Coronavirus & M.E. Guidance
COVID-19 Report by Louise Sargent
M.E. Support has been inundated with messages about the Coronavirus pandemic. There is a plethora of information in the public domain, although this summary highlights useful resources and M.E. related links. Please follow your local health authority for the most up-to-date information specific to your location. If you require individual guidance or advice, please consult your doctor who can take this information into consideration.
This report does not provide medical advice and it is intended for informational purposes only. Please bookmark this page to view regular updates, or link to the page directly to prevent outdated information from being shared. If this website or any other service provided through M.E. Support has been of use to you, please consider Helping to support and continue this important work.
Coronavirus & M.E.
It appears that people who are older, those with weakened immune systems and people who have pre-existing conditions (including chronic neurological conditions) are more vulnerable to the virus. Myalgic Encephalomyelitis is officially recognised as a neurological disorder; please read Myalgic Encephalomyelitis Diagnosis, Treatment & Prognosis for further details. The Royal College of Obstetricians and Gynaecologists have prepared Information for pregnant women and their families regarding COVID-19. It is imperative that everyone follow guidelines issued by the World Health Organization, Department of Health & Social Care and National Health Service. On 21 September, the Joint Biosecurity Centre recommended that the UK's COVID-19 Alert Level should move from level 3 (COVID-19 epidemic is in general circulation) to level 4 (COVID-19 epidemic is in general circulation, transmission is high or rising exponentially). The Office for National Statistics provides the latest data and analysis on Coronavirus in the UK.
Please try to stay calm and focus on your self-management skills, as outlined in A Self-Help Guide to Managing Myalgic Encephalomyelitis. The ME Association has produced a wide range of Leaflets about COVID-19, along with information about post-viral fatigue (PVF) and Post-viral Fatigue Syndrome (PVFS) following the infection. The 25% M.E. Group has produced some downloadable Coronavirus Leaflets specifically for those with severe M.E. The Association of British Neurologists has published Guidance on COVID-19 for people with neurological conditions, their doctors and carers. The Bateman Horne Center (USA) has published Useful medical information when treating COVID-19 in patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and severe fibromyalgia (FM).
On 29 March, a Letter was sent to major supermarket chains and the government from M.E. charities and the All Party Parliamentary Group on ME, highlighting the immediate and pressing challenge faced by people with M.E. in accessing food and essential supplies. Action for M.E. are asking you to share your experience to help the UK Government understand the impact of the lockdown and Coronavirus situation on people with M.E. The You + M.E. Registry and Biobank is a collection of patient-reported data and biosamples from people living with Myalgic Encephalomyelitis. A questionnaire has been included so that they can track the impact of COVID-19 on the health of people with pre-existing M.E.
Forward ME has published an Open Letter addressing concerns and highlighting best practice with regards to rehabilitation of people who are experiencing post-viral fatigue after COVID-19. Carol Monaghan MP, who chairs the All Party Parliamentary Group on M.E. at Westminster, and is Deputy Chair of Forward ME, has tabled an Early Day Motion (EDM) that covers issues relating to people who are not recovering from COVID-19.
I recommend watching Infectious Disease Expert Explains How Coronavirus Spreads featuring Dr Ian Lipkin. In addition, Dark Sun: Reflections on the Coronavirus as it Heads For Town is the first of a series of articles written by Cort Johnson. The Globe and Mail has reported that Scientists warn COVID-19 could lead to neurological complications in some patients. Patients who have had Coronavirus "could be at higher risk of developing Myalgic Encephalomyelitis", researchers at the University of Leicester have warned. David Tuller and Steven Lubet discuss Chronic fatigue syndrome may hold keys to understanding post-Covid syndrome in STAT news. COVID-19 studies in relation to M.E./CFS have been announced by JOGO Health, the Open Medicine Foundation and the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Melbourne journalist Sue Green has described how the Long-term effects of virus shine a light on chronic fatigue sufferers. Which? has published a mindful article about Coronavirus: how to clean your home effectively. The ME Action Network are regularly updating their worldwide COVID-19 Resources for People with ME.
