Outcomes and mortality in a newly implemented ECMO center in Northeast Brazil during pandemic

Objectives: To evaluate the outcomes and risk factors associated with mortality of patients cannulated on ECMO in the context of covid infection during the pandemics in a newly implemented ECMO center Methods: This was a unicentric observational retrospective study performed at Real Hospital Portugues, in Recife, state of Pernambuco, Brazil. All consecutive patients with laboratory confirmed SARS-CoV-2 infection cannulated for VV-ECMO or VA-ECMO for severe ARDS from march 2020 to december 2021 were included retrospectively. Patients recieving ECMO for isolated refratory cardiogenic shock were excluded. Descriptive statistics and association tests were used to analyze characteristics, management and patient outcomes during that period. Result(s): In our cohort of 47 ECMO for covid associated ARDS (CARDS), 39 patients (83%) were admitted by our emergency department. 8 patients (17%) had been transferred from other hospitals as soons as they had been cannulated. 32 patients (68%) were male, median age was 50 years (18-69). Mean body mass index was 31 (21,4-46,3). 37 patients (78%) had at least 1 comorbidity. Major bleeding occurred in 34 (72%) patients. Venous thromboembolism and hemolysis ocurred in 19 (40%) and 13 (23%) patients, respectively. When we compared treatments before ECMO initiation (imunoglobulin, tocilizuman, nitric oxide, neuromuscular blockade and proning), proning was associated with better survival (RR 0,67 IC 0,46-0,97 p 0,029). The mean duration in mechanical ventilation until ECMO cannulation was 9,69 days and mean time in ECMO was 23 days. The 90- day mortality was approximately 72%. Conclusion(s): The only variable associated with a better chance of survival was proning before ECMO. Our mortality (72%) is higher than reported from a recent meta-analysis of 1986 ECMO patients implanted during the first pandemic year(37,1%). However it is similar to a German populational registry of covid patients receiving VV-ECMO (73%). Althought it;s impossible to make causal inferences with such a design and sample sizes, we believe that describing the experience of smaller and newly implemented ECMO centers serves as motivation to improve quality and also to plan for future episodes of pressure on health system.

Comparison of Immediate Adverse Effects of COVID-19 Vaccine (COVAXIN BBV152) in Pregnant vs Nonpregnant Women

Aims and objectives: The aim of this study was to compare the immediate adverse effects of the coronavirus disease 2019 (COVID-19) vaccine (COVAXIN) in a pregnant woman with that of a nonpregnant woman. Material(s) and Method(s): It is a prospective observational study done at Vanivilas Hospital, Bangalore Medical College & Research Institute (BMCRI) for 2 months. The sample size was 100 pregnant and 100 nonpregnant women. Telephonically, patients were followed-up, and details of the side/adverse effects were collected in a proforma after 2 and 14 days. Data collected from both groups were analyzed using the Chi-square test or Fisher's exact test. Result(s): The majority of women were in the age group of <=25 years (64.0% and 36.0%, respectively) with a mean age of 25.01 +/- 3.71 years among the pregnant and 28.52 +/- 6.00 years among nonpregnant women. About 25.0% of pregnant women and 38.0% of nonpregnant women reported side effects. About 15.0% and 22.0% had taken treatment for side effects among pregnant women and nonpregnant women, respectively. Among the pregnant women, the common side effects reported were injection site pain (17) followed by fever (5), fatigue (4), and myalgia (03). Whereas among the nonpregnant women, the common side effects reported were injection site pain (28) followed by fever (6), myalgia (3), headache (2), and fatigue (1). Conclusion(s): Side effects reported following the administration of Covaxin in pregnant and nonpregnant women are fever, fatigue, injection site pain, myalgia, and headache. The proportion of side effects was not significantly different in the pregnant and nonpregnant women following Covaxin administration. Clinical significance: Covaxin is an inactivated killed vaccine against COVID-19 by Bharat Biotech. The vaccine has been recommended for pregnant women by the Government of India during corona pandemic. Studies are lacking regarding the difference in adverse events in pregnant versus nonpregnant women, after vaccine administration.Copyright © The Author(s).

