Around the world, people will be reacting to the coronavirus (COVID-19) crisis differently. Perhaps you feel worried, anxious, sad, tearful, bored, exhausted, lonely, depressed or you have a short fuse and are quick to anger. You may have pre-existing anxiety and this is making it worse.

Worry can manifest itself in many different ways both mentally and physically. One day you might feel happy and confident and the next day the worry returns. It can be a rollercoaster of emotions and there is no right or wrong way to feel. Just remember that this particular situation is temporary — you won’t be experiencing this forever. 

It is important that you focus on making sure that you can look after yourself and prioritise your health and wellbeing. Anxiety can trigger your flight-or-fight stress response and release a flood of hormones like cortisol and adrenaline and chemicals to weaken your immune system, putting stress on your body. Higher levels of cortisol have been linked to MS progression and severity. 

Fortunately, there are a number of things you can do to improve your wellbeing during this time and many of them will be useful actions to go back to whenever you go through a stressful time.

Stay connected 

When we think about leading a healthy lifestyle, thoughts often turn to diet and exercise, but in addition to that, social connection can improve our physical and mental health. When you are in isolation at home, your social interactions naturally decrease. This is why it is beneficial to set up video calls and messages instead of meeting in person. It can be such a relief to talk with friends and can leave you feeling recharged and positive. There are some fun things you can organise via video call, such as quizzes, games, sharing music, book groups and even dinner parties! Even if you don’t feel like it, once you get chatting you’ll feel better. 

Don’t bottle up your worries

Sometimes we bottle up our feelings, even without realizing it. It can help to share any concerns you have with friends, family or within our OMS online community — it often helps to talk about something and have a ‘me too!’ response from someone so that you know you are not alone. 

Offer support, if you are able

Giving to others can also help to improve your mental and physical health. It can help to take the focus off yourself and provide a sense of purpose. It is vital that you follow guidelines from your health provider, so if you are in isolation think how you can help others while still staying at home. Things like encouraging others on an OMS forum, messaging a friend or family member to tell them that you are thinking of them, or doing something for someone you live with like giving them a hug, cooking a meal or running them a bath. 

Get organised

Organization has been known to improve mental and physical health, reduce stress and improve sleep! Time at home will allow you to get organized.

If you haven’t done so, talk through the current situation with your employer and understand your rights and benefits if needed in the future. 

Now is the time to sort out that closet, organize any paperwork or decorate the house if you want to. The sense of accomplishment will be positive, but make sure you take regular breaks if you feel any MS fatigue. 

Don’t forget your physical health

Sometimes it can be easy during a stressful time to lapse on your healthy lifestyle. But now is actually the time to focus on it more than ever as it will make you feel good, boost your immune system and help to manage your MS symptoms. Worry and stress can cause physical symptoms such as chest pain, heart palpitations and muscle aches, which could be confused for coronavirus symptoms. If you haven’t already done so, take a look at the OMS recovery program and read through some of our stories of hope for inspiration.

Focus on the advice from your health service 

There is a lot of misinformation about the coronavirus out there. Before sharing something on social media, check the facts out first. There are a number of fact-checking organizations, such as Snopes. 

Follow the advice from your doctor and health service. 

Limit the time you spend on social media and watching the news

It’s good to be informed, so set a time each day to check the news headlines. But don’t become absorbed by it. Social media can offer support, distraction and social connection for many, but again, too much can be overwhelming if it is coronavirus-related content, so limit yourself. 

You can hide Facebook posts and mute WhatsApp groups if you find that they make you feel anxious. You can also mute keywords on Twitter and unfollow or mute accounts which are triggering worry. 

Focus on things you can control

Anxiety is rooted in worrying about the unknown and the fear of being out of control. Lack of control about the world’s state of affairs can be depressing and can cause worry — the coronavirus is this on a macro scale. 

Acknowledge that you can’t control the coronavirus, or the actions of other people and focus on the things you can control. You can choose who you want to talk to outside the home when in isolation so choose people who are encouraging and supportive. Choose where you get information from and prioritize your health. 

Meditation will also help to focus your mind, reduce stress and improve your health and wellbeing. Take a look at our free guided meditation that you can do from the comfort of your own home.

Have some fun at home

Plan some fun things to do in the home — cinema nights, candlelit dinners with a loved one, making delicious OMS recipes, taking up a hobby such as painting or crafting, working out with a home gym, gardening, DIY projects (if you enjoy them!), scheduling in pamper nights — the list is endless. 

Exercise routine

Exercise produces endorphins (natural painkillers) which make you feel good and also improves the ability to sleep, which in turn reduces stress. In terms of exercising out of the house, such as a local walk, follow your current guidelines provided by your government and doctor. If you are inside, check out the online exercise videos available to suit all levels and abilities. To improve your sleep, avoid caffeine and limit screen time before bed. 

It’s all about the here and now

MS breath-based meditation will help to focus your attention on your body and mind in the present. Consciously making the effort to direct your attention to the present, rather than worry about the future, is a very powerful tool. If you feel yourself worrying about the future, focus on your five senses: what you can hear, see, taste, feel, and smell. Practicing this technique eradicates all worries we may project in the future as it leaves no room for them.

If you still feel overwhelmed, seek professional advice from your doctor and remember that there are 24/7 helplines if you need to talk to someone in confidence. There are many things we can do to support and manage our wellbeing during times of uncertainty, and the OMS community are here to support you.

As the number of cases of Coronavirus continues to increase around the world, we have had many queries from people with MS who are quite rightly concerned about what it might mean for them, and how the disease modifying treatments (DMTs) might affect their individual risks.

Whilst much of our original post is still relevant, it is important to recognise that the situation is changing extremely rapidly, and it is vital to follow the guidance from the health Authorities and Government in your area, regarding travel, self-isolation and impact on local services.

With regards to MS treatments and Coronavirus, the advice is also evolving, and we will always aim to give you the best possible information as it made available.

