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Low-dose Rapamycin trial in PCS

RAP is mTOR inhibitor at high dose, immunomodulatory effect at low doses. Effects in viral activation, reverses immunosenescence, stabilices inflamatory cytokines.
Dose: single weekly dose of 1mg (2w)+ 2mg (2w)+ 4mg for 2 months
David Putrino
#MECFSConference2025

6 1 2 0

Low-dose Naltrexone (LDN) and Mestinon trial in ME/CFS
Randomized Clinical trial Baby Lift

60 mg (20mg*3 per day) Pyridostigmine and/or mestinon
Target: increase preload after autonomic improvement. Improves exercise tolerance

David Systrom
#MECFSConference2025
#MyalgicEncephalomyelitis

4 0 1 0

Hyperbaric oxygen therapy (HBOT) trial in ME/CFS
Intermittent hiperoxia triggers a hypoxia-like state in the cellular response.
Elevates VEG, improves mito act, decreases ROS, reduces inflamatory cytokine
RCT Improvement after 40 ses, 3-5 per w, 90 min, 2 ATA, 100% O2

Laura Kim
#MECFSConference2025

3 0 0 0

There is positive effect of IVIG infussion in pwME and pwLC in several studies.
Large validation studies missing
Need to understand response/not & biomarkers

Symptons back after stopping treatment
No side effects
#MyalgicEncephalomyelitis
#MECFSConference2025

3 0 0 0

Overview of IgG therapy in ME/CFS and PCS
Today at 11am

Nina Babel
#MECFSConference2025
#MyalgicEncephalomyelitis

3 0 0 0

Immunoadsorption in severely ill ME/CFS patients
HELP apheresis is NOT IAd
Reduces IgG. Used in autoimmune diseases

"a pwME bedriden, yes, but involvement of the brain or the heart is also severe disease"

Georg Schlieper
#MECFSConference2025
#MyalgicEncephalomyelitis

4 0 1 0

Immunoadsorption trial in ME/CFS
The worstening of VSpwME is due to an outpatient treatment. They are very weak peope.

Elisa Stein
#MECFSConference2025
#MyalgicEncephalomyelitis

3 0 0 0

Immunoadsorption trial in ME/CFS
There is an impaired function of B2adrR ab, provide info about the eficacy of therapy.

5 sesions in 10 d
Responders had 2nd cycle in 6-10m

Results: Reduction IgG, IgA, IgM
Not lasting effect. Why?

Elisa Stein
#MECFSConference2025
#MyalgicEncephalomyelitis

3 0 0 0

Rituximab trial in ME/CFS
Financed by a private company
n=30
375 mg/m2/week iv x 4 times
CCC
Follow up of the patien with a smartphone app, handgrip, antiB1 /B2adr and anti M3/M4 R abs

Wakiro Sato
#MECFSConference2025

4 0 0 0

B cell depletion targeting CD19 trial in ME/CFS and PCS

There is a strong rationale for Bcell depletion in post infectious autoimmune #MyalgicEncephalomyelitis
We should target modern Bcell cd19/20 therapy
Those that repost serious infection get IG

Judith Bellmann-Strobl
#MECFSConference2025

3 0 0 0

B cell depletion targeting CD19 trial in ME/CFS &PCS

"I'm convinced that Bcell depletion is a therapy for the subgroup of proven autoimmunity in #MyalgicEncephalomyelitis"
Inebilizumab CD19
Rituxi/Ofatu/ocrelizu/Ublituximab CD20

Judith Bellmann-Strobl
#MECFSResearchFoundation
#MECFSConference2025

3 1 1 0

Plasma cell targeting in ME/CFS

Daratumumab, an aab IgGKappa against mieloma, to be used with big expectations in a clinical trial for #MyalgicEncephalomyelitis lacking private Funding (only from a Norwegian ME assoc.)

Øystein Fluge
#MECFSConference2025
#MEAwarenessMonth

4 0 0 0

What a conference!!
And I missed so much!

Thanks Charité Fatigue Center and Dr Scheibenbogen for this.