Design of upper limb rehabilitation evaluation system based on deep learning

The topic of non-contact diagnosis became a hot topic during COVID-19 and online consultation gained popularity. In this research, a deep learning-based autonomous limb evaluation system is developed for online consultation and remote rehabilitation training for people with physical limitations. Its main goal is to collect and analyze information about limb states. The patient can evaluate the limb state at home using the mobile app, and the doctor can view the data and connect with the patient via the web's chat module to offer diagnostic opinions. Deep learning is used for the Start/End Attitude Determination Model and OpenCV for the limb and hand evaluation model, with the results being uploaded to the server. © The Authors. Published under a Creative Commons Attribution CC-BY 3.0 License.

Neuromuscular Disorders Associated With COVID-19.

The coronavirus disease 2019 (COVID-19) pandemic has had an enormous impact on practically every aspect of daily life, and those with neuromuscular disorders have certainly not been spared. The effects of COVID-19 infection are far-reaching, going well beyond respiratory symptoms alone. From simple myalgias to debilitating critical illness neuromyopathies, we continue to learn and catalog the diverse pathologies presented by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) as it relates to the neuromuscular system. Complications have been documented both as a direct result of primary infection but also in those with pre-existing neuromuscular disorders from myasthenia gravis to devastating critical illness neuromyopathies. In this review, we will discuss the relationship between COVID-19 infection and critical illness neuromyopathy, peripheral nerve palsies, myalgias, positional compressive neuropathy, myasthenia gravis, and Guillain-Barré syndrome.

Design and rationale of the CHILL phase II trial of hypothermia and neuromuscular blockade for acute respiratory distress syndrome.

The Cooling to Help Injured Lungs (CHILL) trial is an open label, two group, parallel design multicenter, randomized phase IIB clinical trial assessing the efficacy and safety of targeted temperature management with combined external cooling and neuromuscular blockade to block shivering in patients with early moderate-severe acute respiratory distress syndrome (ARDS). This report provides the background and rationale for the clinical trial and outlines the methods using the Consolidated Standards of Reporting Trials guidelines. Key design challenges include: [1] protocolizing important co-interventions; [2] incorporation of patients with COVID-19 as the cause of ARDS; [3] inability to blind the investigators; and [4] ability to obtain timely informed consent from patients or legally authorized representatives early in the disease process. Results of the Reevaluation of Systemic Early Neuromuscular Blockade (ROSE) trial informed the decision to mandate sedation and neuromuscular blockade only in the group assigned to therapeutic hypothermia and proceed without this mandate in the control group assigned to a usual temperature management protocol. Previous trials conducted in National Heart, Lung, and Blood Institute ARDS Clinical Trials (ARDSNet) and Prevention and Early Treatment of Acute Lung Injury (PETAL) Networks informed ventilator management, ventilation liberation and fluid management protocols. Since ARDS due to COVID-19 is a common cause of ARDS during pandemic surges and shares many features with ARDS from other causes, patients with ARDS due to COVID-19 are included. Finally, a stepwise approach to obtaining informed consent prior to documenting critical hypoxemia was adopted to facilitate enrollment and reduce the number of candidates excluded because eligibility time window expiration.

Proning in COVID-19 Acute Respiratory Distress Syndrome: Role of Paralytics.

Although proning is beneficial to acute respiratory distress syndrome, impressions vary about its efficacy. Some providers believe that paralysis is required to facilitate proning. We studied impact of paralysis on prone-induced gas exchange improvements and provider attitudes regarding paralytics. DESIGN: Observational. SETTING: University of California San Diego. PATIENTS: Intubated COVID acute respiratory distress syndrome patients. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: 1) Changes in Pao2:Fio2 and Spo2:Fio2 ratios before and after proning with and without paralytics, 2) adverse events during proning with and without paralytics, and 3) nurse and physician attitudes about efficacy/safety of proning with and without paralytics. Gas-exchange improvement with proning was similar with and without paralytics (with no serious adverse events). Survey results showed similar attitudes between nurses and physicians about proning efficacy but differing attitudes about the need for paralytics with proning. CONCLUSIONS: Findings support use of proning and may help in design of randomized trials to assess paralytics in acute respiratory distress syndrome management.

Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19.

