From 11-12 May, Charité Fatigue Center held its 2nd International ME/CFS Conference "Understand, Diagnose, Treat" in Berlin. More than 60 national and international researchers presented current research results and treatment concepts in lectures and research poster presentations. ME/CFS Research Foundation has funded and supported the organisation of both events. Together with the Charité Fatigue Center and the speakers, we have already published the lectures and presentations (in English).
Prof. Carmen Scheibenbogen, Director of the Charité Fatigue Center and one of the organisers of both events, welcomed the great response: "The international attention and diverse contributions to ongoing ME/CFS research illustrate the great potential of bio-medical research. We are now in a good starting position in Germany, not least thanks to the research platforms and projects (e.g. 'IMMME', 'NKSG' and 'ME/CFS Registry')* that have been publicly funded by the BMBF and BMG for the first time in the last 2 years. These networks and the emerging research momentum must now be sustainably expanded in order to rapidly realise progress in diagnosis and therapies of this disease, which has been officially recognised for over 60 years but is very neglected. I would like to thank the more than 60 national and international researchers who have impressively presented their groundbreaking work during these two days.
In addition to the original lectures, the German Association for ME/CFS (Deutsche Gesellschaft für ME/CFS) has now produced short summaries of the scientific presentations, which we publish here together with them. These summaries are also aimed at non-medical professionals to provide an insight into ongoing ME/CFS research. We would like to thank the German Association for ME/CFS for their initiative and the good cooperation!
Updates - supplemented summaries of the presentations, after approval by the speakers:
– Dr. Andreas Goebel | University of Liverpool (added 6 June 2023)
- Dr. Wolfgang Ries | DIAKO Hospital Flensburg (added 6 June 2023)
- Dr. Dr. Max Liebl | Charité Universitätsmedizin Berlin (added 8 June 2023)
– Dr. Dr. Bettina Hohberger | Universitätsklinikum Erlangen (9.6.2023 ergänzt)
Session 1: ME/CFS and Post-COVID Syndrome I
Prof. Yehuda Shoenfeld | Tel Aviv University (Israel)
Prof. Shoenfeld gave an overview of autoimmunity and autonomic nervous system imbalance in ME/CFS. He hypothesized that autoimmunity in many autoimmune diseases is associated with symptoms typical of the autonomic nervous system (e.g., fatigue, tachycardia). Autoimmunity arises from a complex interplay of genetic, hormonal and environmental factors. As a result, harmful autoantibodies (antibodies that attack the body's own cells) develop. Prof. Shoenfeld also explained that certain peptides, which are present in both EBV (Epstein-Barr virus) and SARS-CoV-2, play a role in the formation of autoantibodies. In the future, these autoantibodies could potentially be used for the diagnosis of ME/CFS, since there is a relationship between the concentration of autoantibodies in the blood and the severity of ME/CFS symptoms.
Prof. Carmen Scheibenbogen | Charité University Medicine Berlin
Prof. Scheibenbogen explained that half of those affected by the post-COVID syndrome (PCS) met the diagnostic criteria for ME/CFS in an observational study by the Charité Fatigue Center. Scheibenbogen emphasized that current research on COVID-19 may be able to contribute to answering the question of what pathomechanisms underlie ME/CFS. A Charité study compared people with PCS without full ME/CFS and PCS with full ME/CFS and showed that people with full ME/CFS after COVID-19 showed significant differences compared to people with PCS without ME/CFS up to 20 months later. These patients had a tendency towards a chronic course of their condition and showed less improvement in symptoms, as well as more biomarkers indicative for chronic inflammation and a disturbed energy metabolism in the mitochondria. Latest figures from German health insurance companies indicate that the number of people diagnosed with ME/CFS has at least doubled since the pandemic. In some PCS patients, acute inflammatory reaction after infection in combination with persistence of the virus in the body or reactivation of e.g. EBV transitions into a ME/CFS symptoms. This is then characterized by endothelial dysfunction, reduced blood flow in the small blood vessels (hypoperfusion) and increased autoantibodies. In first clinical studies, the therapeutic approach of immunoadsorption (washing out autoantibodies from the blood) led to an improvement in the symptoms in some of the PCS patients with full ME/CFS.
