Is there anything you can do to prepare for when you get COVID-19?
If you live in the UK you will have realised by now that the government plans to extend the tail of the SARS-CoV-2 epidemic to allow herd immunity to develop and at the same time protecting the most vulnerable people from getting COVID-19 by shielding. I have already said this strategy is dangerous and likely to be very leaky and will result in a lot of excess deaths.
What this means is that most of us (~80%) will become infected with SARS-CoV-2 at some point in the next 6-18 months and a significant proportion of us who are infected with the virus will get symptomatic disease or COVID-19. Therefore you should prepare yourself for getting COVID-19 and potentially severe COVID-19.
If you did get severe COVID-19 is there anything you can do to maximise your chances of surviving the infection and its immune complications? Preparing for a physiological stressor like COVID-19 is called prehabilitation. Prehabilitation is usually used for patients about to have major elective surgery with the objective of reducing the chances of operative and post-operative complications.
So if you have multiple sclerosis a COVID-19 prehabilitation programme makes sense. The following is a list of things I recommend you do:
- Smoker? If you are a smoker stop smoking. Smokers are 14 times more likely to die from COVID-19 than non-smokers. If this figure doesn’t scare you into stopping smoking nothing will.
- If you have comorbidities make sure their management is optimised.
- Hypertension? Check your blood pressure yourself. If it is high see your GP. If you have established hypertension make sure your medications have been adjusted to render you normotensive.
- Diabetic? Make sure you adhere to your diabetic medication and be extra-vigilant with your glucose monitoring. You may need to check in with your diabetic nurse or diabetologist for advice if your blood glucose levels are all over the place.
- Obese? Maybe it is time to get back on that diet and lose some weight?
- Alcohol misuse? If you drink more than the national guidelines is COVID-19 lockdown not time to try and cut back on your excessive drinking? If you have a drinking problem and need help please speak to your GP.
- Asthmatic? How is your asthma control? If you have bronchospasm you may need to get your meds/inhalers changed. You don’t want to have poorly controlled asthma when you get COVID-19.
- Sleep-deprived or sleep disorders? It is important you optimise the amount of sleep you are getting. Sleep deprivation is associated with multiple poor health outcomes. PwMS are more likely than the general population to have a sleep disorder. If you use sedatives to sleep you may want to try and wean these as they can affect respiratory function if and when you get COVID-19.
- Diet? This is a good time to review your diet to see if you can improve it. A healthy balanced diet with as little processed and ultra-processed food is what you should be aiming for.
- Exercise? There is no doubt that being deconditioned or unfit is a risk factor for a poor outcome from many serious diseases. If you are unfit and in lockdown, this would be an opportune time to start exercising with the aim of increasing your fitness. For those of you who are mobile, I have suggested the couch-to-5 programme in the past. If you are not mobile there are upper body exercises that you can do. Ideally, an exercise programme should be personalised with a physiotherapist, but if this is not possible there are pragmatic ways of getting going on your own.
- Breathing exercises: A lot of clinicians are instructing the general population to start doing deep breathing exercises to increase the ventilation of the little-used parts of the lung. This can be done before or more importantly after you develop COVID-19. I would recommend watching the video below.
- Mental health: Anxiety and depression are stressors in themselves and will affect how your body responds to infection. It is important that if you are anxious and/or depressed you get this treated. Exercise, mindfulness (meditation) and cognitive behavioural therapy have all been shown to reduce anxiety and improve depression. These are things you can do yourself. I am aware that it may be hard to address depression and anxiety during the lockdown, but there are things you can do to help yourself; but, if you think you need help can please reach out to your general practitioner and/or MS team.
- Advanced directives / Living wills: It is important to prepare for things in advance. If you did get severe COVID-19 and needed to go to ITU, possibly be ventilated and receive advanced life support. Is that what you would want? If it is not, make sure this is documented formally with your general practitioner and is included in your medical records. Also, let your family know what your wishes are. It may be a good time to update your will and instructions for your family in the event of you getting severe COVID-19 and passing away. You may want to prepare a folder summarising your medical condition, including your advanced directive, with all the necessary contact details of your next of kin. If you do get COVID-19 and are admitted to the hospital. Also, make a list of things you will need to take to hospital in the event of you getting COVID-19; please don’t forget your mobile charger. Please remember visitors are not allowed for COVID-19 patients so having a functioning mobile phone is an important way of keeping in contact with your family and friends.
Are there things I have left off this list? If you have MS and have already had COVID-19 is there anything you can advise your fellow patients about what they should be doing to prepare for when they get COVID-19? I am particularly interested in hearing about your personal hospital experiences.
I will also load this post on the COVID-19 section of MS-Selfie.
We should be doing those things, not just now.
If 80% of us are going to get it over the next 18 months I take it those of us who were supposed to be starting Orevus haven’t got a cat in hell’s chance of that then?
Would it be up to individual neuros of is it a blanket NHS ban?
Precisely my thoughts. No more HSCT, campath or ocrevus until a vaccine is out it seems.
Unless if you wanted to move to the Faroe Islands perhaps….
Individual neurologists; I am still offering ocrelizumab and oral cladribine. I think alemtuzumab and HSCT are much riskier. We can bridge with natalizumab.