BACKGROUND: The management of tracheotomy at home can be very complex, affecting the patient's quality of life. OBJECTIVES: This case series study aimed to explore the experiences of patients affected by neuromuscular diseases (NMD) concerning tracheostomy and Invasive Mechanical Ventilation (IMV) management at home during the COVID-19 health emergency in Italy. METHODS: Semi-structured interviews and the following instruments were used: Connor and Davidson Resilience Scale (CD-RISC-25); Acceptance and Action Questionnaire-II (AAQ-II); State-Trait Anxiety Inventory (STAI); Langer Mindfulness Scale (LMS). Descriptive analyses, correlations, and qualitative analyses were carried out. RESULTS: 22 patients [50% female, mean age = 50.2 (SD = 21.2)] participated in the study. Participants who showed high levels of dispositional mindfulness in terms of novelty-seeking (r = 0.736, p = 0.013) and novelty production (r = 0.644, p = 0.033) were those with higher resilience. The main emotion that emerged was the fear of contagion (19 patients, 86.36%), due to the previous fragile condition, leading to a significant sense of abandonment. The tracheostomy's perception is seen in extremes as a lifesaver or a condemnation. The relationship with the health professionals moves from satisfaction to a feeling of abandonment with a lack of preparation. CONCLUSIONS: The relationship between resilience, flexibility, state anxiety and dispositional mindfulness offers ways to reinforce tracheostomy management at home, even in critical periods when going to the hospital may be difficult.

Non-depolarizing neuromuscular blockade in patients with severe acute respiratory distress syndrome associated with COVID-19: profile of usage and potential deleterious impact on morbidity and mortality

Introduction: Nondepolarizing neuromuscular blockade (NDMB) is a key intervention to avoid ventilation-induced lung injury in acute respiratory distress syndrome (ARDS). In patients with moderatesevere ARDS associated with SARS-CoV-2 infection (CARDS), NDMB were used for prolonged periods of time, with high cumulative doses. We hypothesize that administration of NDMB might contribute to an increased incidence of risk factors later associated with long COVID-19. Method(s): We designed a non-interventional, retrospective study in a large university urban hospital. From January to December 2021, data related to prescription of NDMB, respiratory physiology, mechanical ventilation (IMV) and clinical outcomes were collected from patients' electronic records with a diagnosis of CARDS. Primary outcome was day-90 mortality. Secondary outcomes were ICU length of stay (LOS), ICU-acquired weakness and days of IMV. Mann-Whitney U test was used to compare continuous variables and logistic regression was used to evaluate the association of NDMB use with outcomes, adjusted or not for confounders. Result(s): 116 patients diagnosed with CARDS were included, 87% with severe ARDS and overall mortality was 37.1%. Median age was 57 years (IQ:47-67) and 65.5% were male. P:F ratio at day-1 was 86 (IQ:43). Ventilator-free days (VFDs) at 28 days was 13 (IQ:0-19) in survivors and ICU-LOS was 19 (IQ:10-36). Median time and cumulative dose of NDMB were, respectively, 117 h and 1177.468 mg in patients who survived (n = 70) compared to 197 h and 1898.775 mg in patients who died (n = 41). In addition to days of NDMB exposure (OR 1.05, CI 95% 1.00-1.11), the cumulative dose of cisatracurium, expressed in logs, was correlated with risk of mortality in the ICU, with odds ratio 1.49 (CI 95% 1.08-2.04). Conclusion(s): Patients with severe forms of CARDS received prolonged infusions of NDMB, with high cumulative doses. Both time of exposure and total doses were independently associated with higher risk of mortality.

Hesitancy, reactogenicity and immunogenicity of the mRNA and whole-virus inactivated Covid-19 vaccines in pediatric neuromuscular diseases.