Session 2: Diagnosis I
Uta Behrends | University Clinic/MRI TU Munich, Germany
The second session dealt with the diagnosis of ME/CFS. Prof. Behrends gave an overview of the current status of research on diagnostics. She underlined that it is essential for those affected to receive a diagnosis as soon as possible in order to reduce negative social and financial consequences. The first step in diagnostics involves identifying initial triggers of disease onset such as viral infections and to evaluate current activity levels. Attention must be paid to the core symptoms of post-exertional malaise (PEM), fatigue and sleep disorders. The Munich-Berlin Symptom Questionnaire (MBSQ), which was developed in cooperation with the Charité, contains a diagnostic algorithm based on the latest diagnostic criteria, and should be used for diagnostics. The next step in the diagnosis is a physical examination with additional tests if necessary (e.g. hand strength measurement, stress test). Laboratory tests can be initiated, also to enable further research on biomarkers. Finally, it is important to take account of differential diagnoses and comorbidities that may also need to be treated. After some time, patients should then be reevaluated, since there is chance of an improvement in symptoms, especially in children and adolescents.
Prof. Pawel Zalewski | Nikolaus Kopernikus University in Torún (Polen)
The lecture by Prof. Zalewski dealt with the dysfunction of the autonomic nervous system (ANS) in ME/CFS. The complex symptomatology of ME/CFS is in part due to the fact that the autonomic nervous system is not only divided into the sympathetic and parasympathetic nervous system, but also due to the sympathetic nervous system being divided into various sub-areas. In ME/CFS, there are dysfunctions in both the sympathetic and parasympathetic areas of the ANS. A less active sympathetic nervous system manifests itself in orthostatic intolerance (OI), fatigue, sensitivity to heat, hypotension, and exercise intolerance. Overactivation of the sympathetic noradrenergic system, on the other hand, tends to lead to increased blood pressure, for example. Consequently, there are different manifestations of autonomic dysfunction in ME/CFS, which can be detected with various diagnostic tests (e.g. neurotransmitter testing, immunological testing, blood pressure measurement, standing or tilt table testing, etc.). Determining the severity of the autonomic dysfunction is important for the composition of treatment approaches, since ME/CFS symptoms also differ depending on severity - with a different focus on PEM or fatigue.
Session 3: Diagnosis II
Dr. Max Liebl | Charité University Medicine Berlin
The focus of Dr Liebl's lecture was on the functional diagnosis of breathing and muscular dysfunction in ME/CFS as a basis for designing physical therapies and rehabilitation measures. Diagnostic tests include, for example, measurement of chest circumference during inhalation and exhalation, a manual examination of the diaphragm, and the thoracic and cervical spine, each according to functional criteria. A large proportion of ME/CFS patients show muscular trigger points, also due to lack of exercise. However, ME/CFS patients do not show any abnormalities in other movement tests: Three quarters of those affected are able to bend forward without a compensatory step and do not show any atrophy of the trunk muscles. Depending on the results of the examination, an individual treatment plan can be put together, which can include, for example, manual therapy, breathing therapy and a self-exercise programme with breathing exercises for home. Individual therapy planning is essential here.
Prof. Carsten Finke | Charité
Prof. Finke's lecture on diagnostics dealt with brain fog and neurocognitive diagnostics in PCS and ME/CFS. Brain fog mainly includes cognitive deficits in concentration and attention, as well as reduced speed of information processing and memory problems. In other cognitive domains (working memory, reasoning), PCS and ME/CFS patients show no reduction compared to healthy controls. The neurocognitive impairments in PCS and ME/CFS are also related to fatigue and sleep disturbances. MRIs showed reduced volume in the putamen and thalamus of PCS and ME/CFS patients, i.e. brain structures that are involved in the wiring of sensors. The structural changes in these regions are related to the severity of fatigue. Prof. Finke also presented data from a population-representative study by NAPKON (National Pandemic Cohort Network) with 1000 people with a positive PCR test and 1000 healthy controls. Among the people who had been infected with SARS-CoV-2, fatigue was primarily found in younger people and females, whereas cognitive deficits tended to be found in older people and males. This could be an indication of different processes in the development of the symptoms.