With this is mind, we refer you to the following resource, published by a team of leading U.K. neurologists on 11th March 2020:

PDF: Coronavirus and Disease Modifying Treatment (DMT)

AUTHOR: Alasdair Coles and the MS Advisory Group, in consultation with

• Dr Ming Lim, on behalf of paediatric MS group

• Prof Gavin Giovannoni, on behalf of MS Academy

• Phillip Anderson for the MS Society

ABN ADVICE FOR PEOPLE WITH MULTIPLE SCLEROSIUS ON DISEASE-MODIFYING THERAPIES BACKGROUND

1. There is considerable uncertainty about the impact of covid19 coronavirus on the UK. As of 6th March 2020, the government has advised that the risk of widespread infection with covid19 coronavirus in the UK has risen from low to moderate. The Chief Medical Officer has estimated that the likely duration of an epidemic in the UK, if it occurs, is 6 months.

2. Covid19 coronavirus infection is more likely to occur, and more likely to have serious consequences, in people with compromised immune systems. All MS disease-modifying therapies affect the immune system, to varying degrees. So, it is important that all people with MS take simple preventive measures seriously.

3. Covid19 coronavirus infection does not lead to neurological symptoms and should not be mistaken for a relapse of MS.

GENERAL HEALTH ADVICE FOR PEOPLE WITH MULTIPLE SCLEROSIS

• People with MS (pwMS) should follow diligently the advice given to the public on travel, self-isolation and response to potential symptoms of a coronavirus infection. This advice is updated regularly and is available here: https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public

• In summary, anyone with symptoms to suggest Coronavirus should contact 111. Prevention of coronavirus is difficult because people are often asymptomatic when infected, but hand hygiene is important. As the coronavirus is an enveloped virus it is mainly spread via droplets, is not aerosolized, and is most effectively dealt with by frequent handwashing with soap.

• There is no treatment for coronavirus infection and no drug that can be used by immunosuppressed people to prevent infection.

ADVICE FOR PEOPLE CURRENTLY ON A DISEASE MODIFYING TREATMENT

1. Do not change or stop your medication without first speaking to your MS team.

2. If you have an appointment to come to hospital for a review or treatment, and you have cough, high temperature or shortness of breath please do not come to the hospital, but contact your MS team for advice.

3. If you are on interferon beta 1a, interferon beta 1b, copaxone, teriflunomide, dimethyl fumarate and natalizumab, please continue to take these drugs. They do not significantly increase the risk of systemic viral infections.

4. If you are on fingolimod, please be aware that the risk of viral infections is moderately increased. So you may be more prone to coronavirus infection and its complications. For most people on fingolimod, this risk is outweighed by the effectiveness of fingolimod in controlling their MS. So, we recommend most people continue on fingolimod. It is important not to stop fingolimod without speaking to your MS team, because there is a risk that multiple sclerosis will become active and cause relapses in the weeks after stopping the drug.

5. If you are on ocrelizumab, please be aware that the risk of viral infections is moderately increased. So you may be more prone to coronavirus infection. For many people on ocrelizumab, this risk is outweighed by the effectiveness of ocrelizumab in controlling their MS. The MS team may consider delaying a further round of ocrelizumab until the risk of coronavirus infection is clarified or has passed, because it is clear from experience with a similar drug, rituximab, that an infusion of ocrelizumab will remain effective at controlling MS for longer than 6 months.

6. If you have had one round of cladribine or alemtuzumab, and are due another round, then you should discuss this further with your MS team. The risk of viral infections is highest in the three to six months after alemtuzumab and cladribine. Therefore it is sensible to delay the second round of treatment until the risk of coronavirus infection has passed. It is safe to increase the gap between the first and second alemtuzumab treatments to 18 months, without a risk of a return of MS activity. The data are less clear for cladribine. If delaying treatment is a concern, it would be reasonable to consider switching to another treatment.

7. If you have had two rounds of treatment with cladribine or alemtuzumab and are well, please be aware that the risk of viral infections is slightly increased. There is no need for you to have any further treatment, unless you have symptoms, or signs on an MRI scan, that your multiple sclerosis is becoming active again, in which case, please see [8].

8. If you have had two rounds of treatment with cladribine or alemtuzumab and your MS has become active then you might consider having a further round of treatment with cladribine or alemtuzumab. You should discuss this further with your MS team. The risk of viral infections is highest in the three to six months after alemtuzumab and cladribine. For most people, it would be preferable to consider switching to another treatment.

ADVICE FOR PEOPLE STARTING A DISEASE MODIFYING TREATMENT

1. The choice of disease modifying treatment for someone with MS is complex and takes into account many factors. The potential for a period of some months with an increased risk of coronavirus infection should be part of these considerations. Roughly speaking, the more effective MS therapies confer a greater risk of infection, and the potential harm from infection is greater. Nonetheless, for some pwMS the risks of the disease being untreated, or partially treated, are sufficiently high that the more effective therapies are justified.

2. The following disease modifying treatments do not significantly increase the risk of viral infections: interferon beta 1a, interferon beta 1b, copaxone, teriflunomide and dimethyl fumarate. It is important to comply with blood monitoring on these drugs, which ensures that the immune system is not excessively suppressed. Once these drugs are stopped, the immune system recovers over several weeks.

3. Natalizumab is a highly effective therapy, with very few side effects in the first six months of treatment. Its use is restricted to people with “rapidly evolving MS”. Natalizumab does increase the risk of viral infections in the brain, but Covd19 does not affect the brain. Once stopped, the immune system recovers over several weeks.

4. Fingolimod is an effective treatment of MS but causes a moderate increase in the risk of viral infections whilst you take the drug. It is a tablet and, once stopped, the immune system usually recovers in several weeks.

5. Ocrelizumab is a highly effective treatment of MS and more effective than fingolimod. After the first two infusions [a fortnight apart], it causes a moderate increase in the risk of viral infections that persists for months. If someone on ocrelizumab gets coronavirus, the drug’s effects on the immune system cannot be reversed, so the likelihood of complications from an infection is probably higher than if taking a drug which can be stopped.

6. Cladribine and alemtuzumab are highly effective treatments of MS and are given as two rounds of treatment, separated by twelve months. However, there is a very significant risk of viral infections in the three to six months after a round of alemtuzumab and cladribine. Therefore we would advise delaying the start of these treatments until the risk of coronavirus infection has passed. Most people considering these drugs will have active multiple sclerosis and so delaying treatment altogether may not be wise. In which case it would be reasonable to consider starting another treatment.