The mRNA-based BNT162b2 and inactivated whole-virus CoronaVac are two widely used COVID-19 vaccines that confer immune protection to healthy individuals. However, hesitancy toward COVID-19 vaccination appeared to be common for patients with neuromuscular diseases (NMDs) due to the paucity of data on the safety and efficacy in this high-risk patient population. Therefore, we examined the underlying factors associated with vaccine hesitancy across time for NMDs and assessed the reactogenicity and immunogenicity of these two vaccines. Patients aged 8-18 years with no cognitive delay were invited to complete surveys in January and April 2022. Patients aged 2-21 years were enrolled for COVID-19 vaccination between June 2021 and April 2022, and they recorded adverse reactions (ARs) for 7 days after vaccination. Peripheral blood was obtained before and within 49 days after vaccination to measure serological antibody responses compared to healthy children and adolescents. Forty-one patients completed vaccine hesitancy surveys for both timepoints, while 22 joined the reactogenicity and immunogenicity arm of the study. Two or more family members vaccinated against COVID-19 was positively associated with intention of vaccination (odds ratio 11.7, 95% CI 1.81-75.1, p = .010). Pain at the injection site, fatigue, and myalgia were the commonest ARs. Most ARs were mild (75.5%, n = 71/94). All 19 patients seroconverted against the wildtype SARS-CoV-2 after two doses of either vaccine, similar to 280 healthy counterparts. There was lower neutralization against the Omicron BA.1 variant. BNT162b2 and CoronaVac were safe and immunogenic for patients with NMDs, even in those on low-dose corticosteroids.

[Antibody production capacity after COVID-19 vaccination in immune-mediated neuromuscular diseases under immunotherapy].

The post-vaccination antibody response in patients with immune-mediated neuromuscular diseases under immuno-suppressive therapy has not been sufficiently verified. The Japanese Society of Neurology has stated that coronavirus disease 2019 (COVID-19) vaccination should be given priority in patients with immunotherapy-associated neuromuscular diseases; however, data on antibody production to a novel mRNA vaccine are scarce in these patients. In this study, we aimed to measure residual antibody titers after the second dose and produced antibodies after the third dose of SARS-CoV-2 mRNA vaccine in 25 patients with neuromuscular diseases under immuno-suppressive therapy (disease group). We compared the disease group antibody titers with those of 829 healthy employees in our hospital (control group). The disease group included 17 patients with myasthenia gravis, 4 with multiple sclerosis, 3 with inflammatory muscle disease, and 1 with chronic inflammatory demyelinating polyneuropathies. Seven cases of the disease group showed negative antibody levels (<15.0 s/co) before the third vaccination, and antibody titers in the positive cases ranged from 16.9 to 4,589.0 s/co. Three of the seven antibody-negative cases turned positive after the third vaccination, and all but one of the antibody-positive cases showed a booster effect, with antibody titers after the third dose ranging from 245.1 to 85,374.0 s/co (1.0 to 885.0 times higher than those before vaccination). Although the immune response in the disease group was modest compared to the control group, in which antibody titers after the third vaccination ranged from 67.8 to 150,000 s/co (0.9 to 5,402.1 times higher than those before vaccination), the result indicated that a constant immune response was achieved under immuno-suppressive therapy. Even in the control group, three participants tested negative for residual antibody before the third inoculation, and four of the antibody-positive participants (27.7-24,054.0 s/co) lacked a booster effect after the third vaccination.

Early immunological responses to the mRNA SARS-CoV-2 vaccine in patients with neuromuscular disorders.

Backgrounds: Intramuscular injection of the SARS-CoV-2 vaccine has raised concerns about its use in patients with neuromuscular disorders (NMDs). We evaluated the response of patients with NMDs to the BNT162b2 vaccine. Methods: Healthy subjects, patients with spinal muscular atrophy (SMA), and patients with Duchenne muscular dystrophy (DMD) were included. All participants received two BNT162b2 doses. SARS-CoV-2 antibody titers at baseline and 2 weeks after each vaccination were compared between groups. Residual muscle volume was evaluated in NMDs group. A questionnaire documented adverse reactions. Results: Eleven patients with NMDs (9 with SMA, 2 with DMD; 7 males; aged 32.7 ± 19.3 years) and 346 healthy subjects (60 males, aged 40.0 ± 12.4 years) were included. Antibody titers (U/mL) were similar between groups (baseline: <0.40 vs. <0.40, first vaccination, 145 ± 258 vs. 103 ± 1192, and second vaccination, 1528 ± 1265 vs. 1429 ± 944; p = 1.000, 0.909, and 0.736, respectively). A negative correlation was found between antibody titers and residual muscle volume but was not significant (Mercuri scale, r = -0.429, p = 0.249; fat infiltration rate, r = -0.194, p = 0.618). The adverse reactions were comparable between groups. Conclusion: The BNT162b2 vaccine is safe and effective in patients with NMDs.

