(PVF) and Post-Viral Fatigue Syndrome (PVFS) Following Coronavirus Infection

MEA INFORMATION ON Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following coronavirus infection

May 2020 Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following coronavirus infection

INTRODUCTION

We are starting to receive We are also receiving reports reports about previously from people with ME/CFS healthy people who have had (myalgic encephalomyelitis/ (or probably had) coronavirus chronic fatigue syndrome) infection and have not been who have had this infection able to return to their normal and now have a significant level of health and energy levels exacerbation of their ME/CFS symptoms - especially a further in the weeks following the onset We are now expecting to see reduction in energy levels. of symptoms. These reports are a number of new cases of ME/ largely from people who have The ME Association has a CFS that follow coronavirus managed at home and not had lot of experience in dealing infection fatigue. This is why a more serious infection that with people who develop we have produced some required hospital admission. prolonged and debilitating guidance on how we feel that Some reports are from health fatigue (sometimes with other convalescence and good professionals. It seems likely that symptoms as well) following basic management of post some of them are experiencing a viral infection – as well as infection fatigue can lessen what is called post viral fatigue people with ME/CFS who the chances of this turning (PVF), or a post viral fatigue relapse following another into a more permanent and syndrome (PVFS). infection. debilitating illness.

BACKGROUND

WHAT IS POST VIRAL FATIGUE However, in some cases, a full and pains, and generally (PVF) AND POST-VIRAL FATIGUE return to normal health takes feel unwell, when they have SYNDROME (PVFS)? months rather than weeks. an acute infection is the Some degree of post-viral Additional symptoms may also production of chemicals fatigue (PVF) or debility is a develop, where the term post- called cytokines by the body’s fairly common occurrence viral fatigue syndrome (PVFS) immune system. These immune after any type of viral infection. may be a more appropriate system chemicals form part diagnosis. of the front line attack on Fortunately, in most cases, this any viral infection. And it is is short lived and there is a The situation with persisting interesting to note that in steady return to normal health fatigue following coronavirus people who develop serious over a period of a few weeks. infection appears to be rather respiratory complications from more complicated than what coronavirus infection, this happens with other viral may be due to an overactive illnesses. It could also be more immune response involving serious - as fatigue and lack of what is being termed a energy are turning out to be a ‘cytokine surge’. very characteristic symptom of When fatigue and flu-like coronavirus infection. symptoms persist for a longer The precise explanation for period of time once the acute what causes post-infection/ infection is over, as they do viral fatigue remains uncertain. in ME/CFS, there is research But one of the reasons why evidence to indicate that what people have fatigue, loss is a perfectly normal immune of energy, muscular aches system response to the acute

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BACKGROUND (cont.) WHAT ARE THE SYMPTOMS OF PVF AND PVFS?

infection has not returned to ACTIVITY INDUCED FATIGUE normal. As the name post-viral fatigue It is also possible that, as indicates, the main symptom is happens with ME/CFS, there is fatigue, or a failure to return to a problem with the way that normal energy levels. energy production is taking In practical terms this means place at a cellular level in no longer being able to carry structures called mitochondria. out a normal range of physical We are still on a very steep activities in the home, at work learning curve when it or school, or anywhere else. comes to understanding how In terms of severity this can the coronavirus behaves. range from a relatively mild which human body responds to However, there is no evidence impairment to a really quite and recovers from an infective to indicate that it persists like severe functional impairment. illness. hepatitis C infection or HIV. A useful comparison here COGNITIVE DYSFUNCTION So the continuing fatigue is trying to operate a radio does not appear to be due Just as energy is required with a battery that no longer to a persisting viral infection. for physical activity, it is also functions properly. The radio Consequently, people who required for mental activity. may work for short periods of have continuing fatigue, but So in a similar way to easily time but then starts to fail quite no other coronavirus symptoms, running out of energy when quickly. After a rest it will work are no longer infective to doing a physical task, some again - but only for another others in our current state of people cannot cope with short period. knowledge. longer periods of mental In a similar manner, people activity and start to lose While most people with post- with PVF find they can carry concentration and their infection fatigue will improve ability to process and retrieve and return to normal health, out short periods of physical information. Short-term good management during the and/or mental activity but (working) memory may also be very early stage is an important then have to stop and rest and affected. factor in trying to help any ‘recharge their batteries’. They natural recovery process take are no longer able to sustain PVFS AND POSSIBLE place. And patient evidence normal levels of physical PROGRESSION TO ME/CFS also indicates that good initial activity and find anything that When the symptoms discussed management of post-infection involves using a large amount above persist, and are fatigue lessens the chances of of energy in a short period of accompanied by other flu like this turning into an ME/CFS-like time, such as going for a run, is symptoms, it may be more illness. no longer possible. appropriate to diagnose a SLEEP DISTURBANCE post-viral fatigue syndrome Some form of sleep disturbance (PVFS). often accompanies PVF. If the symptoms persist for more During the actual infection, than two to three months, and shortly afterwards, this and continue to cause a may involve sleeping for significant degree of functional much longer than usual - as impairment that is preventing well as wanting to sleep for a return to education, periods during the day. This is employment or other key known as hypersomnia and is activities, a diagnosis of ME/ a natural part of the way in CFS should also be considered.

