Is long-COVID a problem for me?

A proportion of people who had an apparently mild COVID-19 infection continue to suffer with persistent and cyclical symptoms, including chest pain and palpitations, shortness of breath, muscle and joint aches and pains, headaches, cognitive impairment (‘brain fog’) and fatigue. This is called ‘long-COVID’, and seems to be a multisystem disease that sometimes occurs after a mild acute illness. Some people struggling with these persistent symptoms refer to themselves as ‘long haulers’. The image below illustrates the range and complexity of symptoms reported by people with long-COVID.


Click figure for full size image

As a General Practitioner, I became aware of this problem in late Spring 2020, after a number of female patients presented with ongoing COVID-19 symptoms that impacted themselves, their families, and their ability to work. At the same time, people were publicising their problems through the media, and many individuals with ongoing problems described difficulties in getting help for their symptoms.1,2,3

I was concerned that this phenomenon of long-COVID was not being recognised as a condition that needed attention. I conducted a study4, interviewing people with persistent symptoms following coronavirus infection in Spring 2020. A summary of the findings (below) was shared with participants to check out the analysis and meaning of the data.


Click figure for full size image

Study participants were recruited using advertisements on social media. Out of 30 people interviewed, only 6 were male. This disparity in response got me thinking: is long-COVID affecting men less than women? Or are men more reluctant to come forward and take part in research? Perhaps men are affected by long-COVID but they are not seeking the help they need from the health service?

I spoke with Ashish Chaudhry, a general practitioner (GP) who has been affected by long-COVID to get his take on why men may not be coming forwards with symptoms or seeking help. Ashish reflected that the epidemiology of long-COVID is not known – there isn’t yet a code that GPs can use to record a diagnosis of long-COVID in a person’s records. As a result, we simply don’t know if women are more affected by ‘long-COVID’ than men. Perhaps men with persistent symptoms might be less likely to access healthcare – women are accustomed to seeking help, for example, participating in screening programmes – or if men feel there is a stigma is associated to seeking help with non-specific or poorly defined symptoms. Alternatively, a man presenting to a GP with chest pain or shortness of breath may be referred for investigations not linked with a COVID-19 infection. We already know that women with chest pain, which represents heart disease, are less likely to be investigated and managed appropriately than men.5

Ashish wonders whether men more than women might struggle with the identity of being ill, and whether fear of  job loss might lead men not to present to their GP with symptoms that may be due to long-COVID. If so, then what is needed? There needs to be further research to determine whether men are less affected by long-COVID than women, and we need to encourage men who think they have persistent symptoms following COVID-19 infection to seek help from the NHS.

References

  1. Harding L. “It feels endless”: four women struggling to recover from Covid-19. Guardian 2020 Jun 7 (https://www.theguardian.com/world/2020/jun/07/it-feels-endless-four-women-struggling-to-recover-from-covid-19-coronavirus-symptoms; accessed August 2020). 
  2. Garner P. Covid-19 and fatigue—a game of snakes and ladders. BMJ Opinion 2020 (https://blogs.bmj.com/bmj/2020/05/19/paul-garner-covid-19-and-fatigue-a-game-of-snakes-and-ladders/; accessed August 2020. 
  3. Campbell J. Fears over thousands of “long haul” Covid-19 sufferers. Scotsman 2020 (https://www.scotsman.com/regions/fears-over-thousands-long-haul-covid-19-sufferers-2884703; accessed August 2020).
  4. Kingstone T, Taylor AK, O’Donnell C, et al. “Finding the right GP’: a qualitative study of the experiences of people with Long-COVID. Not yet published. 
  5. British Heart Foundation. Women get half the number of heart attack treatments as men: New blood test diagnoses more women with heart attack but gender gap in treatment remains. ScienceDaily, 2019 (https://www.sciencedaily.com/releases/2019/10/191015115352.htm; accessed 7 October 2020). 
Comments (13) Add yours ↓
  1. Alastair Miller Consultant Physician Infectious Disease

    Thank you Carolyn for an informative and thought provoking blog. The preponderance of women patients (80%) mirrors very closely the preponderance of women with chronic fatigues syndrome/myalgic encephalitis (CFSME) after other viral infections (including SARS -1, the previous coronavirus pandemic). The cause for the higher incidence of CFSME amongst females remains unexplained as does the whole pathophysiology of the condition.