7. Haematopoietic stem cell transplantation (HSCT) is an intense chemotherapy treatment for MS, which carries a very high risk of infections for many weeks. We would recommend postponing this treatment until the risk of coronavirus has receded.

ADVICE FOR PEOPLE ON DMTS WHO HAVE A CORONAVIRUS INFECTION

1. If you are infected with Covid19, then we recommend stopping your diseasemodifying therapy [if it is an injectable or oral treatment] or delaying your next infusion. You MS Team will advise when it is safe to restart.

ADVICE ON INNOVATIVE TREATMENTS

1. Siponmiod, fatumumab and rituximab are not currently available on the NHS, but are available by private prescription in the UK. These will increase the risk of coronavirus infection, and should only be used after careful discussion with the MS team.

2. Clinical trials of experimental drugs. We recommend you speak to the trial team about the risk of coronavirus infection. // END

Advice

For more information on the current situation in your area and for travel advice and restrictions, please refer to your local Public Health Authority and Government information sources.

• UK https://www.gov.uk/government/organisations/public-health-england
• The Netherlands https://www.rivm.nl/coronavirus/covid-19/vragen-antwoorden
• Germany https://www.bundesgesundheitsministerium.de/
• Italy http://www.salute.gov.it/nuovocoronavirus
• US https://www.cdc.gov/coronavirus/2019-ncov/index.html
• Canada https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/latest-travel-health-advice.html
• Australia https://www.health.gov.au/news/health-alerts/novel-coronavirus-2019-ncov-health-alert 
• New Zealand https://www.health.govt.nz/our-work/diseases-and-conditions/covid-19-novel-coronavirus 
• WHO https://www.who.int/emergencies/diseases/novel-coronavirus-2019/travel-advice
• EU https://www.ecdc.europa.eu/en/coronavirus 

1 - Why is MS spasticity worse at night?

Spasticity is one of the most common MS symptoms, and often feels worse at night. This is because it can be aggravated by reduced movement, tight muscles and pain from other symptoms. Find tips, ideas and exercises you can do to help.
 

2 - MS treatment and hair loss: what you need to know

Hair loss is not a symptom of MS, but can be a side effect of various MS treatments. Find out all you need to know about contributing factors, triggers and ways you can improve hair growth. 
 

3 - How to deal with night sweats when you have MS

Many people look forward to the summer months, longer days and a rise in temperature. However, because people with MS are especially sensitive to temperature, this increase in heat can result in many restless nights, waking up drenched in sweat and struggling to ever feel cool and comfortable. 
 

4 - Vaccines and MS Update

What implications are there for different types of COVID-19 vaccines, for people with MS? Dr Jonathan White answers this question and more. 
 

5 - Monthly Meditation Plan

Daily meditation is highly beneficial for people with MS, as it can positively impact mental health and reduce stress. Our monthly guide gives you 30 guided meditations from the OMS community that can help you get started, and all of them are available for free online. 

6 - MS and fever

Fever can be particularly difficult for people with multiple sclerosis (PwMS) because of the heat stress caused by temperature increases. Although regular cold and flu symptoms can be bad enough, fever can also make existing or old MS symptoms worse, as well as causing periods of 'cold chills'.
 

7 - I used to love dairy, what healthy OMS-friendly alternatives are available

There are so many dairy-free options available that avoiding dairy doesn't need to mean that you miss out on the food you love. 

8 - Coimbra Protocol: Vitamin D & MS

The Coimbra Protocol promotes using high-dose vitamin D to treat MS and claims to have seen good results. Find out more on this, in our blog.

9 - Does caffeine affect MS: What you need to know

Research has shown coffee to have an anti-inflammatory effect, and to reduce the likelihood of developing MS, but it is unclear why. High doses can worsen certain symptoms, and there is mixed advice around the benefits - but a moderate amount of coffee should not be detrimental to PwMS. 
 

10 - A list of exercise tips for MS

Exercise is a vital part of the OMS lifestyle program. There is a large body of evidence demonstrating the positive effect of exercise for pwMS, so here are some tips to help you understand how different exercise styles help with different MS symptoms.

There are currently around 150 drugs being trialled in different countries, aiming to establish if they are effective against the novel coronavirus (COVID-19).  Most are repurposed drugs, that is, they are existing drugs used to treat other conditions such as malaria, ebola and multiple sclerosis, now being tested in patients with COVID-19.

Why re-purpose drugs?

Novel drug development is slow and impractical, particularly in a pandemic.  An alternative approach is to repurpose existing drugs - these drugs will already have proven themselves to be safe in early testing, meaning they can be fast-tracked straight into the final stages of clinical development.  There are other benefits in terms of cost, particularly if the drug is off-patent, and ease of production if the drug is already on the market.

Examples of this happening with MS drugs include ibudilast (an asthma drug), metformin (a diabetes drug)  and cancer drugs such as cladribine an mitoxantrone.

There are currently three categories of drugs being investigated to treat COVID-19:

1. Antiviral drugs, targeting the coronavirus and its ability to survive and replicate inside the body
2. Antibodies that target the virus; taken from survivors' blood or made in a lab
3. Drugs that calm the immune system (severe Covid-19 is thought to be caused by patients' immune systems over-reacting and damaging the body) – these are the ones similar to MS drugs

Inflammatory response

A simple inflammatory response — the innate immune system — is your body's first line of defence. Your immune system is a network of organs, cells and tissues.  Infection-fighting white blood cells (leukocytes) find and destroy substances and micro-organisms that the body recognises as a threat.

MS is considered to be an auto-immune disorder, where the body’s immune system mistakenly considers itself to be a threat and mounts an inflammatory attack against the target tissue (in this case the myelin sheath surrounding many nerve cells).

COVID-19 also illicits an inflammatory response – the virus persisting in the body can cause significant damage to the lungs and blood vessels and may lead to inflammatory over-reaction in the most severe cases. As mentioned above, aa part of a healthy immune response, white blood cells recognise the virus. They release chemicals called cytokines that attract other immune cells to the site of an infection. These are activated so that they can kill cells infected with the virus. But if too many cytokines are released in a short period, cells not infected by virus may also be killed – causing damage to healthy tissue. In patients with severe COVID-19, cytokine levels are far higher than in patients with mild disease.

Steroids (dexamethasone)

The use of dexamethasone, a steroid, has been a significant breakthrough in the fight against coronavirus.