Ultramicronized Palmitoylethanolamide and Luteolin: Drug Candidates in Post-COVID-19 Critical Illness Neuropathy and Positioning-Related Peripheral Nerve Injury of the Upper Extremity

Coronavirus disease 2019 (COVID-19) is the most dramatic pandemic of the new millennium and patients with serious infection can stay in intensive care unit (ICU) for weeks in a clinical scenario of systemic inflammatory response syndrome, likely related to the subsequent development of critical illness polyneuropathy (CIP). It is in fact now accepted that COVID-19 ICU surviving patients can develop CIP;moreover, prone positioning-related stretch may favor the onset of positioning-related peripheral nerve injuries (PNI). Therefore, the urgent need to test drug candidates for the treatment of these debilitating sequelae is emerged even more. For the first time in medical literature, we have successfully treated after informed consent a 71-year-old Italian man suffering from post-COVID-19 CIP burdened with positioning-related PNI of the left upper extremity by means of ultramicronized palmitoylethanolamide 400 mg plus ultramicronized luteolin 40 mg (Gl & igrave;alia), two tablets a day 12 hours apart for 6 months. In the wake of our pilot study, a larger clinical trial to definitively ascertain the advantages of this neuroprotective, neurotrophic, and anti-inflammatory therapy is advocated.

Management of Metastatic CA (Cancer) Pancreas Pain in Post Chemotherapy, Radiotherapy Patient With Combination of Neural Interventions (Oral Neuromodulators, Peripheral Nerve Blocks) and Muscular Intervention USGDN (Ultrasonography Guided Dry Needling): A Case Report

Aims: To describe combined neural and muscular interventions in post covid exacerbations of cancer pain with disabilities.To present a new perspective of neuromyopathy to explain Intractable CA pancreas pain. Introduction: Additional challenges in cancer pain management are due to cancer treatment complications (chemotherapy, radiotherapy). CA Pancreas pains routinely addressed with oral neuromodulators, opioids neurolytic coeliac plexus block (NCPB) or splanchnic nerve radiofrequency ablation (SRF). 75 years male, CA pancreas with spine, pelvic bone metastasis, post chemotherapy radiotherapy. 6 months bedridden with post covid exacerbations in pain (vas 10/10) received prior painkillers. Started oral pregabalin 75mg od, ultracet bd, myospaz bd. Result(s): With 15 days medications vas 6/10, patient could sit on wheelchair. Given sciatico-femoral block, pain reduced vas 2/10 but recurred in 7 day vas 5/10. Started USGDN of tight back and lower limb muscles with 32G solid needles.post3 sessions vas 2/10, able to walk with support after 4 weeks. Discussion(s): Viscerosomatic convergence at the dorsal horn neurons produces visceral pain referred to back and abdominal muscles led to muscle spasm with generation of myofascial trigger points(MTrPs)and pain. USGDN addresses MTrPs. Needle insertion produces local twitch reflex (LTR) followed by muscle relaxation with pain relief. Neural interventions addresses only visceral nociceptive afferents from celiac plexus which forms 10% of total spinal cord afferent input which sensitizes peripheral and central motor nociceptive pathway processing neuromyopathy. Conclusion(s): Viscerosomatic convergence with muscles involvement (neuromyopathy) proved to be effectively managed by using combined approaches, neuromoduation and USGDN in Ca pancreas pain with disabilities.Copyright © 2023

Ventilator-associated events: From surveillance to optimizing management

Mechanical ventilation (MV) is a life-support therapy that may predispose to morbid and lethal complications, with ventilator-associated pneumonia (VAP) being the most prevalent. In 2013, the Center for Disease Control (CDC) defined criteria for ventilator-associated events (VAE). Ten years later, a growing number of studies assessing or validating its clinical applicability and the potential benefits of its inclusion have been published. Surveillance with VAE criteria is retrospective and the focus is often on a subset of patients with higher than lower severity. To date, it is estimated that around 30% of ventilated patients in the intensive care unit (ICU) develop VAE. While surveillance enhances the detection of infectious and non-infectious MV-related complications that are severe enough to impact the patient's outcomes, there are still many gaps in its classification and management. In this review, we provide an update by discussing VAE etiologies, epidemiology, and classification. Preventive strategies on optimizing ventilation, sedative and neuromuscular blockade therapy, and restrictive fluid management are warranted. An ideal VAE bundle is likely to minimize the period of intubation. We believe that it is time to progress from just surveillance to clinical care. Therefore, with this review, we have aimed to provide a roadmap for future research on the subject.Copyright © 2022 The Author(s)