We need to treat active MS we can’t not manage our patients for the next 6, 12, 18 or 24 months.
Well that is good news, I thought it was a blanket ban…
Phone call with neuro next week instead of face-to-face so I will have GIVE ME THE OCREVUS NOWwritten on my notepad along with questions to ask.
If he says no, who do I speak to do you know?
thanks
If you live in the UK you will have realised by now that the government plans to extend the tail of the SARS-CoV-2 epidemic to allow herd immunity to develop and at the same time protecting the most vulnerable people from getting COVID-19 by shielding.
This is not clear to me at all from what I’ve heard. But then, I only listen to BBC Radio 4.
Certainly not to doomsday prophets.
If they were adopting the other strategy they would be testing, testing, testing. I can tell that one HCP I know, who developed a non-specific dry cough, has been denied testing because they didn’t have a temperature and was told to keep on working.
How many people have had a false negative or inconclusive result, but definitely had Covid-19? No statistics for that scenario. Maybe, the tests only give a positive at a specific time during the disease course. Who knows? No one had heard of it before December
We know that about 25% of patients who have SARS-CoV-2 in their lungs have a negative throat and nose swab on admission. There are lots of false negatives.
If patients have SARS-CoV-2 in their lungs wouldn’t they be symptomatic? I would think a chest x-ray would show opacities and a bronchial lavage would test positive. No need for a upper respiratory sample when it is now lower respiratory.
You may want to add: if not pregnant, delay trying for a baby?
If pregnant, read this: https://www.rcog.org.uk/globalassets/documents/guidelines/2020-04-09-coronavirus-covid-19-infection-in-pregnancy.pdf
*I have already said this strategy is dangerous and likely to be very leaky and will result in a lot of excess deaths.*
What would you have done differently? The Government were criticised for being slow in introducing the lockdown and now are being criticised for extending the lockdown. The Government have a Chief Medical Officer and a Chief Scientific Advisor, but other experts are queuing up to get their 15 minutes of fame.
I would do what the South Koreans and Chinese are doing and not rely on herd immunity.
Recommendable reading: The Rules of Contagion by Adam Kucharski.
Also useful for priming awareness of ideas and rumour that snowball through the Internet.
There are an awful lot of people, some biased, some conflicted, some poorly informed, some well-meaning, some malevolent, some idle, some panicking, etc. etc. who are preading their own current mindsets or states of mind on the Internet.
I’m being very careful not to read conjecture at the moment. Truth is, no one knows what is going to happen, how the pandemic is going to play out.
The truth is the pandemic is playing out already and we have a pretty good idea of what is going to happen based on the Chinese, South Korean, Japanese, Singapore, Iranian and Italian experiences. It is the gift of rich governments to choose between the Chinese/South Korean/Singapore model or the Iranian/Italian model.
Vitamin D appears to have some influence over disease course, so don’t hide in the dark, try to get some sunshine (but don’t get sunburn). Connect with your local MSNTC barochamber because HDOT has been shown to be an effective treatment for CoVID-19. The whole idea of ‘flattening the curve’ was to ensure ventilator services weren’t exhausted, but half of people put on a ventilator die anyway, so you probably don’t want to go on a ventilator. https://www.ihausa.org/Hyperbaric_oxygen_therapy_in_the_treatment_ofCOVID-19_Severe_Cases.pdf
Good point I will add this to the list.
Remember that the UVB in sunshine only reaches the ground when the sun is high in the sky. So sun exposure before about 11:00 and after about 14:00 does little good. Only UVB, not sunlight, starts the chemical process that leads to the formation of vitamin d.
If you cannot get out, or there is no sun take a vitamin d3 supplement at about 5000IU a day unless you are significantly above or below average weight, then adjust the dose by weight.
Well said. I’d like to highlight obesity / weight loss because this is one of the comorbidities in many deaths in younger people .obese people do poorly on ventilators
Losing weight is easier said than done and is one of the social determinants of health. If you are poor and food insecure you tend to eat cheap processed and ultraprocessed foods that are responsible for obesity.
very true but may be behavioral modification like intermittent fasting or mindful eating can help, at least by not gaining weight, especially at this time when we are locked in and hangry 🙂
Nice new article
The need to connect: Acute social isolation causes neural craving responses similar to hunger.
https://www.biorxiv.org/content/10.1101/2020.03.25.006643v1.full.pdf
Might lack of Vitamin D be a part of the increased problems with COVID for BAME people? It seems to me that it makes sense to recommend that we become Vit D replete along with the other worthy tips. The science might not be prefect for this, but personally, I think it’s good enough. BAME people have significantly low levels of Vit D and are significantly over-represented in mortality data. There is as yet no explanation for this tragic phenomenon, but lack of Vitamin D is plausible. Vitamin D, cheap and available might make a difference. Might is good enough.
Good luck everyone!
Hello, thank you for all your very helpful info during this challenging time.
I’ve had 4 infusions of Ocrevus, due for my 5th in May. Not only does Ocrevus bring and keep my CD19 at 0 – they don’t repopulate in-between infusions. But it has also caused my IgM & IgG levels to be at low levels. From what I’m understanding this doesn’t cause me to be more susceptible to “catching COVID19” but I would have a harder time fighting it correct? Any thoughts??
