Coronavirus and ME Image credit: Photo by CDC on Unsplash **If you feel overwhelmed we have put together a simplified (frequently updated) guide to current information for people in Australia with ME/CFS concerned about the Coronavirus. You can find this information by clicking on the link below or via our 'News' page. https://www.emerge.org.au/blog/coronavirus-and-me-simplified-facts We know that many people with ME/CFS (as well as those caring for them) are experiencing concern about the spread of, and possibly contracting, coronavirus. “We know that many people with ME/CFS in Australia are concerned about the risks associated with the spread of the new coronavirus disease COVID-19. We recognise that people with chronic illness have valid reasons for additional caution at this time. Traditional media and social media reports are relentless and it can be difficult to remain focused on good sources of information about how to protect yourself. We hope that you find the information below to be useful.” Dr Heidi Nicholl, CEO - Emerge Australia. In the first instance if you are concerned about coronavirus we recommend that you: Discuss any particular queries or concerns you (and/or your carer) may have with your GP or healthcare professional Read through the particular resources below and speak to a friend or carer (if you can) to formulate the questions that you have specific to your own situation It is also important to regularly check the following Australian Government websites, for information about COVID-19, including how to protect yourself and minimise your risk: Department of Health - Coronavirus (COVID-19) General information: https://www.health.gov.au/news/health-alerts/novel-coronavirus-2019-ncov-health-alert Resources: https://www.health.gov.au/resources/collections/novel-coronavirus-2019-ncov-resources?fbclid=IwAR2EUEIJ7gqSfzt4i-wTKn5hH0iCoipJipA_UuqsnMqZuYaZU0dueJ61fk4 The Centers for Disease Control and Prevention (CDC) in the US has the following guidance for people at higher risk for COVID-19 complications: https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html Briefly they suggest (trying to) make sure you have enough medications on hand in case you need to stay home for a prolonged period (in the event of quarantine), limiting close contact with people and washing your hands often. Here at Emerge Australia we acknowledge that this may not be possible and people should not panic buy or stockpile medications. We also know that frequent hand washing may not be possible for people with ME/CFS so, if available, alternatives like alcohol based antimicrobial hand sanitisers can be kept at the bedside. The World Health Organisation website has great advice including downloadable fact sheets on how to cope with stress caused by the outbreak: https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public Their advice in short is:- Wash or sanitise hands frequently Maintain social distancing Avoid touching eyes, nose and mouth Practice good respiratory hygiene (cough or sneeze into an elbow, dispose of tissues promptly and safely) If you have fever, cough and difficulty breathing seek medical help promptly Finally you can use this resource to promptly find local GPs, pharmacies and health services (good if you need to phone round and see if there is a home service or phone service available): https://health.govcms.gov.au/resources/apps-and-tools/healthdirect-find-a-health-service ME/CFS Specific Resources Patient and advocate Jennie Spotila has put together some useful information on COVID-19 gathered from several infectious disease doctors, public health sources, and an ME specialist. Her detailed post covers what the new virus is, whether you should panic (spoiler alert: no!) and some useful suggestions especially designed for people with ME/CFS. She also includes current relevant stats and advisories: http://occupyme.net/2020/02/28/a-new-virus-and-me/ Dr Nigel Speight (with the help of Dr Willy Weir) has put together the following advice for people with Severe ME/CFS. He notes that, "Although ME is a “chronic condition” my gut feeling is that [people with ME/CFS] are not actually at greater risk of dying from the virus itself than healthy people. The conditions which put people at extra risk would be things like severe asthma or COPD, or immuno-suppressed people (e.g. those on chemotherapy for cancer). The biggest worry therefore for ME sufferers is that catching the virus will make their ME much worse." His advice is to be (unashamedly) very cautious, discourage visitors - if you can tolerate the isolation - and add additional Vitamin D to help fortify the immune system against the virus. He does note that people with severe ME/CFS are actually at lower risk of catching the virus because they do not go out, therefore reducing the chances of community transmission. https://solvecfs.org/coronavirus-and-members-of-the-25-me-group-severe-me-charity/?fbclid=IwAR0l259FaVmMPSbAnn9qn-YXnYuH7kPmqWAl0zmwyI_E8eAjsT0nlqdIHwY There is also a great resource from the Center for Disability Rights about what to do if you use support workers and you - or they - need to be isolated. http://cdrnys.org/blog/programs-services/action-steps-for-attendant-service-users-in-response-to-coronavirus-disease-2019-covid-19/?fbclid=IwAR1ZH9cNkvCgQ4xNiJCom0_V_jBLggIfx5QtBWHt3UFuXlDAr_T-k0R_X_o Lastly we've included this excerpt from an article originally published by the ME Association in the UK. Coronavirus infection and ME/CFS (extract) Article by the ME Association (UK) Written by, Dr Charles Shepherd, Hon Medical Advisor ME Association, 11 February 2020 https://www.meassociation.org.uk/2020/02/coronavirus-infection-and-me-cfs-11-february-2020/ "As ME/CFS involves immune system activation, rather than immune system deficiency, there are theoretical reasons to indicate that having ME/CFS does not place someone at increased risk of catching this virus. But if you do, as with any infection, the effects are likely to be more serious. Prevention of Spread As with flu viruses at this time of year, there are a number of simple practical precautions that will help to reduce the chance of picking up this infection. Infection containing droplets from coughs and sneezes stay in the air for a short time and then land on surfaces where they can remain infective for several hours, possibly even longer. The first step involves avoiding (where possible) crowded places – such as public transport – where people are coughing and sneezing. The second involves washing your hands when you have been in contact with a surface that lots of other people have been touching. In particular are things like public toilets, cash machines, the trays that are used for security checks in buildings and airports, and also shaking hands! Thorough hand washing with soap and warm water after contact with potentially infected surfaces is more effective than using antiseptic wipes – which are still useful if you are out and about. Cheap face masks are of no real value as the viral particles are minute and can only be kept out of the mouth and nose and eyes (which are another route for infection) by the sort of masks used by health workers."