The UK's Recovery trial showed dexamethasone cut the risk of death by a third for patients on ventilators and by a fifth for those on oxygen. 2,104 patients received this drug by mouth or injection and were compared to 4,321 who received standard care alone.

Dexamethasone is a steroid that dampens down the inflammatory response in the body. It does this by preventing infection-fighting white blood cells from travelling to the area of damage in your body. (This is why you are more prone to infection while taking steroids). It is commonly used for eye inflammation and to decrease swelling associated with tumours in the spine. It is also used in  some autoimmune diseases.

Crucially it is also low cost, meaning that it could be used widely around the world. However, the drug does not appear to have any benefit in people with milder symptoms. Steroid therapy dampens the immune response in general, and is rather a crude instrument, attempting to fine-tune a very complex machine (the immune system).  Newer treatments are emerging that can target and block specific cytokines involved in these harmful responses.

Steroids like these are used to treat acute MS symptoms – dexamethasone was  originally approved by the U.S. Food and Drug Administration in 1958 for the treatment of acute relapses in MS. It is believed that it works by an anti-inflammatory mechanism and it works as an immunosuppressor.

Interferon beta

Interferon beta is an MS DMT being repurposed for COVID 19 patients. Interferon beta is a protein that the body normally makes to dampen down inflammation (broadly known as a cytokine).

The UK company Synairgen is delivering the drug directly to Covid-19 patients' lungs using a nebuliser. Interferon beta was one of the first DMTs for MS, available since the mid-1990s and delivered by injection (unlike nebulisers, as used in the study above).

Initial findings suggest that the treatment significantly reduced the odds of a patient in hospital developing severe disease, but larger clinical trials are now needed.  The double-blind trial involved 101 volunteers who had been admitted for treatment at nine UK hospitals for Covid-19 infections. There was also research in 2004 into interferon beta and SARS (another novel coronavirus).

According to the study, the risk of developing severe COVID-19 symptoms that required ventilation or caused death during the treatment period of 16 days was reduced by 79 percent for patients in the interferon group, compared to those who received placebo.

The company also reported that patients who received this drug were more than twice as likely to recover within the course of the treatment period compared to those receiving placebo. The measure of breathlessness was also “markedly reduced”.

Interestingly, the UK Recovery trial is now recruiting a trial for Low-dose Dexamethasone, another steroid which has also been used to treat MS, so watch this space.

What does this mean?

Both the drugs mentioned are connected to the inflammatory response and the immune system,  felt to be responsible for causing the damage of severe COVID-19 and in MS. From a scientific perspective, it is interesting and exciting to see the speed at which some of this research is progressing, with such impressive results. However this does not mean that any particular MS drug will be beneficial in treating COVID-19, and it’s important to remember these drugs do not stop you contracting COVID-19, rather it is for treating people who are severely unwell with the virus.

MS & COVID-19

COVID-19 infection is more likely to occur, and more likely to have serious consequences, in people with compromised immune systems. All MS disease-modifying therapies affect the immune system, to varying degrees.  Interferon beta 1a and 1b do not significantly increase the risk of systemic viral infections.

Research into MS and COVID-19 is ongoing.  More research is needed into whether people with MS are more vulnerable to contracting the virus, but it is not currently felt that MS alone increases your risk of developing COVID-19 or a more severe course of the disease .  This is felt to be influenced by whether you are taking steroids or DMTs which may be immunosuppressive and how the body reacts to COVID-19 if you are living with more advanced forms of MS.

Please consider joining a study gathering data so we can find out more https://platform.qmenta.com/covid19_ms_patient

Other anti-inflammatory strategies

As you will know from the Overcoming MS program, vitamin D plays an important role in modulating the immune and inflammation system so there have been discussions about vitamin D and it’s effect on preventing or treating COVID-19.  At present, there is some evidence to suggest that lower levels of vitamin D are associated with a more severe course of COVID-19, but further research is needed.  In the meantime, there is absolutely no reason to stop taking your OMS recommended vitamin D doses; it may very well prove to be even more important in the coming months, both for us and our friends and families.

Reviewed by Medical Advisor Dr Jonathan White. 

References:

1. https://pharma.nridigital.com/pharma_jun20/repurposing_drugs_covid-19
2. http://chemocare.com/chemotherapy/drug-info/dexamethasone.aspx
3. https://multiplesclerosisnewstoday.com/decadron-dexamethasone
4. https://www.recoverytrial.net/news/low-cost-dexamethasone-reduces-death-by-up-to-one-third-in-hospitalised-patients-with-severe-respiratory-complications-of-covid-19
5. https://www.synairgen.com/wp-content/uploads/2020/07/200720-Synairgen-announces-positive-results-from-trial-of-SNG001-in-hospitalised-COVID-19-patients.pdf
6. https://coronavirusexplained.ukri.org/en/article/cad0012/

In light of communications yesterday from UK Central Government, we wanted to share information with you to help your understanding about social distancing, a term you may have heard in the news. 

Here is the latest Government advice, issued on 16/3/2020

https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults

Please review this advice regularly, as it is being continually updated.

Here are the key points:

What is social distancing?

Social distancing outlines the steps you should take to reduce social interaction between people. This will help reduce the transmission of coronavirus (COVID-19). The advice will remain in place for some weeks. Everyone in the UK, is being advised by the Government to follow these measures as much as is pragmatic. (Non UK community - check Government advice from your own country for the latest local measures.)

• Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These include high temperature and/or new and continuous cough

• Avoid non-essential use of public transport, avoid rush hour, when possible

• Work from home, where possible

• Avoid large gatherings, and gatherings in smaller public spaces such as pubs, cinemas, restaurants, theatres, bars, clubs

• Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media

• Use telephone or online services to contact your GP or other essential services

• The government have also now advised against all but essential travel abroad

The advice is intended for people living in their own homes, with or without additional support from friends, family and carers; if you live in a residential care setting guidance is available. 

Stronger message for vulnerable groups

For those over 70, have an underlying health condition or are pregnant, it is strongly advised that you follow the above measures, and significantly limit face-to-face interaction with friends and family.

The UK Government advises those who are at increased risk of severe illness from coronavirus (COVID-19) to be particularly stringent in social distancing measures.