The World Health Organization has changed its advice on Face Masks, saying they should be worn in public to help stop the spread of Coronavirus. Face coverings in enclosed public spaces are now compulsory in England. There are exemptions for children under 11 and those with disabilities or certain health conditions, such as respiratory or cognitive impairments. The UK Government has provided guidance on Face coverings: when to wear one, exemptions, and how to make your own.
The Coronavirus Act 2020 has received Royal Assent and has come into force. The provisions of the Coronavirus Act, which are time-limited for two years, provide emergency legislative measures to address the Coronavirus disease outbreak.
The UK Government has issued COVID-19: residential care, supported living and home care guidance. Carers UK and Carers Trust have made a Joint Statement (PDF file) regarding the Coronavirus. This covers an overview of the current advice for people who are providing unpaid care.
The Advisory, Conciliation and Arbitration Service has published Coronavirus: advice for employers and employees. The Budget has announced a Package of Measures to support public services, individuals and businesses affected by Covid-19.
Local authority education departments and schools should be signposting parents to resources, services and support whilst children who are registered pupils are unable to attend school. BBC Bitesize offers lots of resources that are clearly divided into subject and age categories, and the broadcaster has promised to offer lots more in the coming days. Ofcom has provided advice on how to Stay Connected during the coronavirus pandemic.
Covid Mutual Aid UK is a group of volunteers supporting local community groups organising mutual aid throughout the COVID-19 outbreak in the UK. They write, "We focus on providing resources and connecting people to their nearest local groups, willing volunteers and those in need." In addition, Money Matters consists of links and information about finance and welfare, along with other useful services in the UK.
You might find yourself feeling worried about the spread of Coronavirus and its impact on you and your loved ones. These feelings are normal but it is important to acknowledge them, whilst also reminding each other to look after our physical and mental health. The government has published Guidance for the public on the mental health and wellbeing aspects of coronavirus (COVID-19). Mind provides advice on Coronavirus and your wellbeing, and the Samaritans are available 24 hours a day. If you are looking for an online community, Action for M.E. has three forums where you can access peer support and friendship.
Please be aware of online shopping scams and Coronavirus-themed phishing emails. I recommend that you follow advice from the National Fraud Intelligence Bureau and Get Safe Online. Misleading health advice is also being shared online; please read WHO Myth busters for further details.
NHS Volunteer Responders has been set up to support the NHS and the care sector during the COVID-19 outbreak. Volunteers must be 18 or over, and fit and well with no symptoms. Those in higher-risk groups (including those over 70, those who are pregnant or with underlying medical conditions) will be able to offer support by telephone.
The National Emergencies Trust, in partnership with the British Red Cross, has launched a Fundraising Appeal, to raise and distribute funds to support communities made most vulnerable by the Coronavirus outbreak.
Clap For Our Our Carers is a movement created as a gesture of appreciation for NHS staff and other key workers during the pandemic. The campaign took place every Thursday evening at 20:00 between 26 March and 28 May 2020. An annual Clap For Our Carers Day is planned for the last Thursday of March each year.
Frequently Asked Questions (UK)
- What is shielding?
Shielding is for people who are extremely vulnerable. This includes people being treated for specific cancers, anyone who has recently undergone an organ transplant and those with severe respiratory conditions like cystic fibrosis. It also includes some people who take certain drug treatments that can suppress the immune system - leaving the body less likely to able to fight the virus.
Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19
- How do I tell the difference between my M.E. and a viral infection?
M.E. symptoms often mirror those of the flu and other viruses. Listen to your body. You will know if you have a new, severe viral infection. If you suspect that you may have Coronavirus, please follow the official guidance and direct any concerns to your doctor.
Coronavirus (COVID-19) Symptoms and what to do
- Will COVID-19 lead to M.E. in some people?
