Covid-19 and people with neuromuscular disorders

28 March 2020

The World Muscle Society Position and Advice for managing COVID-19 in people affected by neuromuscular conditions

Dr. Maxwell Damian together with more than 80 specialists in the field collated the WMS Covid-19 advice for neuromuscular patients, carers, general neurologists and non-specialist medical providers. This document is also intended to inform neuromuscular specialists particularly regarding frequently asked questions and basic service requirements. 

The latest version of the WMS Covid-19 advice can be downloaded here

History of versions:

Version 1 – WMS Covid-19 advice 28-03-2020

Version 2 – Update 02-04-2020

Version 3 – Update 20-04-2020

Version 4 – Update and Deconfinement 10-05-2020

The advice is endorsed by the Members of the Board of the WMS (www.worldmusclesociety.org), colleagues from the Editorial Board of Neuromuscular Disorders, the official journal of the WMS, EAN Scientific Panel Muscle & NMJ disorders, ERN EURO-NMD, Treat-NMD and ENMC.

Translations:

Arabic by Rasha el Sherif
Czech by Jana Haberlova
Chinese (Traditional) by Wen-Chen Liang
Dutch by Peter van den Bergh and Nathalie Goemans
French by Shahram Attarian
German by Benedikt Schoser (Nichtinvasive Heimbeatmung NME Deutsch WMS recommendation + COVID-19 WMS Empfehlungen Update 10-MAY-2020)
Hungarian by Rita Horvath
Indonesian Luh Ari Indrawati
Italian by Antonio Toscano (+27-04-2020 WMS Covid-19 document Updated Italian version)
Japanese by Madoka Mori-Yoshimura, Wakako Yoshioka, Ichizo Nishino
Korean by Jongmok Lee
Malay by Khean-Jin  Goh
Polish by Anna Kostera-Pruszczyk
Portuguese by Teresina Evangelista
Portugese (Brazil) by Mariz Vainzof
Spanish by Montse Olivé
Swedish by Mar Tulinius and Anders Oldfors
Turkish by Haluk Topaloglu

For new updates and amendments of the Covid-19 advice and subsequent translations; click here

Also please see a directory of guidelines / information resources relating to neurological disorders as posted on the EPNS website. There is useful information also for NMD patients.

From Joshua Benditt MD, Medical Director of Respiratory Care Services and General Pulmonary Clinic in Seattle, USA, we received a COVID-19 Plan and Preparation Guide for Adults with NMD put out by one of the NMD United patient groups and designed for patients as to best practices to stay safe in the current situation.

 

For some of the sections, amendments were made: Update 02-04-2020 to WMS advice Covid-19.

ENMC White Paper

On Rare Disease Day 2020, the outcomes and consensus from the ENMC workshop on “The position of the neuromuscular patient in shared decision making” are now published in a WhitePaper. The workshop participants represented a wide range of stakeholders from 15 different countries: patients and parents, representatives from neuromuscular diseases organisations, clinicians, health care professionals, researchers, societal and policy researchers, psychologists, ethicists, representatives from regulatory authorities and pharmaceutical companies. The White Paper is based on the outcome of the workgroup discussions (published by Lochmuller et al, 2019 and Ambrosini et al, 2019) and, in particular, it reports the consensus reached on specific recommendations for patient organizations and health care professionals, together with key examples analysed during the meeting.

It is a call to action to all stakeholders to become ambassadors and promote the direct involvement of people living with a neuromuscular disease in all aspects of health care and medicine development related to their disease. 

The workshop took place in Milan, Italy in 2018 and was attended by 45 participants from 15 different countries.

 

ENMC bibliometric report published

The CWTS bibliometric report on ENMC workshop derived publications is now available.