See you tomorrow if we can ;)

#MECFSConference2025
#MEAwarenessDay
#MyalgizEncephalomyelitis

4 1 1 0

Infection type does NOT drive transcriptional shifts: it doesn't matter the virus, there is a shift in the genes transcribed after an infection.
Anna Aschenbrenner
#MECFSConference2025
#MEAwarenessDay

3 1 0 0

Transcriptome analysis identifies immune dysregulation in peripheral immune cells of ME/CFS patients.
There are shifts in the monocytes and NK cells, and transcriptomes, between LC and recovered group.

Anna Aschenbrenner
#MECFSConference2025
#MEAwarenessDay

4 1 0 0

Significant Increase of NRP1 (neuropilin) in half ME and LC patients.

Dr Yamamura

#MECFSConference2025
#MyalgicEncephalomyelitis

3 0 0 0

"There is no doubt about brain dissorders in ME"

Dr Yamamura
#MECFSConference2025
#MyalgicEncephalomyelitis
#MEAwarenessDay

3 0 0 0

"There is something in the pwME serum that stresses the mitochondria"

Karl Johan Tronstad
#MECFSConference2025
#MyalgicEncephalomyelitis
#MEAwarenessDay

5 1 0 0

Metabolomics & OMICs

Hypothesis: impaired vascular function (less blood in brain) and metabolic changes and energy stress after exercise, that yields in hypoxia and increased lactate, then to metabolic adaptations to energy stress.

Karl Johan Tronstad
#MECFSConference2025
#MyalgicEncephalomyelitis

3 0 0 0

Hypoperfusion and reduced systemic oxygen extraction induced microvascular alteration due to red blood cells' deformation in #pwME and LC

Christian Puta
#MECFSConference2025
#MEAwarenessDay
#MyalgicEncephalomyelitis

5 0 0 0

Lipofuscin accumulation in squeletal muscle in pwME!! compared to LC and control.

Rob Wust
#MEAwarenessDay
#MyalgicEncephalomyelitis
#MECFSConference2025

7 1 0 0

Decreased cardiac output and Preload failure in #MyalgicEncephalomyelitis meeting IOM criteria.
Low flow state in tilt table with impaired systemic oxygen extraction.
#SmallFiberNeuropathy is related to pwME. Fiber dysfunction is related to dysautonomia in pwME
Dr. Systrom
#MECFSConference2025

4 0 0 0

Microvascular dysfunction in MECFS. POSTER

Overexertion and muscle fatigue due to:
Capillaries are clogged (lumen space is thicker, endothelial activation and dysfunction, base mb thickening) in LC and ME patients which affects to oxygen extraction and diffusion.

#MECFSConference2025
#MyalgicE

5 0 0 0

RAMAN spectroscopic profiling of immune cells. POSTER
JENA univ.

We see an upregulation for the patient's immune cells after the test (response to exercise).

#MECFSConference2025
#MEAwarenessDay
#MyalgicEncephalomyelitis

3 0 0 0

Disease severity and Handgripp in pediatric. Mihatsch. POSTER

"Muscular strengh is severily reduced in ME patients.
Handgrip strength predicts ME CFS in 50-56%"

#MECFSConference2025

4 0 0 0

Gut Bacteria in pwME. POSTER

The compossition of the gut microbiome is altered
afffecting the neuronal system, by tryptophan pathways degradation, with effect in the gut-brain axis.

#MECFSConference2025

4 0 0 0

Brain connectivity analysis. Poster
Significant functional and connectivity differences in Motor and somatosensory aspects.
Possible altered sensory and motor processing
No structural differences found but possible affectation

#MECFSConference2025

4 0 0 0

Pediatric diagnosis of #MyalgicEncephalomyelitis is very late (5y) and we need to change that.

Kristian Sommerfelt, University of Bergen, Norway

#MECFSConference2025

4 0 0 0

"There is a extreme severity of symptoms in Severe and VerySevere ME patients"
"The FUNCAP scale is not good enought to measure VS symptoms"

Kristian Sommerfelt, University of Bergen, Norway

#MyalgicEncephalomyelitis
#MECFSConference2025

6 1 0 0

"The ability of having a shower separates severe and very severe patients"

Kristian Sommerfelt, University of Bergen, Norway

#MyalgicEncephalomyelitis
#MEAwarenessDay
#MECFSConference2025

3 0 0 0