|Last week I wrote to ECTRIMS to suggest that they email their neurologist list to suggest they use a common Twitter hashtag. |
Is this the response?
The global spread of COVID-19 has had a deep impact on our daily tasks and we are currently experiencing a challenging time in terms of the treatment of our patients with MS as well as other autoimmune diseases. The current circumstances are very concerning and also unclear for MS patients in the context of COVID-19 infections. In such a situation it is important to receive up-to-date information on the newest developments. Many National MS Societies have published statements for patients with MS as well as for neurologists. We recommend to consult recommendations and guidelines issued by your national and local health authorities.ECTRIMS would also like to make everybody aware of the statement published by MSIF. This patient-oriented statement can be a helpful source of information for patients living with MS.Furthermore, ECTRIMS strongly encourages you to document all patients with COVID-19 infections in one of the available registries. ECTRIMS can recommend the “Lean European Open Survey on SARS-CoV-2” (LEOSS), as a pan-European registry, which allows documentation of a core set of MS-specific items. The more patient data is documented in the registries, the more information we can gain from them. We wish you all the best for this challenging time and hope that you will stay healthy.
I had a quick look at this site, which was set up by the German Infectious disease Society and is recommended by the German ECTRIMS President, it has 365 members but only 159 cases so far.
However, if you are in the UK I would suggest that you Sign up to the MS registry, they already have a few thousand people and don’t forget to use #MSCOVID19 so we can have a look at the anecdote.