Many people experience post-viral fatigue and other complications after an infection, but these are usually short-lived and resolve within a few days or weeks. However, for some people these complications last much longer and may have a significant impact on the quality of their life. In fact, an infection is commonly reported as a trigger for the development of M.E. As we are still in the middle of the pandemic and much is yet unknown, it is hard to predict the extent of this increase in post-viral fatigue and M.E.
Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following coronavirus infection
Long covid: diagnosis, management, prognosis
Self-Isolation: Welcome to Our World
Reflections on the Coronavirus pandemic by M.E. Support Ambassador, Rochelle Hanslow.
We can’t get away from it right now: “Coronavirus” or “COVID-19” is quite literally everywhere. It has created uncharted territory for so many of us and most of us will have to change our day-to-day lives in order to do what is right for us and our families. The term “self-isolation” has come out to play and there are so many who have taken to social media to gripe about weeks of no social activity, weeks of not being able to go out and work or go to the gym, weeks where they are, unknowingly, coming into the world of those of us with chronic illnesses. It is a scary time for all of us: no one really knows when this will end; however, the difference between this and chronic illness is that there will be a day in the coming months where the general public will be able to start getting back to a sense of “normality”, whereas chronic illness is here to stay, there is no end.
With this in mind I invite you – the person of full health, the person who has possibly in the past commented and passed judgement on those with chronic illness, the person who thinks our lives are easy and how fabulous it must be to be housebound every day of your life – to open your eyes and see that your life has now stopped involuntarily because of an illness that you didn’t ask for. Yes, I understand it is a very different illness and hopefully in this case, no one reading this is actually suffering the symptoms of it, but the effects of it are just the same: you’ve lost your work life or it has changed significantly, you have lost your social life, you’ve lost the ability to be able to go to the gym, your favourite restaurant, the hairdresser’s, the nail salon. You can’t exercise as often as you’d like to and for some of you, anxiety may be kicking in hard and fast, you may be feeling like a caged animal. You crave nothing more than your “normal life” and already you are frustrated that you can’t have it.
We “Spoonies” deal with this every day: the constant feeling of loss and grieving a life we miss terribly while trying to do all we can with the life we now have as well as dealing with the symptoms our illnesses throw at us every day. There is a positive to this though: we are also proficient in self-quarantine and able to give you all some advice and tips to build your resilience to handle the next few weeks of being at home.
Self-Care Is a Must
This, for me, has to be the first point as it is crucial to any other part of coping with the trying times that will come in the next few weeks. You must find time to build your resilience and this can only be done if you decide to not be too hard on yourself, not expect too much from yourself each day and realise you are important. Self-care comes in many shapes and forms, whether it is a 15-minute face mask, time to indulge in a good book, doing some baking, relaxing in a bath, listening to your favourite music or watching a good movie. Whatever it is you like to do to chill out and whatever activity makes you happy, do that. I know it’s difficult to get time to yourself if you have a family around right now but even 10 minutes by yourself could be all the difference between you coping and you going into a complete meltdown.
Write It Down
Mental Health is really important, especially in times like this, as those who don’t usually suffer with anxiety may start feeling it right now. A lot of negative emotions are going to come to the surface, you’re angry, annoyed, frustrated and it’s not good to carry those types of emotions around, especially when you are within the same walls. Now is a good time to write down how you feel in the moment: it gets the emotion out and allows you to make the raw emotion known and then allows you to start rationalising it and processing it. It also means you can come back to it later and start trying to work through it, or even just have it there for the future in case the same issue comes back. It doesn’t have to be complicated or time-consuming, it can be as simple as writing a note on your phone.
Make a Future Plan
In times like these it is hard to see things getting better and to think of the positives in our lives. Unlike chronic illness, there is going to be an end date to this difficult time and a sense of “normal life” will ensue, so look forward and plan for that. Many of you may have had holidays rescheduled recently and other events you were looking forward to cancelled or postponed. Add them back into your calendar; you have countdown apps that can be used for really exciting events on your phone or go old-school and creative and make a “Dream Board” with lots of positive messages for the coming days and goals you want to achieve once things are safe to do so.
