Medical care situation of people with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome in Germany, by Laura Froehlich, Daniel B.R. Hattesohl, Leonard A. Jason, Carmen Scheibenbogen, Uta Behrends, Manuel Thoma in Medicina Vol 57, #7, p 646, June 23, 2021 [doi.org/10.3390/medicina57070646] This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis
Research abstract
Background and Objective:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a severe illness with the hallmark symptom of Post-Exertional Malaise (PEM).
Currently, no biomarkers or established diagnostic tests for ME/CFS exist. In Germany, it is estimated that over 300,000 people are affected by ME/CFS. Research from the United States and the UK shows that patients with ME/CFS are medically underserved, as they face barriers to medical care access and are dissatisfied with medical care.
The first aim of the current research was to investigate whether patients with ME/CFS are medically underserved in Germany in terms of access to and satisfaction with medical care. Second, we aimed at providing a German-language version of the DePaul Symptom Questionnaire Short Form (DSQ-SF) as a tool for ME/CFS diagnostics and research in German-speaking countries.
Materials and Methods:
The current research conducted an online questionnaire study in Germany investigating the medical care situation of patients with ME/CFS. The questionnaire was completed by 499 participants who fulfilled the Canadian Consensus Criteria and reported PEM of 14 h or longer.
Results:
Participants frequently reported geographic and financial reasons for not using the available medical services. Furthermore, they reported low satisfaction with medical care by the physician they most frequently visited due to ME/CFS. The German version of the DSQ-SF showed good reliability, a one-factorial structure and construct validity, demonstrated by correlations with the SF-36 as a measure of functional status.
Conclusions:
Findings provide evidence that patients with ME/CFS in Germany are medically underserved. The German-language translation of the DSQ-SF provides a brief, reliable and valid instrument to assess ME/CFS symptoms to be used for research and clinical practice in German-speaking countries. Pathways to improve the medical care of patients with ME/CFS are discussed.
Multiple studies have shown that peak oxygen consumption is reduced in the majority of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) patients, using the gold standard for measuring exercise intolerance: cardiopulmonary exercise testing (CPET). A 
12 out of 382 retrieved references were included. Seven studies were randomized controlled trials (RCTs) with one including three reports (1 RCT, 2 single-arms); others were single-arm trials. Interventions included mindfulness-based stress reduction, mindfulness-based cognitive therapy, relaxation, Qigong, cognitive-behavioral stress management, acceptance and commitment therapy and isometric yoga.
Exact low-resolution electromagnetic tomography (
significant differences occurred immediately post-test, which were most pronounced after 24 hours, particularly in the low alpha (8-10 Hz) and low beta (13-18 Hz) frequency sub-bands. Together, the present findings offer support for EEG source localization techniques to investigate PEM. If confirmed, this study could provide a useful instrument for functional diagnosis and evaluation of treatment outcomes.
Recently launched is the global professional association for medical practitioners, scientists and researchers with myalgic encephalomyelitis.
Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) can cause chronic and acute disease. Postacute sequelae of SARS-CoV-2 infection (PASC) include injury to the lungs, heart, kidneys, and brain that may produce a variety of symptoms. PASC also includes a post–coronavirus disease 2019 (COVID-19) syndrome (‘long COVID’) with features that can follow other acute infectious diseases and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
I am the volunteer in charge of the newly created WAMES Instagram account. I joined WAMES as a volunteer because I liked the idea of being able to help others that are in my situation, especially young people like me. Running the Instagram account allows me post about things I wish I would have been able to see when I had ME!
After 2 years of suffering with ME, I made a full recovery and 5 years on from my diagnosis, my life is back to normal (if it was ever normal to begin with!) I am on my way to university to study Biomedical Science and I have started swimming again.
This paper aims to demonstrate the additional benefit of ultrasound in the diagnosis of chronic osteolysis and osteonecrosis (bone marrow defects) of the jaw shown in a clinical case report.
The aim of this study was to describe the clinical evolution during 6 months of follow-up of adults recovered from COVID-19. We tried to determine how many met the definition of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). A total of 130 patients (51.0 p/m 14 years, 34.6% female) were enrolled. Symptoms were common, participants reported a median number of 9 (IQR 5-14) symptoms.