    It is clear that a proportion of those who are ill with Covid-19 will suffer significant end-organ damage, be it to lungs, heart, kidney or brain. However, it is almost certain that the vast majority of those with “Long Covid” are suffering from the post-viral CFSME that occurs after many viral infections such as glandular fever, viral hepatitis, coxsackie virus and SARS-1. As yet, no discernible difference has emerged in symptomatology or epidemiology so it is not at all surprising that it is more commonly found in females.

    Once end organ damage has been excluded by a thorough clinical history, physical examination and appropriate investigation, then it is reasonable to assume that a “Long Covid” patient has acquired CFSME as a result of their infection. Under those circumstances, it is reasonable to offer them the current evidence based and NICE approved therapeutic options of cognitive behaviour therapy (CBT) and graded exercise therapy (GET). Whilst this approach remains controversial, the use of such psychological and behavioural therapeutic interventions does not imply that any clinician believes that post viral syndromes are “all in the mind”. Indeed such approaches are commonly used in ameliorating symptoms in cancer and other chronic inflammatory conditions and nobody would suggest that they are “all in the mind”. The use of this approach merely accepts the reality that no pharmacological therapy is available and there is an evidence base suggesting benefit with very little downside from CBT and GET. It is important that these interventions are offered in a closely supervised manner by appropriately trained therapists.

    October 7, 2020 Reply
    • Carolyn Chew-Graham Professor of General Practice Research

      Thank you, Alastair, for your thoughtful comments. Our paper reporting the narratives of people with long-COVID has just been published.
      https://doi.org/10.3399/bjgpopen20X101143

      I do hope you enjoy reading it. I am working with Manchester CCGs to look at the best way of offering investigation, management and support to people with long-COVID.

      October 15, 2020 Reply
  2. Michael Kirby Professor

    All very good points.
    It may be that some men are suffering from testosterone deficiency which is impeding recovery. Worth checking a 9am testosterone in these men when they turn up.
    Watch out for the next issue of Trends which covers this issue!
    Testosterone may have a role in the events leading to progression of COVID-19 infection and preventing the cytokine storm.
    Suppression of ACE2 expression by inflammatory cytokines accompanied by the decrease of androgen and oestrogen in some ageing men may establish a negative correlation between ACE2 expression and
    COVID-19 mortality.
    It may also explain the persisting tiredness.
    Testosterone levels should be investigated in these men affected by COVID-19 because of the known adverse impact of testosterone deficiency on cardiovascular mortality and heart disease.

    October 8, 2020 Reply
    • Carolyn Chew-Graham Professor of General Practice Research

      many thanks for this comment – certainly something to discuss in my practice – but also with commissioners who are looking to set up ‘Long-COVID’ clinics.

      October 13, 2020 Reply
  3. Roger Kirby President RSM

    Great blog Carolyn – here is the link to the RSM Long COVID webinar at which both Carolyn and Alastair spoke: https://www.youtube.com/watch?v=tmzmx3LwEjY
    Do watch it. These issues are bound to run and run!

    October 8, 2020 Reply
  4. Roger Kirby Professor of Urology

    People suffering ‘long covid’ symptoms will be offered specialist help at clinics across England, the head of the NHS announced today.

    Respiratory consultants, physiotherapists, other specialists and GPs will all help assess, diagnose and treat thousands of sufferers who have reported symptoms ranging from breathlessness, chronic fatigue, “brain fog”, anxiety and stress.

    Increasing medical evidence and patient testimony is showing that a small but significant minority of people who contract Covid cannot shake off the effects of the virus months after initially falling ill. Some estimates suggest that 10% of Covid patients may still be experiencing symptoms more than three weeks after infection, and perhaps 60,000 people could be suffering from long covid symptoms after more than three months.

    Speaking at the NHS Providers conference today (Wednesday), NHS chief executive Sir Simon Stevens will announce that £10 million is be invested this year in additional local funding to help kick start and designate long covid clinics in every area across England, to complement existing primary, community and rehabilitation care.