Spend Quality Time Together
This is really a great opportunity to finally slow down, turn off the TV, tablets and laptops and re-connect with your family, your significant other, your children, whoever you are in your home with right now, or even yourself. It’s a time to get back to basics of board games with your family or even with your partner, card games, a picnic in the living room, building a fort even – get back to childhood! Listen to music and dance in your kitchen or on your bed; just let yourself be happy in the moment. Some may say it’s silly but in times like these you do whatever you can to feel good and I guarantee it’s moments like these that you will always remember. This also applies to those who are at home on their own or with just their animal companions!
Just Do It!
We’re all guilty of saying “I just don’t have the time to do it” about something in our lives, whether it’s decorating the house, clearing out cupboards, organising paperwork or even finally picking up that new language course you bought last year and haven’t used yet! Now is a time to do it. Be productive. Don’t let this time completely take away your focus. Learn new skills: there are so many online course companies who have great deals on right now. Centre of Excellence is providing all their courses for just £29 with code LEARNATHOME14 and other companies have great deals on too.
Exercise Your Mind and Body
This one is one of caution in terms of it being a rule for the chronically ill. It’s not always easy for us to exercise daily: our symptoms vary in intensity day to day and on one day we may be able to do light exercise, but not on another. Yoga, Tai-chi, Pilates –these are all great for body and mind and if you do have some mobility issues or joint issues these may help to ease the strain of being in the house. If you are someone who has the ability to be a lot more active then you have programs such as Yoga Burn, which gives you the strengthening and elongating effects of Yoga but the burn of a HIIT workout, or there is Jazzercise, where you can currently get 60 days’ free trial with code 60DAYSFREE at checkout. There are, of course, lots of different videos on YouTube that give you hints, tips and even full workouts you can do at your own pace and for your own difficulty level. There are apps like Headspace and Calm that give you help with mindfulness and help with meditation and quietening your mind which, in a time like this, with all the added stress, can really help to give you balance and focus.
Community and Communications
We are all missing people right now and for some of you it may be really difficult not seeing friends and family that you usually see on a regular basis. In chronic illness terms, this is something we are used to: we often get isolated by friends and family as we can’t make gatherings and it can be hard to keep up communications. We are fortunate that there are ample messaging services that are free and allow video calls with them too. Facebook Messenger, WhatsApp, Google Hangouts, Skype and FaceTime – these are all great ways to keep you connected with friends and family and let you join in celebrations like birthdays, meaning the family can still see each other while complying with the safety measures put in place. There are a lot of communities online; for example, the community M.E. Support Facebook Page where people can tell their stories and ask questions and support each other. In this time, whether you are classed as high risk or not, it is good to know we are all together in it.
In these unprecedented times, we are all feeling pretty unsure of the future and we are finding ourselves in situations that we never thought about until now. Some of you may be realising that you have been taking certain things and people for granted; you may now be seeing how lucky you really are to be in a country where normally you can just go out and go to a supermarket without worry, without war and famine and fear. There are a few things I’d like you all to keep in mind for now and after we are able to start getting back to our lives:
There are a lot of small businesses, organisations and charities that need your help now and most certainly will after this; please support them in any way you can, whether it be donations, sharing their posts on social media, buying something from their store or where possible, giving a monthly contribution to them. Please support independent bookstores and record stores during and after this time; Hive.co.uk allows you to check your local area for books from independent stores and they can send them out to you. Organisations like M.E. Support need help all year round, as Louise relies on Donations and her own limited funds to keep the website and the support she gives going.
Please remember when the more “able” of you are allowed to go back to your normal, everyday lives, that there will still be those who are living the life of someone on lockdown every day of their lives. I hope this experience changes people’s thought for the better, that they can realise how you can lose everything in an instant thanks to something so very out of your control, but that one thing can control you and your life.
Stay safe and remember that the whole world is in this fight together.