A statement on Covid-19 from the Encephalitis Society (updated 19th January 2021)

We support people who have been affected by encephalitis, this includes family members and those left bereaved by the condition, along with those professionals supporting them.

As a result of COVID-19 we are now also supporting people on the front line of the pandemic, working in tandem with our NHS colleagues and contributing to the health of the nation via national and international research on COVID-19, and related publications. 

We were first made aware of a case of a 56-year-old male in China who developed COVID-19 and went on to have the virus found in his cerebrospinal fluid (CSF): Xiang et al. unpublished, 2020. The patient recovered and was discharged from hospital. Despite being reported in the media this case remains unpublished in peer-reviewed literature as far as we know. 

Since then more reports began to emerge in the peer-reviewed, published literature of COVID-19 positive patients and meningo-encephalitis.

Early data suggests COVID-19 has neurological complications in around 30% of patients. In one study 5.6%[1] of these patients met the case definition for encephalitis. A second study reporting on a case series of 43 patients classified 12 of them as brain inflammation (nine were ADEM with the remainder a mix of autoimmune encephalitis.[2]  Two further studies looked at neuroimaging and encephalitis patients with COVID-19: one study suggested 13% of patients with COVID-19 and neurological complications were encephalitis[3] whilst the second, a case series of 25 patients who were SARS-CoV-2 positive and who had encephalitis concluded that SARS-CoV-2 is associated with a wide spectrum of encephalitis[4]

We understand that this will be a cause for concern among encephalitis survivors and their families, however we urge our beneficiaries and those affected in others ways to try not to worry and feel stressed about these emerging findings. Encephalitis from COVID-19 therefore is a significant but not common outcome when compared with the many people who survive the condition. Our support services and teams remain at your service, where you can phone, email us, chat online, or visit one of our digital gatherings online.

Our podcast series answer many of your questions and can be viewed on our podcasts page.

Importantly, some people who have or have recently had autoimmune encephalitis may still have immune systems that are compromised and/or they may also be taking medication that suppresses their immune system. Please listen to our Covid-19 and encephalitis podcast for more information about the risks and how you can keep yourself safe.

You can also access a range of other coronavirus and covid-19 resources including ones to help support your mental health and well-being during this difficult time. 

If you think you may have COVID-19 you must follow the latest guidelines for the country in which you live.

You can also take positive action by doing the following:

Do

  • wash your hands with soap and water often – do this for at least 20 seconds
  • always wash your hands when you get home or into work
  • use hand sanitiser gel if soap and water are not available
  • cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • put used tissues in the bin straight away and wash your hands afterwards
  • try to avoid close contact with people who are unwell

Don't

  • do not touch your eyes, nose or mouth if your hands are not clean 

The Encephalitis Society will continue to monitor developments closely through the information provided by the World Health OrganizationPublic Health England, the CDC, and the other international bodies.

Dr Benedict Michael, Vice Chair of the Scientific Advisory Panel - Encephalitis Society

Dr Ava Easton, Chief Executive of the Encephalitis Society.

[1] Varatharaj A., Thomas N., and Ellul M., Davies, N.W.S., Pollak, T. A., Tenorio, E. L., Sultan, M., Easton, A., Breen, G., Zandi, M., Coles, J. P., Manji, H., Al-Shahi Salman, R., Menon, D.K., Nicholson, T. R., Benjamin, L. A., Carson, A., Smith, C., Turner, M. R., Solomon, T., Kneen, R., Pett, S. L., Galea, I., *, ThomasR. H.,* Michael, B. D.*, on behalf of the CoroNerve Study Group. (2020) UK-Wide Surveillance of Neurological and Neuropsychiatric Complications of COVID-19: The First 153 Patients.  The Lancet Psychiatry. Published online first: June 25, 2020  DOI: https://doi.org/10.1016/S2215-0366(20)30287-X 

[2] Paterson RW, Brown RL, Benjamin L, Nortley R, Wiethoff S, Bharucha T, Jayaseelan DL, Kumar G, Raftopoulos RE, Zambreanu L, Vivekanandam V, Khoo A, Geraldes R, Chinthapalli K, Boyd E, Tuzlali H, Price G, Christofi G, Morrow J, McNamara P, McLoughlin B, Lim ST, Mehta PR, Levee V, Keddie S, Yong W, Trip SA, Foulkes AJM, Hotton G, Miller TD, Everitt AD, Carswell C, Davies NWS, Yoong M, Attwell D, Sreedharan J, Silber E, Schott JM, Chandratheva A, Perry RJ, Simister R, Checkley A, Longley N, Farmer SF, Carletti F, Houlihan C, Thom M, Lunn MP, Spillane J, Howard R, Vincent A, Werring DJ, Hoskote C, Jäger HR, Manji H, Zandi MS. The emerging spectrum of COVID-19 neurology: clinical, radiological and laboratory findings. Brain. 2020 Oct 1;143(10):3104-3120. doi: 10.1093/brain/awaa240. PMID: 32637987; PMCID: PMC7454352.

[3] Kremer S, Lersy F, Anheim M, Merdji H, Schenck M, Oesterlé H, Bolognini F, Messie J, Khalil A, Gaudemer A, Carré S, Alleg M, Lecocq C, Schmitt E, Anxionnat R, Zhu F, Jager L, Nesser P, Mba YT, Hmeydia G, Benzakoun J, Oppenheim C, Ferré JC, Maamar A, Carsin-Nicol B, Comby PO, Ricolfi F, Thouant P, Boutet C, Fabre X, Forestier G, de Beaurepaire I, Bornet G, Desal H, Boulouis G, Berge J, Kazémi A, Pyatigorskaya N, Lecler A, Saleme S, Edjlali-Goujon M, Kerleroux B, Constans JM, Zorn PE, Mathieu M, Baloglu S, Ardellier FD, Willaume T, Brisset JC, Caillard S, Collange O, Mertes PM, Schneider F, Fafi-Kremer S, Ohana M, Meziani F, Meyer N, Helms J, Cotton F. Neurologic and neuroimaging findings in patients with COVID-19: A retrospective multicenter study. Neurology. 2020 Sep 29;95(13):e1868-e1882. doi: 10.1212/WNL.0000000000010112. Epub 2020 Jul 17. PMID: 32680942.

[4] Pilotto A, Masciocchi S, Volonghi I, Crabbio M, Magni E, De Giuli V, Caprioli F, Rifino N, Sessa M, Gennuso M, Cotelli MS, Turla M, Balducci U, Mariotto S, Ferrari S, Ciccone A, Fiacco F, Imarisio A, Risi B, Benussi A, Premi E, Focà E, Caccuri F, Leonardi M, Gasparotti R, Castelli F, Zanusso G, Pezzini A, Padovani A; SARS-CoV-2 related encephalopaties (ENCOVID) Study Group. Clinical Presentation and Outcomes of Severe Acute Respiratory Syndrome Coronavirus 2-Related Encephalitis: The ENCOVID Multicenter Study. J Infect Dis. 2021 Jan 4;223(1):28-37. doi: 10.1093/infdis/jiaa609. PMID: 32986824; PMCID: PMC7543535.