I will be talking to my neuro re this and my May infusion and if I’m basically “kicking my immune system even further to the curb” if I get my infusion.
Thank you!!
had my barts tysabri infusion this week, moved to the dental hospital
on arrival i was asked to dispose of my gloves and remove my mask…. without being given replacement ones… note – i had to travel home without them..
what the fuck… talk about irresponsible – if i get COVID from this appointment then i wont be happy..
Perhaps someone here with common sense – would 1) pre-warn patients to bring extra gloves/ masks 2) provide them to patients who are at higher risk than the average.
i am tired and annoyed and just amazed at how these kind of things happen. guess ill be the bad person for speaking out….
My sister has to come to the dental hospital at The Royal London for an infusion (she has IBD) on Friday. Can I ask what were the exact procedures you had to go through in terms of entering and exiting and the duration of the visit? She’s planning to bring a mask and I wouldn’t want her to have to bin it when she gets there and she’s left with nothing! If she needs to bring a spare or put her mask on when she gets inside then at least she’ll be prewarned. I’d be grateful if you’d be able to outine what you needed to do? Thanks!
What about cannabis smoking and how it can cause inflammation in the lungs. Is this a risk for pwMS who smoke it? as it could make Covid-19 symptoms worse.
I would classify smoking cannabis as smoking. Not sure if the damage is cigarette tobacco-specific.
There was an article in the Daily Mail that made me think about it:
‘Smoking marijuana – even just occasionally – could increase the risk of suffering severe complications from coronavirus, doctors warn.’
https://www.dailymail.co.uk/health/article-8219145/Smoking-pot-just-occasionally-increase-risk-suffering-severe-COVID-19-complications.html
Thank you Prof G for this very useful information . I do however think that the video for breathing exercises could be improved upon. As a physiotherapist I alway teach my patients to breath in through the nose and out through the mouth. The mucous membrane in the nose has an important function during respiration including filtering the air breathed in. The instructor does not give any guidance on rib expansion or using the diaphragm effectively during respiration and taking too many deep breaths consecutively will cause dizziness.
I do not think the demonstration of coughing technique is very helpful either. Sorry to be so negative but I have seen this video elsewhere and wasn’t impressed then!
Sally – if you have some spare time, as an experienced physio, please could you explain further in a step by step paragraph, how you would teach breathing exercises to your patients? I’m sure many of us would be most grateful for clear instruction so we can all do something positive during this difficult time. Take care everyone.
Delighted!
Start by sitting in a comfortable position- back supported, knees slightly bent.
You are going to localise your breathing to the three areas of the chest/lungs in turn.
Start by placing your hands on your upper chest with fingers touching your collar bones (clavicle) take two to three deep breaths, breath in through your nose and out through your mouth. Feel your upper chest (apical region) rise and fall as you breath in and out.
Next place your hands onto your lower ribs at the sides. If you find it difficult to use the palm of your hand, place the back of your hand against your ribs. Two – three more deep breaths – in through the nose, out through the mouth.
As you breath in feel your ribs expand outwards. If you apply a bit of pressure onto your ribs with your hands it will help you to expand this part of your chest.
Now place one hand into the soft area between the bottom of your ribs – as you breath in feel the soft part rise and descend on breathing out – again 2-3 breaths in through the nose and out through the mouth.
This is using your diaphragm efficiently.
If you begin to feel dizzy – take a rest in between each exercise and breath normally.
All of these exercises are designed to increase your lung capacity and use areas of the lung you may not use regularly except on physical exercise.
If you feel breathless it may help to stand and lean against a support onto your forearms – not gripping – a banister or work surface may be the right height and breath slowly and as deeply as you can.
If you have an underlying chronic chest disease e.g. COPD or asthma, you need to consult your respiratory physiotherapist for more detailed or specific advice.
Hope this helps?!
Many thanks for this Sally. Best wishes.
I wrote a long reply to this but after pressing submit an error message occurred. Do you know if it went through?
Thanks
Yes it did -sorry!!!
I posted it on MS-Selfie thank you.
Re breathing
This video has gone pretty viral (sorry) I think:
https://fullfact.org/health/viral-coronavirus-breathing-advice-needs-context/
Agree with Sally re mouth breathing.
Now is the time to try a yoga class (online of course) if you’ve never done one before. Breathing and breath control an important part of yoga practice. Am no expert, but recommend giving it a try.
The Guardian today discusses pollution being an issue connected to Covid-19 severe symptoms. It also mentions today, that the public wearing a DIY home made mask outside the home might help reduce infection rates..
I have had COVID-19 and reported how it affected me through the UK MS Register.
Also have Sleep Apnoea and use an APAP machine (similar to CPAP) so needed to manage both conditions.
I had a mild dry cough and was advised to continue using the machine unless my cough got worse.
My experiences included a burst eardrum with discharge of fluid and bouts of trigeminal neuralgia on the other side.
Are you on a DMT?
Have had SPMS for about ten years and never been on a DMT.