IACFS/ME Conference: Professor Carmen Scheibenbogen – Emerging treatment options for autoimmune ME/CFS 

September 30, 2021

The 2nd Virtual Scientific Conference for the International Association for Chronic Fatigue Syndrome/ Myalgia Encephalomyelitis was held on the 19th – 21st August 2021 (streamed on zoom). The conference promoted unpublished data and included both clinicians and biomedical researchers. 

The talks were grouped into different sections, including the longer 45 minute talks in the Professional Workshops and shorter talks covering topics of infectious diseases, immunology and clinical cases. 

We have chosen a selection of the talks which will hopefully be of interest to you, which are listed below. Here we report on our third talk in this series with a talk from Professor Carmen Scheibenbogen who’s presentation focused on the current evidence for ME/CFS being an autoimmune disease, with her presentation titled “Emerging treatment options for autoimmune ME/CFS”. The further talks we will cover are shown below and these will be available in one report by the end of October 2021.  

Due to the format of the conference and the focus on unpublished data, no direct recordings or pictures are available freely as this may jeopardise publication. The full conference programme can be found on the IACFS/ME website here, where recorded presentations may be purchased. 

3.  Emerging treatment options for autoimmune ME/CFS 

Carmen Scheibenbogen, MD 
Institute for Medical Immunology, Charité University Medicine (Germany) 

Professor Carmen Scheibenbogen is a Professor of Immunology based in Berlin. The key takeaway messages from this talk is that there is evidence for ME/CFS being an autoantibody disease and evidence for the use of autoantibody treatments to target the disease. 

Prof Scheibenbogen started with concise description of the disease (which was covered in more detail in Dr Bested’s talk), however, the key point she stressed is the role of dysfunction of the autonomic nervous system. Dr Scheibenbogen talked about the pathomechanisms involved, which included three key parts: the immune system being disfigured by an infection, ANS dysfunction and impaired energy metabolisms. However, we do not know how all these parts fit together. 

Prof Scheibenbogen then went onto the main part of her talk covering the evidence that currently exists for ME/CFS being an an autoimmune disease (AID) as; it is often triggered by an infection, patients have higher levels of autoimmune genes and the co-morbidity with fibromyalgia.  Further improvements have been seen with autoantibody therapies, such as Rituximab, IgG, endoxan and immunoadsorption. Studies have found high levels of adrenergic and muscarinic cholinergic receptors in patients studied, with evidence for β2 adrenergic dysfunction. Additionally, autoantibodies have been found to correlate with symptom severity, particularly for fatigue. For the symptoms of cognitive function and gastrointestinal symptoms only two receptors were found to correlate with symptom severity (a recently published study; Freitag et al., 2021). 

Lastly Prof Scheibenbogen summarised the  findings from clinical studies targeting autoantibodies. The three different studies of Rituximab and their limitations were discussed, with the latest study providing disappointing results (Fluge et al., 2019). Other treatments showing promising data include; use of intravenous cyclosporine (good results), immunoadsorption (initial and two year follow up has shown improvements in symptoms), treatment with IgG at home (promising data, Scheibenbogen et al. 2021). From these studies potential biomarkers have also been revealed for disease activity, such as LDH. Novel treatment options are looking into novel mAb (monoclonal antibodies) and targeting FC receptors (FcRγ and nFcR) (currently under triall and looking hopeful). 

Lastly, the talk was rounded off with explaining the limitations in studying clinical studies targeting autoantibodies. For example; patient selection (varying degrees of ME/CFS, disease longevity), disease criteria and definition, quantifying and measuring response, with few and underfunded clinical trials limiting results. 

(N.B. there was a change in the running order of the presentations, this talk is the first listed in the programme) 

Katrina Pears, Research Correspondent, ME Association


Professional Workshops

Alison Bested, MD, FRCPC, ABOIM
Chair, Integrative Medicine, Associate Professor
Nova Southeastern University; Weston, FL, USA  

Blair Grubb, MD
University of Toledo; Toledo, OH, USA

Carmen Scheibenbogen, MD  
Institute for Medical Immunology, Charité University Medicine (Germany)  

Larry Afrin, MD
AIM Center for Personalized Medicine; Purchase, NY, USA    


Avindra Nath, MD
US National Institutes of Health, NINDS; Bethesda, MD, USA    

Infectious Disease

Leonard Jason, PhD
DePaul University; Chicago, Illinois, USA  

Provocation Studies 1


Neurology/ Epidemiology

Clinical cases

Hector Bonilla, MD
Stanford University; Stanford, CA, USA  

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