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MSWA Bulletin Winter 2020

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Telehealth at MSWA, Feedback from Customer survey, Eating mindfully, Research roundup

RESEARCH FROM THE MS

RESEARCH FROM THE MS TRUST UK Read more at: mstrust.org.uk Preliminary research on Covid-19 in people with MS in Italy offers some reassurance. People with MS who contracted COVID-19 did no worse than the general population according to preliminary results from Italy. Researchers in Italy have been collecting data to understand the relationship between MS and COVID-19, trying to understand whether having MS increases the risk of a more severe COVID-19 infection, and whether taking disease modifying drugs may add any extra risk. The Italian MS Society (AISM), the Italian MS Foundation (FISM), and the MS Study Group of the Italian Neurological Society set up an online platform to record and collect data about people with MS in Italy, who were diagnosed with COVID-19 or developed symptoms (suspected COVID-19). MS neurologists across Italy were asked to input data and share patient outcomes. Early results from the data collected have now been published; this includes 232 people with MS who tested positive for COVID-19 (57 people) or have suspected COVID-19 (175 people). Of the 232 people, 211 were taking a disease modifying drug. They recorded the severity of COVID-19 in these 232 people: / 222 (96%) had a mild infection / 4 (2%) had a severe infection / 6 (3%) had a critical infection Of those who were critical, one recovered and five died; those who died tended to be older (50+) and have other health conditions. It's too early to say from this data whether DMDs make a difference to COVID-19 recovery, but it does not suggest that the current DMD advice should be changed. Although this research is preliminary and the numbers are small, these results are reassuring for people with MS. They suggest that having MS doesn’t increase your likelihood of a more severe COVID-19 infection and that the majority of people with MS are likely to have a mild infection, the same as the general population. FROM THE NATIONAL MS SOCIETY Read more at: nationalmssociety.org Plasma neurofilament light levels are associated with the risk of disability in multiple sclerosis, Ali Manouchehrinia, PhD, et al; Karolinska Institutet; Neurology May 20, 2020. Higher blood levels of a molecule called neurofilament light chain (NfL) were associated with progression of disability in blood samples from 4,385 people with MS. Although further study is needed before this blood test can be used routinely to predict disease course and guide the care of individuals with MS, these findings add to growing evidence that NfL has potential as a predictive biomarker of MS disease activity and disability progression. NfL is a fragment and part of the debris that enters the spinal fluid and blood when nerve wires (axons) are damaged. Studies of NfL in the bloodstream and spinal fluid have been underway to better define how this biomarker may be used to help detect and predict disease activity and response to treatments, not only in MS but in other disorders. In this large Swedish study, 4,385 people with MS from Swedish MS registries, and 1,026 people who did not have MS, had NfL blood levels tested; and the participants were followed up for five years. People with MS had significantly higher levels of NfL in their blood, compared to people without MS. Higher NfL levels were significantly associated with worsening disability during the next year and with the likelihood of reaching moderate disability (affecting daily activities but not walking ability). This large study adds to a growing body of knowledge needed to determine the best use of NfL as a biomarker for MS care, treatment decisions and clinical trials. Additional studies underway will help standardise its use and help understand how age and other health conditions impact NfL levels. 10

NURSING HAVE YOU HAD YOUR FLU SHOT? SUE SHAPLAND RN, BN, MSCN GENERAL MANAGER STRATEGIC SUPPORTS AND RESIDENTIAL OPTIONS Each winter brings the risk of flu and vaccinations are recommended for those at risk: the young, the elderly and those with existing illnesses. It has been more highly recommended by the Government this year due to the added risk of COVID-19. The vaccination is recommended annually as it wears off after three to four months; last year’s extended flu season saw some people vaccinated twice. Our Members often ask if they should have the vaccination or not. Our medical advisor Professor Bill Carroll AM offers the following comment: "There is no evidence that these vaccinations make MS worse or cause a relapse. Should a relapse occur, around the time of 'flu' vaccination it is thought to be coincidental. Occasionally people with MS having vaccinations can have a brief exacerbation of existing MS symptoms; but this is not worsening of MS. People with MS are advised to discuss this with their treating neurologist or physician as soon as possible as it is essential to have the vaccination earlier rather than later to reduce the risk of contracting the flu.” Don’t forget that your GP and / or neurologist can advise you on these and other important health matters. The Government funded Health Direct website: healthdirect.gov.au/ colds-and-flu-treatments is packed with health information and advice, including flu updates and tips to help reduce the spread. While it can happen any time, it's more common to catch the flu, or experience flu-like symptoms, in the colder months of the year (April to October). 6 ways to fight the flu; most of which apply to preventing the spread of COVID-19 and other infections: Get your annual flu vaccination to be protected. It reduces the chances of both catching and transmitting the flu. See your GP or local pharmacy for advice. Wash your hands for 20 seconds and frequently; good hand hygiene is the best way to prevent the spread of colds and flu and other infections. Use soap and water or hand sanitiser. Cover your coughs and sneezes; this prevents the spread of infected droplets to others and surfaces. Bin your tissues; throw tissues in the bin after use and then wash your hands. Avoid sharing cups, plates, cutlery or towels with others. Self-care at home; mostly you can treat the symptoms of a mild cold or flu yourself. Most people will get better within 7-10 days without any treatment. Get plenty of rest, drink plenty of water and non-alcoholic drinks, keep warm, eat a healthy diet and avoid exposure to cigarette smoke. Your pharmacist can assist with over the counter treatments if necessary. If you live alone, let someone know you aren’t feeling well so they can keep an eye on you. See your doctor if you are unwell and experiencing high temperatures, headache, breathing difficulties or a rash, or if you are worried at all. You can speak to a registered nurse for free advice 24/7 by calling Health Direct on 1800 022 222. 11