    Sir Simon said new network will be a core element of a five-part package of measures to boost NHS support for long covid patients:

    New guidance commissioned by NHS England from NICE by the end of October on the medical ‘case definition’ of longcovid. This will include patients who have had Covid who may not have had a hospital admission or a previous positive test. It will be followed by evidence-based NICE clinical guidelines in November on the support that long covid patients should receive, enabling NHS doctors, therapists and staff to provide a clear and personalised treatment plan. This will include education materials for GPs and other health professionals to help them refer and signpost patients to the right support.
    The ‘Your Covid Recovery‘ – an online rehab service to provide personalised support to patients. Over 100,000 people have used the online hub since it launched in July, which gives people general information and advice on living with long Covid. Phase 2 of the digital platform being developed this Autumn by the University of Leicester will see people able to access a tailored rehabilitation plan. This will enable patients to set goals for their mental and physical health, provide peer to peer support through social community forums, offer an ‘ask the expert’ facility for patients to contact their local rehab service, and allow patients to be monitored by their local rehab teams to ensure that they are on track with their care.
    This service will be available to anyone suffering symptoms that are likely due to COVID-19, regardless of location or whether they have spent time in hospital. It is most likely that patients will access the service through their GP, but they could also be referred through another healthcare professional following assessment.
    Designated Long Covid clinics, as announced today. This will involve each part of the country designating expert one-stop services in line with an agreed national specification. Post-covid services will provide joined up care for physical and mental health, with patients having access to:
    – A physical assessment, which will include diagnostic testing, to identify any potential chronic health issues.
    – A cognitive assessment, to assess any potential memory, attention, and concentration problems.
    – A psychological assessment, to see if someone is suffering potentially from depression, anxiety, PTSD, or another mental health condition.
    Patients could also then be referred from designated clinics into specialist lung disease services, sleep clinics, cardiac services, rehabilitation services, or signposted into IAPT and other mental health services.
    National Institute for Health Research (NIHR) funded research on long Covid which is working with 10,000 patients to better understand the condition and refine appropriate treatment.
    The NHS’s support will be overseen by a new NHS England Long Covid taskforce which will include long covid patients, medical specialists and researchers.

    October 9, 2020 Reply
  5. Culley Carson Distinguished Professor of Urology

    All excellent points and need further studies. Would be interesting to do a prospective study beginning when patients present to their GP for COVID symptoms and are tested positive. It has been well documented that men are as much as twice as likely as women to get COVID-19 and more likely to die from the infection. The reasons are well summarized by Mike Kirby. In the US, the COVID continues to increase and there are more reports of long COVID, but studies have not elucidated the actual syndrome nor its most likely sufferers.

    I think that this issue is ripe for a multi center and perhaps multinational study of the nature of long COVID, its likely sufferers, gender, race, age and comorbidity associations and duration of symptoms.

    October 11, 2020 Reply
    • Carolyn CG Professor of General Practice Research

      Thank you for your comment. I absolutely agree that there should be a study of people suffering from long-COVID in primary care – to define epidemiology and to develop and evaluate evidence-based interventions.
      One of the difficulties general practice faces is that we do not have access to covid testing and are informed of results of patients’ test down the line.

      October 13, 2020 Reply
  6. Roger Kirby President RSM

    A recent report has confirmed that a widespread hidden impact of coronavirus on thousands of patients who are suffering from the “long Covid” phenomenon and struggling to get help from the NHS.
    The work by National Institute for Health Research reveals the challenge for the health service in being able to meet the needs of patients suffering the after-effects of the Covid-19 virus.
    Some patients are still reporting problems seven months on from their infection. Among the “roller coaster of symptoms” they face include organ damage to their heart or lungs, problems with their kidneys, livers or skin as well as breathlessness, chronic fatigue, “brain fog”. Dr Elaine Maxwell, review author, said: “We know from a number of surveys both in the UK and across the world, that a significant number of people experience ongoing effects after a Covid-19 infection.
    “The list of symptoms is huge and covers every part of the body and brain. We heard from people who are still unable to work, study or care for dependents several months after their initial infection.”

    October 15, 2020 Reply
  7. Michael Kirby Professor

    Spotted this on Medscape:

    The condition commonly called ‘long COVID’ may not be one syndrome but possibly up to four different syndromes, according to a new review.

    The finding comes from a dynamic themed review of available scientific evidence published by the National Institute for Health Research (NIHR).

    The paper, Living with COVID19 draws on the latest expert consensus and published evidence, as well as the experience of patients.
    It formed the first output from the NIHR Centre for Engagement and Dissemination (NIHR CED) which is working towards a real-time knowledge base in what is an emerging field.

    It is estimated that as many as 60,000 people in the UK may have long COVID.