Dr. Christian Veauthier | Charité
Sleep disturbences were the topic of the lecture by Dr. Veauthier. In the case of a sleep diagnosis of ME/CFS patients, taking account of the patient’s medical history is obligatory. There often is a sleep measurement at home, optionally also via a sleep diary or an examination in the sleep laboratory. In a study of 64 ME/CFS patients, only four people did not meet diagnostic criteria for a sleep disorder. Insomnia was the most common, followed by sleep apnea. Sleepwalking or restless leg syndrome were less common. Also, shifted sleep phases should not be overlooked. Sleep disorders should be treated based on the applicable diagnostic criteria. If necessary, a referral to sleep medicine can also be made. Future research should address whether treating sleep disorders improves other ME/CFS symptoms.
Prof. Peter Rowe | Johns Hopkins University (USA)
At the end of the sessions on diagnostics, Prof. Rowe's presentation covered joint hypermobility and Ehlers-Danlos Syndrome (EDS), which can co-occur with ME/CFS. The main symptoms of EDS are collagen disorders, easy exhaustion and pain. In a study of 100 ME/CFS patients, 12 also had EDS, these patients also had greater hypermobility and OI. For example, those with ME/CFS and hypermobility had less perfused brains (hypoperfusion) when standing upright than those with ME/CFS without hypermobility. The mechanisms behind this association are not fully understood, but there is evidence of connective tissue weakness and mast cell activation syndrome. When diagnosing and treating ME/CFS, EDS should be considered, e.g. in order to recommend appropriate physiotherapeutic therapies.
Research Poster Talks
Dr. Martin Kräter | Max Planck Institute, Erlangen, Germany
Martin Kräter provided brief insights into physical phenotyping as an approach to reveal information about patho-physiological processes in PCS. On a single cell level, deformability cytometry reveals differences in the functionality of immune cells in PCS when compared with healthy controls, as well as possibly in ME/CFS, thereby potentially providing an unbiased method to detect pathological conditions.
Dr. Marco Leitzke | Helios Clinic, Leisnig, Germany
The poster presentation by Marco Leitzke provided a novel perspective on the pathology of SARS-CoV-2 and subsequently PCS, by centering around the relevance of the NF-kB pathway. As SARS-CoV-2 has the ability to block neuronal nicotinic acetylcholine receptors (nAChRs), the administering of nicotine may potentially support the upregulation of nAChRs, thereby enhancing previously inhibited neuromodulation and enabling the neutralisation of then released SARS-CoV-2 viral particles by preformed antibodies. Nicotine may then also counter hyperclotting, autoimmunity and mast cell activation syndrome (MCAS) in PCS.
Dr. Karl J. Morten | University of Oxford, UK
In his poster presentation, Karl Morten highlighted how, analysing peripheral blood mononuclear cells via the creation of profiles using machine learning enabled the prediction of ME/CFS, MS and healthy controls with 90% accuracy. The presentation then briefly went into a separate area of interest to raise the question of whether non-mitochondrial aerobic ATP synthesis occurs in complex mammalian membrane systems, something for which latest findings may provide evidence.
Hanna Tabisz | Nicolaus Copernicus University Toruń, Poland
Hanna Tabisz presented findings from a study on the effects of whole-body cryotherapy as a treatment for ME/CFS. Taxonomic analysis based on fecal samples collected from each patient before and after 10 rounds of treatment revealed distinct differences in the composition of the microbiome of ME/CFS patients compared to healthy controls. After treatment with cryotherapy in combination with statistic stretching, those differences were less pronounced.