A Smart and Home-based Telerehabilitation Tool for Patients with Neuromuscular Disorder

Over fourteen million people suffer from neuromuscular diseases in the UK such as strokes, spinal cord injuries, and Parkinson's disease etc. That means at least one in six people in the UK are living with one or more neurological conditions. In order for patients to return to normal life sooner, a rigorous rehabilitation process is needed. In hospitals, physiotherapists and neurological experts prescribe specific neurorehabilitation exercises. In most cases, patients need to schedule an appointment to receive treatment in a hospital or to have physiotherapists visit them at home. The number of neuromuscular patients has increased, resulting in longer hospital waiting times. In particular, during COVID-19, patients were not allowed to visit hospitals or have physiotherapists visit them due to government restrictions. Online guides for personalised and custom rehabilitation therapy for joint spasticity and stiffness are also not available. This paper reports the development of an IoT-based prototype system that monitors and records joint movements using sensory footwear (consisting of FSR and IMU sensors) and Kinect sensors. In addition, a prototype web portal is also being developed to record performance data during exercises at home and interact with clinicians remotely. A pilot study has been conducted with six healthy individuals and test results show that there is a strong correlation between Kinect data and FSR data in terms of coordination between joint movements. © 2022 IEEE.

Dutch Myositis Working Group (Dmwg)