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SYMPTOMS MANAGEMENT OF PVF AND PVFS

CONVALESCENCE not exceeding what you feel comfortable doing, stopping The most important aspect of an activity when you are management of post infection starting to feel more fatigued, fatigue involves good old and not carrying on with a task fashioned convalescence. when you are not able to do so. In practice, this means taking Finding the right balance on things easy, and having plenty an individual basis between of rest and relaxation. This activity and rest is a process should be combined with gentle called pacing and many SYMPTOMS WHICH CAN FORM activity within your limitations, people find it helpful to PART OF A PVFS AND ARE ALSO having a good night’s sleep, alternate small flexible amounts SUGGESTIVE OF A DIAGNOSIS eating a healthy diet, avoiding of physical and mental OF ME/CFS INCLUDE: stressful situations, and not activities with a longer period returning to work, school or n Alcohol intolerance of rest/relaxation in between. domestic duties until you are n Feeling wobbly or unsteady well again. Physical activities could n include things like household Headaches of new onset Some people find that adding tasks and going for a short walk n Difficulty in sustaining in approaches like meditation – when you feel ready to do so. an upright posture for long or yoga can help with Mental activities could include periods – known as orthostatic relaxation. Others do not. social activities with people intolerance Overall progress can be very you can still be in contact with, n Muscular aches and pains variable with some people reading, listening to the radio, making a steady improvement n Sore throats and tender watching some TV, or doing back to normal health. Others glands a small amount of computer follow a less predictable work. n Problems with temperature pattern with good days and Do try to limit screen time on control bad days. computers, phones and TV, n Post exertional malaise/ Doing too much on a good and avoid using electronic symptom exacerbation day will often lead to an devices to catch up on your n The MEA has an information exacerbation of fatigue and normal work! any other symptoms the leaflet providing more Having established what is following day. This characteristic guidance on the early and a safe baseline of physical delay in symptom exacerbation accurate diagnosis of ME/CFS and mental activity that is is known as post-exertional HERE. not exacerbating symptoms, malaise (PEM). As already the next step is to gradually noted, where this persists for try and increase the amount more than two to three months you are doing – whilst sticking it should certainly raise the to the rule of not exceeding possibility of a diagnosis of ME/ limitations and living within CFS. what is called your ‘energy ACTIVITY MANAGEMENT envelope’. Resting and relaxing are both Activity management needs essential components of any to be carried out in a very convalescence. As energy is flexible manner. So any required for both physical and increase in activity levels need mental activity, it’s important to be gradual and within your to make sure that you are physical and mental limitations.