Charlotte Kröger | University of Bonn, Germany
In her poster presentation, Charlotte Kröger made the case for analyzing blood immune cells of PCS patients in order to advance the understanding of the illness.
(We will publish further information on this lecture here as soon as we have the speaker's approval).
Prof. Rob Wust | Vrije Universiteit Amsterdam, The Netherlands
To test the hypothesis on whether skeletal muscle alterations contribute to PEM in PCS, Wust and colleagues conducted a two-day biopsy test in 25 PCS patients and 24 healthy controls. Contrary to previous findings, no evidence for hypoperfusion was found in PCS patients. Fibre type distribution and hand grip strength revealed alterations in the skeletal muscle system, however. In summary, PEM in PCS is likely influenced by local and systemic metabolic disturbances, exercise-induced myopathy, and microclots inside the skeletal muscle.
Kanchan Dulal | Charité University Medicine, Berlin, Germany
In her poster presentation, Kanchan Dulal presented findings from her study on the pathomechanisms of impaired vascular function in PCS and ME/CFS post COVID-19, with the aim to identify biomarkers for endothelial dysfunction in both conditions. Analyses of endothelial cells treated with serum from patients revealed an increased release of molecules capable of inhibiting NO synthesis, thereby providing indirect evidence for dysregulated vascular function and subsequently possible endothelial dysfunction in PCS and ME/CFS.
Franziska Legler | Charité University Medicine, Berlin, Germany
Franziska Legler presented her findings from a prospective observational cohort study in PCS and ME/CFS post COVID-19. PCS patients with moderate to severe fatigue continued to be significantly impaired in a follow-up of up to 20 months post infection. 106 patients were categorised into two groups, with those fulfilling the CCC diagnostic criteria for ME/CFS being worse off throughout the follow-up period. Correlation analysis revealed reduced hand grip strength at baseline as a viable indicator for continued symptom persistence and severity throughout the follow-up.
Session 4: Understanding ME/CFS I
Dr. Francisco Westermeier | FH Johanneum University of Applied Sciences, Graz (Austria)
The fourth session was opened by a lecture by Dr. Westermeier on endothelial dysfunction in ME/CFS, an imbalance of substances that dilate and constrict blood vessels. Nitric oxide (NO) is a messenger molecule in cardiovascular processes, which leads to the relaxation of the vessels and the heart and the formation of new vessels, while also preventing the formation of blood clots. NO, which promotes blood flow, normally increases after exercise, but in ME/CFS patients its formation in the vessels is reduced. In studies, vascular cells were incubated with blood plasma from ME/CFS patients in vitro, these cells also showed reduced production of NO. The underproduction of NO can be explained by a lack of the amino acid L-arginine. There were also differences in endothelial dysfunction with regard to gender and the severity of ME/CFS symptoms.
Dr. Bettina Hohberger | University Hospital Erlangen
As an ophthalmologist, PD Dr. Dr. Hohberger brought a new perspective to the understanding of ME/CFS by showing parallels to the eye disease glaucoma. In both diseases, autoantibodies are found that are able to disrupt cellular balance (functional autoantibodies) – these were also found in the blood of patients with post-COVID. Neutralisation/elimination of the functional autoantibodies could reduce the symptoms in post-COVID patients in curative trials. One explanatory hypothesis is that the functional autoantibodies attack blood and vascular cells, which leads to disturbed microcirculation.
Prof. Martina Seifert | Charité
Prof. Seifert's presentation highlighted new research on biomarkers for endothelial dysfunction and angiogenesis disorders in PCS and ME/CFS. These biomarkers are sought in serum and blood cells to potentially explain the processes leading to vascular inflammation and endothelial dysfunction. For example, autoantibodies against endothelial cells have been shown to be elevated in patients with PCS that fulfil diagnostic criteria for ME/CFS. This could be related to the hypoperfusion and micro-clots seen in PCS. Different processes may occur in patients with PCS with ME/CFS compared to patients with PCS without ME/CFS. Compensatory new vascular branches were formed in PCS, but this did not occur in PCS patients with ME/CFS. This process could help determine which patients recover from PCS and which have persistent ME/CFS.