Introduction. The poster of the Dutch Myositis Working Group (DMWG) aims to inform people about her goals, activities and ambitions. The group is run by seven patients, representing all types of myositis, supported by Spierziekten Nederland, the umbrella patient organization for neuromuscular disorders in The Netherlands and 4 myositis specialists as medical advisors. Chair: Ingrid de Groot. Contact email: myositis@spierziekten.nl Goals and ambitions of the Dutch myositis working group: * I n collaboration with medical advisors to provide information about IIM (idiopathic inflammatory myopathies) or myositis to newly diagnosed patients and their families: IIM types, symptoms, diagnosis, (new) treatment options, prognosis, inform them about the myositis expertise centres etc. * To connect and support people with all types of IIM: dermatomyositis (DM), polymyositis (PM), Anti Synthetase Syndrome (ASyS), immune mediated necrotizing myopathy (IMNM), juvenile dermatomyositis (JDM), overlap myositis. * To raise awareness of myositis among the public, health care professionals and researchers, pharmaceutical companies? * To collaborate with clinicians, researchers and funds on a national and international level with the aim to improve (clinical) care and research. * To stimulate and participate in the development and conducting of clinical trials. * To collaborate with myositis working groups and patient organisations abroad. * To represent the patient perspective within in the Myositis Network Netherlands and (inter)national myositis study groups. * Patient advocacy. Activities and services: * In person or online meetings aiming to offer moral support and an opportunity to share experiences, concerns etc. or just to socialize. Three times a year we organize separate meetings for people with IBM, for people with other IIM and for caregivers. * Website updates on treatment, guidelines, (inter)national research, activities and actualities (e.g. Covid situation). * Supply patients with brochures for GP/ family doctor, physiotherapist etc. * Online (secured) platform for members. * Annual patient conference with diagnosis specific scientific programs. * Monthly newsletters: these are personalized which means they contain mainly news on the receivers type of IIM (e.g. IBM or ASyS) and information on general topics concerning all people with IIM or neuromuscular disorder. * In person meetings and / or online webinars on general topics e.g. living with a chronic condition, work, pain, fatigue. * Annual meetings with medical advisors: the working group pays a visit to all medical advisors in their respective hospitals. * Representation at (inter)national conferences. * Representation in projects such as guidelines development. * Collaboration in (inter)national studies leading to enrolling Dutch patients, researchers and clinicians in multi-centre studies, (co-) authorships in publications and to presentations during conferences (Treat NMD, IMACS, MNN). * To advise and recommend on research proposals from patient perspective. * To advise decision makers on continuation of expert centres from patient perspective. Collaborations: * Myositis Network Netherlands: patient representation on the board. * OMERACT (Outcome Measures in Rheumatology): Patient Research Partner of the Myositis Working Group. * IMACS (International Myositis Assessment and Clinical Studies Group): steering committee member of Exercise & Rehabilitation Group, led by Helene Alexanderson, ass.prof PhD, RPT). * ENMC (European Neuromuscular Centre): patient representation in myositis workshops. * EULAR (European League against Rheumatism): member of PARE and Patient Research Partner. * GCOM. * ERN - NMD (European Reference Network for Neuromuscular Diseases): member of NMD working group led by em. prof. dr. Marianne de Visser. * Patient organizations for people living with myositis . We are in this together Since myositis is a (very) rare disease, the 'myositis community' is a small one although we're happy to say that it is expanding quite rapidly. Through our inte sive involvement in several national and international studies and research projects we now have close contacts with many myositis experts across the globe, which makes it easier to keep up with actualities and developments concerning research, treatment etc. and to disseminate this knowledge to our members. This helps us to inform, support and advocate for the Dutch people living with myositis and their families and at the same time it offers opportunities to give something back: by sharing with the research community and clinicians our experiential knowledge of the consequences of myositis on everyday life. That way we can contribute to more meaningful research. We can only go forward if we do this together! That is why we are very ambitious in our efforts to contribute to myositis research. Here we list our collaborative efforts: * In 2019 the Myositis Network Netherlands of clinicians and researchers with expertise in IIM was established in which the DMWG is representing the patient perspective by a member on the board. * In OMERACT Myositis Working Group a member of the DMWG is one of the two Patient Research Partners and as such an equal partner of this study aiming to define a set of core patient reported domains with regard to the quality of life and respective instruments for use in IIM. The involvement of the DMWG has led to the opportunity for Dutch patients to participate in Delphi surveys and to an opportunity for Dutch myositis clinics to collaborate in the longitudinal study that emerged from this. * The IMACS network is an important part of our international network. One of our DMWG members is member of the Executive Committee of the Exercise & Rehabilitation Group and as such can facilitate for Dutch patients to become involved in the current study with the ultimate objective to develop recommendations for exercise in all types of IIM. * Members of the DMWG participated in several ENMC workshops on IIM as patient representatives and will continue to do so in the future. * Through a PARE membership in EULAR and membership of the study group of 'collaborative research' the DMWG hopes to raise awareness of myositis within the influential EULAR community and to speak up on behalf of the patients in Europe living with IIM. * One of our members is member of the GCOM committee responsible for the patient program of GCOM and shares the ambitions of this GCOM committee to increase the involvement of patients in this very important IIM conference. * One DMWG member joined the ERN- Neuromuscular Disease group and as such represents the people with IIM living throughout Europe. * DMWG has ambitions to empower people living with IIM and to connect with them, crossing borders by doing so. We have close and amicable relationships with patient organisations in Australia, Czech Republic, Germany, Sweden, UK and USA. * Empowering patients is one of our goals and we accomplished this for instance in Sweden. On invitation by prof. dr. Ingrid Lundberg our chair visited the Karolinska Institute, spent a week with their myositis team and in return was one of the speakers on the annual patient meeting and helped the Swedish patients establish their own myositis working group.

Experience with telemedicine in neuromuscular clinic during COVID-19 pandemic.

Objectives: The aim of the present study was to evaluate the feasibility and acceptability of telehealth for the care of neuromuscular patients during the COVID-19 pandemic. Methods: Neuromuscular patients or their caregivers, as well as health care providers (HCPs), who completed a televisit during the pandemic received an online survey, assessing satisfaction with the visit, quality of care, and experience with the televisit interference. Results: Surveys from 46 neuromuscular patients (including 18 with motor neuron disease [MND])/caregivers and 7 HCPs were completed. Several aspects of televisits including good communication, adequate time to discuss concern, provision of equal care, and telemedicine interference were rated favorably among participants. Telehealth was strongly satisfactory in 30 (65.22%) and satisfactory in 15 (32.61%) neuromuscular patients/caregivers. In 18 MND patients, this was 10 (55.56%) and 7 (38.89%), respectively. Moreover, 24 (52.17%) neuromuscular patients/caregivers would strongly agree and 18 (39.13%) would agree to participate again in televisits. This was 10 (55.56%) and 4 (33.33%) for MND cases, respectively. Various medical issues were addressed during the televisits including medication management, ordering tests/referrals, discussion of goals of care, and research. The predictive stepwise logistic model found younger age as a predicting factor for higher satisfaction from, or participation again in, televisits in neuromuscular patients. Limb onset location was also a predicting factor for strong satisfaction from televisits in MND cases. Conclusions: Telemedicine is feasible and highly effective at achieving personalized care that was rated satisfactory by the majority of neuromuscular patients/caregivers and HCPs during the COVID-19 pandemic.