This group includes Multiple Sclerosis at no.7; full list below. 

1. aged 70 or older (regardless of medical conditions)

2. under 70 with an underlying health condition listed below (ie anyone instructed to get a flu jab as an adult each year on medical grounds)

3. chronic (long-term) respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis

4. chronic heart disease, such as heart failure

5. chronic kidney disease

6. chronic liver disease, such as hepatitis

7. chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy

8. diabetes

9. problems with your spleen – for example, sickle cell disease

10. a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets or chemotherapy

11. being seriously overweight

12. those who are pregnant

Strengthen your MS support networks

It is crucially important for the MS community to support and help each other through these difficult times.  Here, we offer some practical thoughts, not medical advice, which we hope may be useful:

Question whether something is critical or an emergency, and if not: 

• Work from home wherever possible. Set up a defined workstation, which has effective seating for good posture, take regular breaks from the screen, hold virtual meetings and interactions with co-workers. Be prepared to share responsibilities and to muck in to help departments function

• Meditate - look after your mental health, focus on positive thoughts of what you can do and what you have to appreciate

• Keep moving - in your home, garden and in the countryside (as long as you are social distancing). Enjoy the Spring sunshine and appreciate nature. The NHS offers some exercises here and on there are many videos on the OMS website here

• Spend time doing things you enjoy – this might include reading, cooking, other indoor hobbies or listening to the radio or watching TV programmes

• Use technology and stay connected - set up FaceTime gatherings, a WhatsApp group, Facebook group and talk regularly with friends, family and neighbours

• Social media - avoid distracting information but find MS communities online - OMS regularly posts on Twitter, Facebook, Instagram and LinkedIn. Join our conversations

• Eat healthily and drink water - for groceries, ask family, friends and neighbours to support you and use online services. If this is not possible, then the public sector, business, charities, and the general public are gearing up to help those advised to stay at home

• Join an OMS Circle and find people online locally who have MS. Share information about where to find groceries to support the plant-based diet, share recipes and support each other in times of need

• Be kind - to yourself, to others. People will have their own, different challenges. 

OMS cannot, and will not, offer any individualised advice about Covid-19, as it is not our place to do so, but will share pertinent information and help you understand the advice of your medical team or government. As always, please ensure that you only share information from reputable sources with others. 
We will try and share tips on how best you can follow the OMS programme and cope with the uncertainty.

For medical advice, please first ask your medical team, we have shared the latest advice from the MS Society in the UK on DMTs in this blog (13 March): 

https://overcomingms.org/latest/coronavirus-covid-19-update-13-march-2020

This blog was published at 6pm on 17 March 2020

I’d like to begin by thanking the many of you that took you time to support me in completing my survey on psychological support in multiple sclerosis as part of my PhD research. Based on the information you’ve provided on your previous experience of psychological support, as well as what you would like to see provided based on your own psychological needs, I’m currently using the information you provided from this to develop an online intervention to support people with MS in managing their mental health. I’m excited to share this with you all very soon. My survey will still be open for the next 4-6 weeks if anyone is still interested in joining us in this endeavor then please do hop on board and complete the survey here. 

In the meantime, we examined the responses to the questions related to experiences of COVID-19. I thought now would be an ideal time to share our findings given that some of the key findings noted related to the link between mental health, coping and overall impact of COVID-19 in people with MS.

Findings from questionnaire

A distinct difference was found between the reported experiences of those who stated a negative impact and those who reported neutral or positive impact.

Levels of MS related concern were higher amongst those who reported a negative impact. That is, those who report a negative COVID-19 impact also reported more concern related to things such as anxiety, loss, uncertainty and impact of MS on relationships and future life goals. Whilst we can’t determine whether it is the COVID-19 situation that has exacerbated these concerns in those who are having a more difficult time right now, or whether it is the fact that existing MS related concerns has lead to a more negative COVID-19 experience, what is clear is that, those who are going through a negative COVID-19 experience are those who are also more concerned about components of their MS that could impact their overall quality of life.

This is very disheartening given that over a third of those who took part in the survey at the time of analyzing the data were amongst those in this category.

Having hope

However, one of the most exciting findings for me was that having compared the experiences of those who reported a negative, neutral and positive Covid-19 impact it was clear that what distinguished those in the positive group as well as many in the neutral group was the use of helpful coping strategies to manage the negative consequences of the COVID-19 pandemic. It is our hope that sharing these strategies that are working for those who are faring well at this time with those who are struggling will help to provide a useful resource and hope for improvement in psychological well-being during a time when many are struggling.

Helpful coping strategies reported by those who have found COVID-19 to yield a neutral of positive impact generally fit into 2 categories that centre either on taking a more practical, problem focused approach, or taking a more thoughtful, emotion focused approach.

Those who reported using a practical and problem focused approach in coping with COVID-19 reported doing so by actively making use of the extra time that has come out of being in a state of lockdown such as engaging more in enjoyable hobbies, or even taking up new ones, spending more time with family at home doing activities that promote and nurture bonding, and actively making the decision to step back and use the time to look after themselves, both physically and psychological to allow any existing symptoms to ease up, especially fatigue.

The other helpful coping approach used by those who reported a neutral or positive impact related to thoughts and consequent emotions such as reflecting on the benefits and positives that have arisen as a result of the COVID-19 induced lockdown and using this to frame the situation in a more positive light and experience psychological growth as a result. Additionally, thoughts relating to accepting the situation also seemed to be linked to neutral and positive outcomes.

Understanding what is working well for people with MS during this stressful time can help to provide insight to those who are struggling at this time as to which approaches that might be worth embracing as a means to ease the present burdens and improve mental health.

For Véronique social-distancing is important as she lives with multiple sclerosis, having been diagnosed twenty years ago, aged 33. Social-distancing has been relatively easy as she lives in the hills, in a remote house in the beautiful Portuguese countryside. In addition to her husband, she lives with three dogs and one cat. 

Rachel Moorwood, PR Manager at Overcoming MS had a chat with Veronique via Google Hangouts last week during the COVID-19 restrictions:  

How do you feel about social-distancing?

I am originally from the countryside in northern France; I lived in a tiny village with only a handful of residents. I had one sister, who I wasn’t close to at the time and my two brothers, who played boys stuff together. So from an early age I was used to being alone, enjoyed my own company and loved reading. For me, physically distancing is not too difficult at all. 