Dr. Christian Puta | Friedrich Schiller University Jena
The lecture by Dr. Puta dealt with the understanding PEM by analyzing responses to physical stress. Responses to exercise can take place in aerobic and anaerobic metabolism. However, ME/CFS patients quickly become anaerobic and develop PEM. Rehabilitation therapy for ME/CFS and PCS without considering PEM can negatively impact health outcomes. Rehabilitation plans that take PEM into account can, in turn, have positive effects. An undersupply of oxygen to the muscles during exertion can be explained by a disturbed microcirculation and reduced blood flow to the organs. Deformed red blood cells could play a role in this regard, since they are less able to supply tissues with oxygen. Inadequate regeneration after exercise also plays a role: Patients with PCS with ME/CFS showed an increased resting heart rate already during their acute infection.
Session 5: ME/CFS and PCS II
Prof. Anthony Komaroff | Harvard Medical School (USA)
Prof. Komaroff's presentation addressed the question of whether findings from ME/CFS research can be used to better understand the pathogenesis of PCS. He presented the results from a literature review on the similarities and differences between ME/CFS and PCS, which included 1000 studies. The review article examined whether there are objective biological abnormalities that are found in the diseases. There were overlaps in terms of neurological abnormalities and infectious agents (e.g. reactivation of latent herpes viruses, pro-inflammatory bacteria in the microbiome). Metabolic and circulatory abnormalities were also found in both clinical pictures (except that no post-exercise oxidative stress was found in PCS). The different anomalies are are likely mutually dependent. Further, compared to people who fully recovered from SARS-CoV-2 infection, 60% of patients with PCS still had viral RNA and spike proteins from SARS-CoV-2 detected in their blood, even months after the infection. This could explain a chronic inflammatory response in the body in PCS.
Prof. Leonard Jason | DePaul University (USA)
Prof. Jason addressed ME/CFS after EBV infection and possible implications for PCS. The basic question of the lecture centred around why some people recover from infection and others do not. The approach he presented included longitudinal studies that interviewed people before infection to identify prognostic factors. Before infection, there were already irregularities in the immune response in those individuals who later on did not go on to recover. Prof. Jason also presented analyses of cytokine networks and showed that cytokines in ME/CFS patients had already formed clusters of higher density prior to infection. Other risk factors for developing ME/CFS after EBV infection were pre-existing irritable bowel syndrome and other digestive problems. Prof. Jason also pointed out that established and validated instruments such as the DePaul Symptom Questionnaire (DSQ), which are based on established diagnostic criteria, should be used to record ME/CFS symptoms in self-reports. It is central that questions should not be asked about the mere occurrence of different symptoms, but also about the frequency and severity in order to be able to accurately diagnose ME/CFS.
Session 6: Understanding ME/CFS II
Dr. Anna Aschenbrenner | German Centre for Neurodegenerative Diseases, Bonn
In the second session on understanding ME/CFS, Dr. Aschenbrenner presented research using new technologies such as machine learning and molecular biology methods to study the immune responses in COVID-19.
(We will publish further information on this lecture here as soon as we have the speaker's approval).
Dr. Andreas Goebel | Unversity of Liverpool (Großbritannien)
Dr. Goebel spoke about autoantibodies directed against glial cells and presented a study in which the symptoms of fibromyalgia were passively transmitted from humans to mice. After transfer of the autoantibodies, mice developed typical symptoms of fibromyalgia (lower pain tolerance in the feet, sensitivity to cold, reduced grip strength, small fibre neuropathy and less activity during the main activity period).