New acute onset of ocular myasthenia gravis after COVID-19 vaccine: A case report.

Reports have shown the association of coronavirus disease 2019 (COVID-19) with several neuromuscular disorders. Myasthenia gravis (MG) is an autoimmune disease in which antibodies bind to acetyl choline receptors in the postsynaptic membrane at the neuromuscular junction. The characteristic clinical feature of the disease is weakness of the ocular muscle, bulbar muscle, and extremity muscles; when the weakness is limited to the ocular muscle only, the condition is known as ocular myasthenia gravis. Diagnosis is usually confirmed by the acetylcholine receptor antibodies. Symptoms of MG may be aggravated by various types of infections and medications. Here, we are presenting a rare case of a new and acute onset of ocular MG presented after administration of Covishield vaccine.

Child neurology telemedicine: Analyzing 14 820 patient encounters during the first year of the COVID-19 pandemic

Aim: To determine the long-term impact of telemedicine in child neurology care during the COVID-19 pandemic and with the reopening of outpatient clinics. Method(s): We performed an observational cohort study of 34 837 in-person visits and 14 820 telemedicine outpatient visits across 26 399 individuals. We assessed differences in care across visit types, time-period observed, time between follow-ups, patient portal activation rates, and demographic factors. Result(s): We observed a higher proportion of telemedicine for epilepsy (International Classification of Diseases, 10th Revision G40: odds ratio [OR] 1.4, 95% confidence interval [CI] 1.3-1.5) and a lower proportion for movement disorders (G25: OR 0.7, 95% CI 0.6-0.8;R25: OR 0.7, 95% CI 0.6-0.9) relative to in-person visits. Infants were more likely to be seen in-person after reopening clinics than by telemedicine (OR 1.6, 95% CI 1.5-1.8) as were individuals with neuromuscular disorders (OR 1.6, 95% CI 1.5-1.7). Self-reported racial and ethnic minority populations and those with highest social vulnerability had lower telemedicine participation rates (OR 0.8, 95% CI 0.8-0.8;OR 0.7, 95% CI 0.7-0.8). Interpretation(s): Telemedicine continued to be utilized even once in-person clinics were available. Pediatric epilepsy care can often be performed using telemedicine while young patients with neuromuscular disorders often require in-person assessment. Prominent barriers for socially vulnerable families and racial and ethnic minorities persist.Copyright © 2022 Mac Keith Press.

Guillain-Barre Syndrome and COVID-19 Vaccine: A Report of Nine Patients

Introduction: Guillain-Barre Syndrome (GBS) is an autoimmune acute inflammatory demyelinating polyneuropathy usually elicited by an upper respiratory tract infection. Several studies reported GBS associated with Coronavirus Disease 2019 (COVID-19) infection. In this study, we described nine GBS patients following the COVID-19 vaccine.Methods: In this study, nine patients were introduced from six referral centers for neuromuscular disorders in Iran between April 8 and June 20, 2021. Four patients received the Sputnik V, three patients received the Sinopharm, and two cases received the AstraZeneca vaccine. All patients were diagnosed with GBS evidenced by nerve conduction studies and/or cerebrospinal fluid analysis.Results: The median age of the patients was 54.22 years (ranged 26-87 years), and seven patients were male. The patients were treated with Intravenous Immunoglobulin (IVIg) or Plasma Exchange (PLEX). All patients were discharged with some improvements.Conclusion: The link between the COVID-19 vaccine and GBS is not well understood. Given the prevalence of GBS over the population, this association may be coincidental;therefore, more studies are needed to investigate a causal relationship.