Is there anything you would recommend for people to cope with social-distancing?

First, I think it’s important to stay connected with friends and family. We need to support each other. But I also believe that social-distancing gives us the opportunity to pause and be ‘bored’ without feeling guilty. Most people - me included - tend to focus on doing, being active, going places… But it’s important to stop, accept that it’s OK not to be busy all the time. Being ‘bored’ can help us to feel more grounded, more connected to our surroundings.  

Before the lockdown, I would get up, do yoga, go running, get ready, drive to a coworking space to work, and after work go to the gym or the pool. Now, I can’t do that. But it’s good! When I have nothing to do, I sit outside and listen to the silence. I enjoy just listening to Nature being busy - there are birds, bees and the wind in the trees. The more attention you pay, the more layers you notice. I’m also enjoying time for self-discovery and meditation.

I do follow the OMS diet, that’s a way of life, but even that I am simplifying. We eat what is available and now more than ever what is local. I do miss fresh grilled fish from the sea, but we have an abundance of local, fresh vegetables and fruit available. I am enjoying taking my time cooking OMS recipes from scratch which are healthy and delicious. 

I know people will have greater challenges too. But I hope isolation will give people time to stop, to reflect whether they live in a flat or in the countryside. There will be new sounds to listen to in town centres without the constant traffic and the air quality should be improved too. 

Anyone who knows you will know you are a fitness fanatic?  How has your exercise regime changed?

I will admit I miss the gym, swimming in the pool and my trainer. But I am still active every day. I enjoy walking the dogs in the countryside, I do yoga and HIIT. I cycle and sometimes help my husband in the garden. I’m really happy to see that there are lots of online classes available now so I also try to do some of these.

I had just started to teach yoga locally to build a network, but I’ve sadly had to shelve this for the moment. I can’t wait to start again when we are able.

Véronique is one of OMS’ facilitators and helps at events. She started yoga in 2000 when she was diagnosed with relapsing-remitting MS. Over the years, she studied different types of yoga with different teachers and qualified in Hatha Yoga and Yoga Therapy. Together with her husband, she created Taming the Walrus, which is dedicated to encouraging people with MS to practise yoga. 

https://overcomingms.org/about-us/facilitators/veronique-gauthier-simmons

Has your work been affected?

I'm fortunate that my full-time job as a learning designer is home-based so my salary continues. I am used to working remotely with a global education company and I am still able to do this successfully. I am currently working on developing a phone app to teach English and business skills. Our virtual team is global. I have colleagues in London, New York, Switzerland, Spain, Thailand, Poland and we all work from home.  Meetings face-to-face have been cancelled which is a shame as it’s always good to meet people in person but we are managing fine and our business is tech which is proving essential in modern society. 

Véronique is also keeping herself busy learning Portugese (adding to her German, French, English and Spanish language skills putting many of us to shame!)

She does not take medication for her MS, and has still managed to get hold of supplements to complement her OMS lifestyle choices. 

How does she stay connected?

As I live in the middle of nowhere I’ve been using online chat for a while - I use every platform going! I enjoy keeping in regular touch with friends. I do miss my parents who are in France especially as my mum, now 82, has Alzheimer’s.

I feel positive, lucky and well in general though. I hope people may take this unprecedented health crisis to free up time in their weekly lives, make time to talk and accept that it’s OK not to be busy all the time. My top tips are to stay connected with friends and family and use this time to pause, meditate and bring mindfulness into your life. 

I text some of my friends (in Portugal, Denmark and the UK) each morning to nudge them to meditate, so we know we are meditating together which I think is just a nice thing for us to do.

Has MS helped how you are handling your new normal?

Indeed, personally, the hardest part of coping with MS after diagnosis was the lack of certainties. Not knowing what is going to happen was really tough. So I had to learn to expect the unexpected. And not to look too far ahead in the future - there’s no point obsessing over best and worst case scenarios. I’m sure many people living with MS feel the same. So in a way, dealing with a chronic condition like MS has helped us deal with uncertainty and we get used to accepting each day. 

And what have you done to your arm?!

I fell over a couple of days ago while cycling and fell badly on my left elbow. I left it a few days before going to the doctor who put it in a sling to heal (it’s broken!). Not great timing but it’s all fine and it’s another adjustment I’m having to make! 

Overall this time out has made me realise how blessed I am. I would like to extend my best wishes to our OMS community; stay safe and well. And we know, more than most people, how important and brilliant our health workers are. 

For Portuguese news in English, Véronique recommends:

https://www.theportugalnews.com/

And for a reliable source of Government information:

https://www.rtp.pt/noticias/pais/a-evolucao-da-covid-19-em-portugal_i1213879

Overcoming MS focus on COVID is here

https://overcomingms.org/

Véronique is a yoga teacher and some of her free resources and experience are here:

https://vimeo.com/user30009423 and on the OMS site here: https://overcomingms.org/resources/exercise

Plus she also recommends these exercises for people with MS: https://www.msworkouts.com and http://www.themsgym.com/

For anyone interested in reading more widely about the practice of yoga, (perhaps while you have time), Véronique recommends the following:

• Stephen Cope, The Wisdom of Yoga

• B K S Iyengar, Light On Life

• Donna Farhi, Bringing Yoga to Life

• Judith Hanson Lasater, Living Your Yoga

Whether or not the current global Coronavirus outbreak is technically a “pandemic” or not is largely arbitrary, it has involved enough people in enough countries, and there is no doubt that it causes significant cause for concern.  This is a virus never before seen in humans, and therefore there is no herd immunity against it. It also appears to be extremely infective, and at latest count there are an estimated 84,000 cases with almost 3,000 deaths worldwide.

The symptoms of coronavirus to look out for:

• Cough

• High temperature

• Shortness of breath

But these symptoms do not necessarily mean you have the illness, the symptoms are similar to other more common conditions, such as cold and flu.

It must also be kept in perspective. Seasonal influenza (“the flu”) kills between 50,000 – 60,000 people globally each year, and gets nowhere near the same media coverage, let alone a stock market crash!  The flu is also potentially a new virus every winter, and whilst there is a vaccine, the evidence for its effectiveness is not always that promising. COVID-19 is in many ways simply another flu.  