Prof. Nuno Sepúlveda | Warsaw University of Technology (Polen)
Prof. Sepúlveda's lecture focused on EBV mimicry in ME/CFS and presented various theoretical explanations. One approach assumes that some pathogens are so similar to the body's own cells that an autoimmune reaction occurs. Another approach assumes that endogenous signals that indicate a chronic risk of infection could trigger autoimmunity. Prof. Sepúlveda presented how machine learning can be used to differentiate ME/CFS patients and healthy controls based on their autoantibodies. With a combination of 27 different autoantibodies, in a study the distinction of patients and healthy controls could be determined with 85% certainty.
Dr. Bhupesh Prusty | University of Würzburg
The lecture by Dr. Prusty addressed the relationship between mitochondrial dysfunction, herpesviruses and autoimmunity in ME/CFS and PCS. According to studies, autoantibodies against various herpes viruses were found in both patient groups, which indicates virus reactivation during SARS-CoV-2 infection. Dr. Prusty showed how certain viral proteins can trigger mitochondrial dysfunction. A current approach analysed 120 autoantibodies simultaneously and measured the immune response using immunoglobulins G and M (IgG/IgM). A higher IgM response was associated with increased ME/CFS symptom burden and greater sensitivity to non-self antigens (e.g., house dust mites, cat dander). In addition, there is evidence that the concentration of fibronectin in the blood and cells is increased in ME/CFS patients. This glycoprotein plays a role in blood clotting and tissue regeneration and acts as cell glue. Dr. Prusty suggested that the interplay of fibronectin and autoantibodies could explain a vicious cycle within cells involving mitochondrial fragmentation, endothelial dysfunction and microclotting in ME/CFS.
Session 7: Treatment I
Prof. Dr. Luis Nacul | University of British Columbia (Canada)
Prof. Nacul gave an overview of the current state of ME/CFS treatment. Central guidelines for patient care and treatment are the current NICE guidelines. Prof. Nacul also mentioned the expert recommendations from EUROMENE, which set the goal of treating the most serious symptoms while at the same time empowering those affected. Therapy offerings for ME/CFS primarily revolve around Pacing in combination with multidisciplinary support approaches. Prof. Nacul presented a current study from Finland, in which the low-dose administration of naltrexone (opioid antagonist) led to an improvement in the symptoms in 74% of those affected by ME/CFS. In low doses, naltrexone has an anti-inflammatory effect, regulates the immune response and can reduce pain, sleep disorders and fatigue. There is further evidence of low-dose administration of aripiprazole (atypical neuroleptic) leading to a reduction in fatigue, brain fog, and non-restorative sleep. Prof. Nacul also presented an evaluation study with 700 ME/CFS patients from his clinic in Vancouver. Based on the NICE guidelines, a model with individualized treatment in combination with group offers on Pacing and mindfulness was implemented. The treatment was able to reduce fatigue in patients and improve their physical and mental health. Timely diagnosis is also central for the long-term prognosis of ME/CFS. In the case of off-label administration of medication, the opportunities and risks must be carefully weighed up, and those treating the patient should make decisions together with those affected.
Prof. Dr. Johannes-Peter Haas | German Centre for Child and Adolescent Rheumatology, Garmisch-Patenkirchen
Prof. Haas presented a current multidisciplinary inpatient treatment concept for children and adolescents with ME/CFS. The program was launched in 2019, and since 2020, 6 young patients with ME/CFS or PCS (up to 25 years of age) are being treated at any time. The first central step of the program is a comprehensive diagnosis in order to select suitable patients for the five-week inpatient stay. Individual and group therapies include e.g. the transfer of knowledge about Pacing, sleep hygiene, dealing with pain and an individualized analysis of energy consumption and gain. Therapy goals are to build resilience and self-efficacy and to learn everyday Pacing. The primary goal of the stay is that the patients and their families are not overburdened. At the end of the stay, those affected showed an average improvement, 4 months later, however, a re-deterioration in some cases ccured. Prof. Haas emphasized that it is not usually possible to cure ME/CFS with a five-week hospital stay, but that improvement in symptoms is possible.