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MANAGEMENT OF PVF AND PVFS

etc), you must speak to your GP about how this should be managed. NUTRITION Some people will lose a significant amount of weight during a serious acute infection. This type of weight loss may need to be built up that you have plenty of good again if you are not overweight quality sleep, possibly including before being ill. a daytime nap if you need Any kind of vigorous, sporting Try to stick to a healthy one, is a key part of good or prolonged physical activity balanced diet with plenty of management. should be given a complete fresh fruit and vegetables, There are a number of simple miss until you have fully possibly with small frequent self-help strategies that can recovered and remained well meals if you find this easier. for a period of time. improve sleep quality: Make sure your fluid intake is n There is clearly quite a lot adequate. It’s probably better Relax before going to bed of trial and error involved in to avoid alcohol, or cut right by having a warm bath or getting the balance right down and abstain, especially listening to a relaxation CD. between activity and rest if alcohol is making you feel n Avoid caffeine-containing and great care needs to be worse. drinks – coffee, cola, tea taken to make sure that you If your appetite is still poor, – in the evening. Caffeine are only doing what you are or you need to put on some interferes with the natural comfortable with. You cannot weight again, ask for help from process of going to sleep. Try a exercise your way out of PVF or a dietitian on foods that are warm milky drink instead. PVFS! worth trying. n Avoid heavy meals and MENTAL WELL BEING SLEEP alcohol shortly before going Looking after your mental and to bed. Alcohol may help you As already noted, having an emotional health at this time to get off to sleep but it can increased sleep requirement is another important part of disrupt sleep during the night. (hypersomnia) is an important management. In particular, part of the body’s natural n Try to establish a routine for this should include avoiding healing process during, and getting up and going to bed stressful situations wherever sometimes following, an acute at roughly the same time each possible. infection. day that also accommodates Not surprisingly, having PVF any increased sleep So whilst going bed and requirements. or PVFS, along with all the staying there day and night is restrictions that this imposes not the solution, making sure n Keep the bedroom as a on what you are able do, can quiet, peaceful and relaxing make people feel fed up, place for going to sleep – not frustrated and sometimes even too hot or too cold and not a anxious or depressed. place for watching TV or doing If you are feeling anxious, or computer work. your mood is obviously low, n If you don’t have increased and you are feeling depressed sleep requirements, or the (with tearfulness, loss of interest need to sleep for excessive in activities, loss of self - esteem periods has reduced, try to

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MANAGEMENT OF PVF AND PVFS

have eight or nine hours solid and is essential for bone and uninterrupted sleep each night muscle health - so taking a daily 10 microgram vitamin The MEA has an information D supplement is a sensible leaflet covering all aspects of precaution. sleep management in more detail HERE. Do talk to your GP or pharmacist if you require help with a specific WORK AND EDUCATION symptom such as muscle aches The simple message here is to and pains. switch off from anything to do The MEA has information with work and do not go back leaflets providing detailed to work until you are fit to do Information from the Citizens information on the drug and so. Advice Bureau on Statutory non drug management of Sick Pay This is especially important if orthostatic intolerance, pain your job involves a significant There are other state benefits and sleep disturbance. amount of hard physical from the DWP, including activity or high levels of mental Universal Credit, that you stress. may be entitled to during WHEN TO CHECK the coronavirus epidemic Do keep in touch with your WITH YOUR GP and lockdown. The MEA employer or education provider has produced a guide to - as there may be a number of Although a face-to-face benefits that might help you options to explore once you consultation with your GP may to navigate the benefit system start to improve and reach a be difficult to arrange, most and other guides to specific point where a return to work or GPs are happy to speak to types of benefit that may be school/college looks possible. their patients on the phone or needed in the longer term if by a video link at the moment. This could involve doing some your health does not improve. work from home, or having a If your post-infectious fatigue is part time or flexible return to DRUG TREATMENTS continuing beyond four weeks, normal activities at school/ Finally, it’s worth noting that and is not improving, it’s still college or duties in the there are no drug treatments worth speaking to your GP to workplace. or supplements for treating keep him/her appraised of the situation - even though there FINANCES PVF or PVFS. And there is no value in taking products like is no specific drug treatment. If you are employed, and iron supplements (which are You may also need help from a entitled to state or other unnecessary and can even GP when it comes to sick pay sickness benefits, you will need be harmful) and high doses and benefit applications. to discuss sick pay, including of vitamin C or any other what is called statutory sick vitamins. However, if you are pay, with your employer and not having a healthy balanced obtain a fit note (aka a sick diet it would be worth taking a note) from your GP, or other multivitamin supplement. health professional who can confirm that you are unable As many people are no longer to return to work. A fit note going outside in the sunshine, will inform your employer that or only doing so for short the health professional has periods, the risk of vitamin confirmed that you are either D deficiency is increasing. ‘not fit for work’ or ‘may be fit Vitamin D is made in the for work’. body in response to sunshine