So far, the epidemiological data tells us that this a condition with a rule of fifths:

• 4 in every 5 sufferers recover quickly with minimal to moderate symptoms only, requiring no treatment
• 1 in every 5 sufferers are more severely affected, requiring medical assessment and possible hospital care
• A further 1 in 5 of this 1 in 5 group become very unwell, requiring more intensive supportive treatment
• The current mortality risk is between 1 and 2 for every 100 people infected.

How to reduce risk 

The best general prevention strategy seems to be through simple hygiene measures:

• 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 immediately

• Wash your hands with soap and water frequently – use hand sanitiser gel if soap and water are not available

• Try to avoid close contact with people who are unwell

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

Like with influenza, we know that the elderly and people with other serious health conditions are at increased risk of complications and death from Coronavirus, so there is a natural anxiety amongst the MS community as to what Coronavirus might mean for us, especially when many are also taking immunosuppressive drugs.

There is obviously a degree of uncertainty with COVID-19 specifically, but if you apply the basic principles from what we already know about other infective diseases and those undergoing chemotherapy or taking MS treatments, the news is generally reassuring.

Changes to treatment

Doctors are very unlikely to recommend stopping your disease-modifying therapy (DMT) at present. The immunosuppression associated with DMTs is relatively mild and therefore most people with MS (pwMS) can combat infections relatively well. The exceptions are alemtuzumab (Lemtrada), and potentially cladribine (Mavenclad), during the early stages of treatment, when the lymphocyte (a type of white blood cell that fights viruses and bacteria) count is low.  Once the immune system has rebuilt itself, there should be no issue in dealing with infections.

Fingolimod (Gilenya)

Although fingolimod (Gilenya) causes a low lymphocyte count, they are simply trapped in lymph nodes rather than circulating in the blood.  Therefore, pwMS on fingolimod can generally combat viral infections, although they tend to have more frequent and possibly more severe infections. This also applies to the other drugs in the same class (siponimod, ponesimod, ozanimod).

Anti-CD20 therapies

The immune response to viruses whilst talking the anti-CD20 therapies (rituximab, ocrelizumab and ofatumumab) should also be almost normal, but may be slightly slower than in the general population.

Natalizumab (Tysabri)

In those taking natalizumab (Tysabri), there is a potential concern over COVID-19 and a brain infection called encephalitis.  This is similar to the infection PML, and due to the drug preventing the immune system from “patrolling” the brain. But, at present, we don’t know if this particular type of Coronavirus has that potential, and even if it does, it generally only happens in those who are severely immunocompromised.  If you are concerned, we would suggest discussing this with your MS team.  

Tecfidera (BG-12, dimethyl fumarate)

Tecfidera has only a mild immunosuppressive effect, so it is unlikely to cause a significant issue with COVID-19, unless your lymphocyte count is very low, e.g. less than 0.8 x 109/L.

Other DMTs

Teriflunomide (Aubagio), glatiramer acetate (Copaxone) and interferon beta (Betaferon, Avonex, Rebif, Plegridy) are not immunosuppressive and should not increase your risk of COVID-19.

As the situation now stands, the risk of COVID-19 infection to the general public, and hence pwMS is low, outside of certain areas (mainland China, South Korea, Iran and Italy). It would therefore not be routinely recommended to change your DMT or delay a planned infusion at this stage.

If however you are currently immunosuppressed, it is very important to be extremely vigilant about hygiene (handwashing, etc.) and to avoid travel to high-risk areas. 

The benefit of using a face mask to protect against COVID-19 is largely unknown, as this is a new pathogen to humans.  At present, it also appears the virus is spread by droplets, rather than being aerosolised, and therefore sits on surfaces rather in the air.  For that reason, rigorous hand hygiene is likely to be more effective at preventing spread. It is also very dependent on the quality of the mask you are wearing, as to whether it provides any meaningful protection.

Advice

For more information on the current situation in your area and for travel advice and restrictions, please refer to your local Public Health Authority and Government information sources.

• UK https://www.gov.uk/government/organisations/public-health-england
• The Netherlands https://www.rivm.nl/coronavirus/covid-19/vragen-antwoorden
• Germany https://www.bundesgesundheitsministerium.de/
• Italy http://www.salute.gov.it/nuovocoronavirus
• US https://www.cdc.gov/coronavirus/2019-ncov/index.html
• Canada https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/latest-travel-health-advice.html
• Australia https://www.health.gov.au/news/health-alerts/novel-coronavirus-2019-ncov-health-alert 
• New Zealand https://www.health.govt.nz/our-work/diseases-and-conditions/covid-19-novel-coronavirus 
• WHO https://www.who.int/emergencies/diseases/novel-coronavirus-2019/travel-advice
• EU https://www.ecdc.europa.eu/en/coronavirus 

Information correct 2 March 2020

PLEASE SEE BLOG FOR LATEST UPDATE - 13 March 2020

References:

https://www.worldometers.info/coronavirus/

https://multiple-sclerosis-research.org/2020/02/pandemic/

https://www.nhs.uk/conditions/coronavirus-covid-19/

The World Health Organization has made it clear that a period of social distancing or self-isolation is the best way to stop the spread of the coronavirus. It is vital that we follow this instruction, but it is important to protect our mental health while doing so. Loneliness is already a social health crisis and self-isolation can trigger deep feelings of loneliness or sadness. The process of isolation can also contribute towards anxiety, but there are plenty of ways that you can attempt to prevent these feelings and make the best of isolation. Just because you are physically distant from others does not mean you are alone.  

Here are some ideas to help you stay connected: 

Find a positive online community

Join an OMS Circle! It’s vital to keep up a healthy lifestyle while you are in self-isolation, so an OMS Circle will help encourage and support you to do that, while the OMS online forums are the perfect place to communicate with others who have MS and are going through the same experiences. 

Start regular video chats

There are so many video chat methods out there that it is worth doing some research online to read the reviews and see what is best for you (or by reading our article). They include Zoom, Houseparty, FaceTime, Skype, WhatsApp video calls and Google Hangouts. Face-to-face contact is important. It can be beneficial to see a loved one’s face, particularly if you are worrying about each other — seeing a smile can be reassuring. 