Dr. Michael Stingl | Neurologist in private practice, Vienna
The lecture by Dr. Stingl summarized his clinical experience in the drug treatment of ME/CFS patients. To date, there have been no comprehensive clinical studies and little scientific evidence on off-label medication in ME/CFS. Therefore, when administering drugs, it is always necessary to weigh up what effect can be achieved and how well the medication is tolerated. If it is unclear whether a drug improves symptoms, it should be discontinued or the dose reduced. Dr. Stingl presented different groups of drugs that can be used as off-label medication in ME/CFS. Low-dose benzodiazepines may help PEM, sensory overload, and mast cell activation in the short term, but the risk of addiction is high with long-term use. Anticonvulsants (medication for epilepsy) can be used to reduce nerve pain and possibly neuroinflammation. Antidepressants can treat ME/CFS-related depression and may also have anti-inflammatory effects. Naltrexone (opioid antagonist) may also have an anti-inflammatory effect and improve cognitive symptoms. Pyridostigmine inhibits acetylcholinesterase and may reduce postural tachycardia syndrome (POTS) and increase exercise capacity. In general, these drugs should be used in very low doses and with caution in ME/CFS.
Dr. Laura Froehlich | FernUniversität in Hagen
Dr. Froehlich presented data on the care situation and stigmatization of ME/CFS patients in Germany. A survey revealed that people with ME/CFS living in Germany are medically underserved, because the majority stated hurdles in the use of treatment (e.g. geographical hurdles such as long distances to specialists and financial barriers due to the lack of cost coverage by health insurance companies). Three-quarters of those surveyed were not receiving specialist treatment for ME/CFS, and were dissatisfied with primary care. Furthermore, stigmatisation of patients was associated with lower physical functioning and lower satisfaction with patients’ social relationships. Since the lack of knowledge of medical professionals about ME/CFS can lead to undertreatment and psychologization of the symptoms, Dr. Froehlich lastly presented an evaluation of an educational online lecture on ME/CFS and PCS. A live webinar was able to improve the participating physicians' knowledge of the epidemiology, diagnosis and treatment of ME/CFS.
Bettina Grande | psychotherapist in private practice, Heidelberg
Bettina Grande's presentation highlighted the role of psychotherapeutic support for adults, children and adolescents with ME/CFS. Activation therapy is harmful, but psychotherapeutic support can improve the well-being of ME/CFS sufferers when activation and stimulation are avoided. Psychotherapeutic support can increase the understanding of PEM and Pacing and support the acceptance of individual stress limits and the handling of frustration caused by the illness. Bettina Grande reported on the conditions under which psychotherapy for ME/CFS can be helpful (e.g. regarding a tolerable length and frequency of video sessions). The core elements of her psychotherapeutic approach are to accompany those affected in learning Pacing and in structuring everyday life in order to avoid PEM. Dealing with loneliness and frustration caused by the disease can also be discussed. Finally, Bettina Grande pointed out that overly ambitious psychotherapy can lead to a deterioration in the patient's condition and that the primary goal should be to avoid crashes and overexertion.
Session 8: Treatment II
Prof. Dr. Øystein Fluge | Haukeland University Hospital, Bergen (Norwegen)
Prof. Fluge presented current approaches to combating autoimmunity in ME/CFS. The basic hypothesis is that there is a permanently impaired immune response in ME/CFS. First, he summarized previous clinical studies on the reduction of B cells via Rituximab and Cyclophosphamide. These studies did not initially produce the hoped-for results. New follow-up data are now available after 6 years. The patients treated with Rituximab showed no improvement compared to a placebo control group, just like after 18 months, even after 6 years. The patients treated with Cyclophosphamide showed a slight improvement after 6 years, but there were different progressions. Prof. Fluge's team is continuing to work on using immunosuppressants to break through the pathomechanism in ME/CFS, which leads to endothelial dysfunction and reduced blood flow to the tissue under stress. A new pilot study is investigating the effects of Daratumumab, another drug originally used in chemotherapy, like Rituximab and Cyclophosphamide. It is now being investigated whether Daratumumab can normalize the immune response in ME/CFS.