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RESEARCH INTO PVS AND PVFS

Several small epidemiological fatigue, pain and weakness studies have looked at the in muscles all over their body, development of fatigue and depression. syndromes following an acute Reference HERE. infection. As to how research into post An Australian research group infective fatigue and ME/CFS followed up 253 people with might be carried out after an glandular fever (Epstein acute coronavirus infection Barr virus infection) Q fever is over, this was discussed at (Coxiella burnetii) and The diagnosis of PVF and PVFS a recent meeting of the ME Ross River Fever (epidemic is made on your symptoms. Biobank Steering Group - as There is no diagnostic blood polyarthritis) in a rural part of there are epidemiologists at test. However, if you are Australia at regular intervals the London School of Hygiene having symptoms that are not over a period of 12 months. and Tropical Medicine, some consistent with post-infection Approximately 12% developed of whom are looking at Cv19 - fatigue, blood tests will be a post-infection syndrome and at the last CMRC (CFS/ME arranged to check for other involving fatigue, cognitive Research Collaborative) Board conditions that can cause dysfunction, musculoskeletal meeting. persisting fatigue (such as pain and mood disturbance. hypothyroidism/ low thyroid One possible route here would The predictability of function). be to make use of the baseline developing a post-infectious information on people who If you have any of the following fatigue syndrome was largely already have clinical data and symptoms, which are not part determined by the severity of blood samples stored at the UK of PVF or PVFS, you must speak the triggering infection and Biobank but did not have PVF, to your GP: not by any demographic or PVFS or ME/CFS at the time of psychological factors, or the n Continuing fever or periodic enrolment, and then go on to type of infection that triggered spikes of fever develop prolonged fatigue, or the symptoms. n Persisting cough, shortness of a fatigue syndrome following breath or respiratory symptoms Reference HERE. Cv19 infection. n Weight loss During an outbreak of SARS We also need to look at how the (Severe Acute Respiratory immune system is responding, n Feeling depressed Syndrome - another especially the levels of various n If symptoms are still present coronavirus infection) in cytokines, in people are not after two to three months, and Toronto during 2002 and 2003, recovering and have post- are still having a significant 273 people were diagnosed infectious fatigue. The MEA impact on daily living, with the infection, of whom Ramsay Research Fund would consideration will have to be 44 died. After the outbreak be very happy to consider given as to whether a PVFS ended, researchers at the any research proposals to has progressed into ME/CFS. University of Toronto, studied 22 investigate immune system As with PVF and PVFS, this is a people, mostly health workers, status in coronavirus infection. diagnosis based on symptoms. who had on-going health FURTHER INFORMATION There is no diagnostic blood problems that prevented them test for ME/CFS. from returning to work. Article on coronavirus fatigue that appeared in the New n The MEA has an information They concluded that there was Scientist leaflet providing detailed a chronic post SARS infection guidance on the early and syndrome characterised MEA website information on accurate diagnosis of ME/CFS by persistent fatigue, non- coronavirus infection and ME/ HERE. restorative sleep, daytime CFS

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OTHER INFORMATION

THE ME ASSOCIATION: This information and guidance ME CONNECT n Provides information on M.E. is based and campaigns on issues such on patient as research, the NICE guideline, evidence We’re here to help NHS service provision and care collected n Provides support through over many our ME Connect helpline, ME years on the symptoms Essential members magazine and management of PVF Do you need to talk? and our website and social

and PVFS. The author has CALL media personal experience of a n Funds biomedical research PVFS following chickenpox 0844 576 5326 – including the UK ME/CFS infection, which was caught 10am-12noon Biobank which is managed by from a patient. No form 2pm-4pm, 7pm-9pm an expert team at the London of clinical trial research School of Hygiene and has been carried out every day of the year Tropical Medicine – through and published into the the Ramsay Research Fund management of PVF and n Is a member of the Forward ME PVFS – so this information Group of charities and patient and guidance is largely representatives that is chaired based on clinician and by the Countess of Mar, and the patient evidence. CFS/ME Research Collaborative, Dr Charles Shepherd chaired by Professor Stephen Holgate, which aims to raise Hon Medical Adviser, MEA the profile of M.E. and attract greater research investment

ME ASSOCIATION WORKING CORONAVIRUS AND ME/CFS ARRANGEMENTS We have a new MEA information leaflet We issued a statement to provide covering Coronavirus and ME/CFS which is information on all aspects of our work and updated weekly. This is available as a free the services we provide. Almost all key download on our website. activities are continuing as normal – the main change being that we have now closed Head Office in Buckingham and office staff are now working from home. The main impact here is that we will not be able to send out any paper literature, purple books, or merchandise from the office for the foreseeable future. ME Connect – the MEA telephone helpline – remains operational, seven days a week, for information and support. ME Association statement: The ME Association and Coronavirus: New working arrangements

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