Video chats also give you the opportunity to organize group get togethers and group chats. Routines can also be beneficial for mental wellbeing, such as a daily lunch break with a friend or family member via a video call. These events can be added to the calendar and provide something to look forward to and get ready for. The dating world has even moved online during this period, with dating apps for those who are looking for love. 

Get the best from social media

Social media can be a brilliant way to stay connected with friends and family. There are groups which you can join that are supportive and encouraging and it can be a great distraction to see friends’ photos and anecdotes, helping friends to stay connected all over the world.

Others can find social media can trigger feelings of anxiety, making them worry more about the current coronavirus situation. Some people find themselves comparing their life to others in a negative way.  If you feel like this, take a break from social media for a while or limit yourself to a set time every day. 

Pick up the phone

With all the different ways of communicating online, a phone call can create a sense of authentic connection with a focus on tone of voice, pitch and volume. Some people might tend to stay on the telephone longer than a video call as they feel more comfortable and more at ease without a camera, less exposed and more intimate. And you don’t have to be video-ready! A phone call can cut through the chaos of social media and make the person’s voice the only focus. 

Stream a class

No being able to go to the gym or your regular fitness class can be frustrating. Fortunately, there is so much available online now, from aerobics classes to yoga. For a communal, interactive feeling, choose live-streamed workouts rather than pre-recorded classes.

There are also online classes such as cookery, music lessons or language classes. 

Organize an online social event

Facebook now has Watch Party so that users can watch public videos on Facebook in real time with a group of friends or family.

You can also use Zoom or Houseparty to organise online events such as a quiz, drinks parties, book groups and even a dinner party. Tabletop Simulator allows you to play traditional board games online in a group while Netflix Party means that you can watch a movie online with friends and family.

You could even organise a fundraiser for OMS - tips here.

Volunteer from home

During this time of isolation, helplines will be looking for volunteers so if you feel able to offer time and this can provide you with a sense of purpose as well as helping others to feel connected and less alone. 

Make the most out of solitude 

It’s important to stay connected with others, but if you’ve struggled to spend time alone in the past, take advantage of time in self-isolation to rest, relax, practice mindful meditation and start hobbies that you wouldn’t have otherwise enjoyed. A positive mindset will allow you to appreciate time alone as well as socialising with others.

Anyone working at home during the coronavirus (COVID-19) pandemic needs to make sure that their home working space is comfortable and appropriate for doing their job, so that their health is not compromised. It might be tempting to work at your kitchen counter on a bar stool or hunched over your laptop on a soft sofa, but this could cause long-term problems with posture and aches and pains for anyone, whether they have MS or not. However, people with MS may already be experiencing symptoms which compound this such as:

• Fatigue

• Vision problems

• Depression 

• Pain

• Cognitive symptoms

• Mobility problems

• Numbness and tingling

• Muscle spasms, stiffness and weakness

It’s worth taking extra care, because poor posture due to sitting in an incorrect position for a long period of time, or not being well balanced or supported, can lead to a range of further issues over time for those with MS, including:

• Pressure ulcers (sores) 

• Swallowing, talking and breathing problems (a bad sitting position can result in your chest being slumped and unable to expand)

• Difficulty in keeping your head upright (if your back is excessively curved in the chair it may be more difficult to lift your head up)

• Additional spasms or spasticity  

• Muscle shortening

• Loss of balance (if you are unsupported in your chair)

• Increased ataxia 

Fortunately, there are some inexpensive ways in which you can make your home working space more ergonomic. The purpose of any ergonomic design is to increase your comfort, avoid musculoskeletal disorders, prevent repetitive strain and reduce fatigue.

Adapt your laptop if you don’t have a desktop computer  

Laptops have bad ergonomics, so you shouldn’t use them long term. If you have to use a laptop, make sure that you use a laptop riser and plug in an external keyboard and wireless mouse. You should invest in a keyboard tray so that your keyboard sits below the desktop and you can angle it at a negative tilt. If your eyesight is compromised then your computer screen should be at least 17 inches wide. Some computer programs also allow you to change the amount of pressure you need to put on the keys. 

Top tip: use a pile of big books if you don't have a laptop riser

Adjust how you sit

Your pelvis needs to be in a neutral position, with weight spread equally through both your buttocks. Keep your hips, knees and ankles at 90° with your kneecaps facing forwards and a little apart. Use a foot stool if you are short. 

Change your posture frequently

If your job is busy, then it’s easy for the hours to fly by without moving your position which can lead to neck, shoulder and back pain. Consciously change your posture and position at your desk when you can.

Add a rolled towel for lumbar support

If you get lower back pain, roll a towel and place it between your chair and lower back.

Put your feet up

Putting your feet up while you work will increase circulation and stretch your legs — something you can do much more easily at home!

Try a standing desk

Your legs can get sore and stiff if you are sitting for long periods of time. Try using a desk that can rise to a standing position when you need it, giving you the flexibility to work sitting or standing. 

Top tip: some people use their ironing board as a standing desk or a kitchen counter. Or you can get a raiser to covert your table or desk. 

Take regular breaks

If you are in an office, you might naturally take more breaks — making rounds of teas and coffees for your work mates and walking to various meetings. At home, it can be easier to forget to take a break, or you might feel more self-conscious taking a break out of sight if a colleague can’t get hold of you when you step away from the screen for a moment.

Set an alarm on your mobile phone or smarth speaker to go off every 30 minutes to take a break for 3 to 5 minutes. Do some stretches, walk to the kitchen to get some more water to drink, take a few breaths of fresh air – these things will help keep your body healthy. 

Home exercise

Use your lunch break wisely! If you are at home you will have the opportunity to exercise and take a quick shower in your lunch hour. Follow the guidance set by your government during the coronavirus crisis. If allowed, you can exercise outside by going for a walk during your lunch break. If you need to stay inside you can take a look at the OMS stretches as part of our recovery plan — you can do some of them in your desk chair! 

Use an exercise ball

Our final tip is to replace your desk chair with an exercise ball for part of the day, if you are able. As you sit on the exercise ball, you will be actively balancing, so that your body forms the correct posture naturally, relieving any back strain you may have been experiencing.

With today’s technology, there is no reason why you can’t continue to work from home and enjoy the benefits that working from home can bring!