conference_2025/speakers/c4F82NbSRnOx4xYRIY2n8Q
The conference is supported by ME/CFS Research Foundation, a private German ME/CFS research foundation that also came up with nice ideas like the social media Lemon Challenge for ME/CFS.
The link to Puta’s 2024 is not working, maybe you’d like to fix it 🙂
This is a great lineup! I am hoping to watch at least a few of the sessions