(We will publish further information on this lecture here as soon as we have the speaker's approval).
Dr. Wolfgang Ries | DIAKO Hospital Flensburg
Dr. Ries gave an overview on immunoadsorption (filtering out autoantibodies from the blood) as a treatment for severe ME/CFS. Hospitalisation and attempts at therapy can cause harm by triggering PEM. This must be avoided at all costs, especially for the most severely affected. Dr. Ries presented how immunoadsorption can be carried out in people severely affected by ME/CFS without inducing PEM. In order to achieve this, it is important to show particular consideration for the patients by taking measures to shield the patient. Single room, reduction of noise, consideration for the patient's sensitivities. The treatment usually consists of 5 sessions (3-4 hours each) over 7 days and can effectively reduce immunoglobulins. A case study showed an improvement in the weeks after treatment in 22 out of 31 patients, with no deterioration observed in any of the individuals.
Dr. Elisa Stein | Charité
An observational study on immunoadsorption in PCS and ME/CFS was the subject of Dr. Stein. In 10 patients* with ME/CFS after COVID-19, a reduction in autoantibodies in the blood was seen after repeated immunoadsorption and was associated with an improvement in physical functioning and a reduction in muscle pain and headaches. Less improvement was seen in fatigue and cognitive functioning. After a few months, however, patients’ overall condition worsened again to reach pre-treatment levels.
Dr. Andrea Maier | University Hospital Aachen
The treatment of orthostatic intolerance (OI) and postural tachycardia syndrome (POTS) was the subject of Dr. Maier’s presentation. A detailed orthostatic medical history must be collected for diagnosis, combined with a standing test (active, passive or on a tilt table). In POTS, it is also important to rule out other disorders (e.g., low blood pressure, other autonomic nervous system disorders). To treat POTS, triggers must first be identified (alcohol, frequent lying down, large meals). Treatment approaches include drinking 2-3 litres of fluids per day, eating enough salt, and wearing compression stockings or an abdominal belt. For POTS without ME/CFS, further therapy recommendations include training the calf and abdominal muscles, as well as standing and endurance training. However, these recommendations are difficult or impossible for ME/CFS patients to implement. If symptomatic therapy does not help, medication can be used in very low doses.
Prof. Dr. Klaus Wirth | KOSA Pharma GmbH and University of Frankfurt
In the last lecture of the conference, Prof. Wirth addressed the disturbed vascular function in ME/CFS. According to his hypothesis, expansion and contraction of the blood vessels are out of balance. Energy deficit in the skeletal muscles and in the brain is triggered by a combination of hypoperfusion and mitochondrial dysfunction. Prof. Wirth presented the hypothesis that the metabolism-related release of vascular mediators is transferred from the muscle to the blood. The resulting cycle could be disrupted by vasoactive drugs. For example, vasodilating drugs in low doses could be suitable for this, so that the supply of oxygen to the muscles and the brain is improved. However, there are currently no drugs that selectively dilate the vessels in the muscles and brain. Yet simultaneous dilatation of the vessels in the abdominal cavity should be avoided. While some drugs can increase blood flow to the brain, this cannot yet be done specifically for the muscles. For patients with OI, nicotine patches and acetylcholine esterase inhibition may help. The choice of drugs depends on the nature of the circulatory problems: OI and POTS or orthostatic hypotension.
Note: Texts for presentation summaries provided by the German Society for ME/CFS (Thank you!). Texts on research poster presentations and all translations in English by ME/CFS Research Foundation.
* Explanation of the research projects mentioned above:
IMMME = Immune Mechanisms of ME: a basic research network on ME/CFS in Germany.
More: https://cfc.charite.de/forschung/immme/
NKSG = National Clinical Study Group: an association of clinical researchers from several universities for ME/CFS,
More: https://cfc.charite.de/klinische_studien/nksg/
MECFS-Register/Biobank: https://cfc.charite.de/klinische_studien/mecfs_registerbiobank/
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