    Long COVID ‘May Be a Catch All Term’
    The review found clear consistencies for a wide range of recurring symptoms among people who had been hospitalised because of COVID-19, as well as those who had COVID-19 in the community.

    Those who experienced ongoing COVID had problems with the respiratory system, the brain, cardiovascular system and heart, kidneys, the gut, the liver, and even skin.

    The authors said that such a wide range of symptoms created diagnostic uncertainty.

    “We believe that the term ‘long COVID’ is being used as a catch-all for more than one syndrome, possibly up to four,” said Dr Elaine Maxwell, the review’s author.

    She told a briefing hosted by the Science Media Centre (SMC) that while some patients experience “classic post-critical illness symptoms”, others reported “fatigue and brain fog in a way that’s consistent with post viral fatigue syndrome”.
    A third group experienced “permanent organ damage caused by the virus”, while another significant group “describe a rollercoaster of symptoms that move around the body and do not steadily progress towards recovery”.

    “We believe that the lack of distinction between these syndromes may explain the challenges people are having in being believed, and accessing services,” said Dr Maxwell.

    Patients who were unable to have their symptoms addressed and treated in the absence of an agreed definition of ongoing COVID, particularly those who were not hospitalised and never formerly diagnosed, may in turn go on to encounter a psychological impact, the review said.

    Ongoing COVID ‘Can Last for Months’
    Another notable feature of ongoing COVID was a wide spectrum in how long patients reported feeling unwell.

    “People asking for help and advice now are being told that they should recover within 2 to 3 weeks,” said Dr Maxwell, “but we heard from people who are still unable to work, study, or care for dependents 7 months after their initial infection.”

    As part of the study, the NIHR CED held a focus group with 14 members of the Long COVID Facebook group, whose members include post-hospitalised and non-hospitalised people.

    One of them, Joanna House, a climate change academic at the University of Bristol, developed COVID-19 in March after she and her partner, Ash, helped an elderly neighbour who had fallen in his home, and who was infected with the SARS-CoV-2 virus.
    After 7 months, both Jo and Ash continue to experience ongoing COVID symptoms, including breathlessness, fatigue, tachycardia, and ‘brain fog’.

    They told the researchers that their experience of seeking help from health professionals had been mixed and at times frustrating because they had not been hospitalised and had not been tested at the time.
    So, yes we need to see this as an urgent area for research funding & application

    October 15, 2020 Reply
  8. Simon Wessely Professor

    It is a reasonable supposition that Long Covid consists of more than one syndrome, although i think it will take rather more than the numbers who took part in the NIHR Rapid Review to establish that.Tim Spector’s Symptom App certainly doesn’t lack for numbers, and he has reported the commonest symptoms after COVID, starting not surprisingly with chronic fatigue, breathlessness etc. Slightly more surprising is the finding that only 2% of confirmed COVID-19 cases were still symptomatic at three months- that seems rather too low, as it is lower than the background rate of chronic fatigue in the community at any one time – which we showed many years ago has a point prevalence of around 10%, incidentally replicated only this week . So the finding using the symptom app could be because of the somewhat improbable situation that having chronic fatigue before protects you from Long Covid, or improves your prognosis afterwards. Rather more likely is that there is some non random loss to follow up.

    At the moment there are several key epidemiological questions that must be answered before we can start to unpick all this. First, as Alastair says, what is the evidence for persistent pathological changes in for example the heart and lungs As ever, this can only be answered by controlled studies to control for the possibility that such abnormalities are more frequent in COVID survivors – since elsewhere we often find that healthy people often carry rather more abnormalities that we suspected before we started looking. Second, is there true viral persistence? this has huge implications in all sorts of ways. Post viral fatigue syndromes are what they say on the tin – post viral. So before we can classify this as post viral we need to make sure this really is post viral. And then we have to find out if this is a specific syndrome or part of the what can often be a prolonged convalescence associated with any infective episode, especially if severe, and certainly not just viral. Another possibility would be something more specific – here we must remember the example of Epstein Barr virus, the causative agent for glandular fever. My colleague Professor Peter White established beyond any doubt that EBV has a particular propensity to cause more frequent and longer lasting post viral fatigue syndromes than other common viruses, a finding that has been replicated but never explained. is this the case with SARS-COV-2? we wont know yet, but now that we have passed the somewhat arbitrary but still useful milestone of six months post exposure for a substantial number of people infected at the height of the spring epidemic, this should not be difficult to find out. Another issue would be whether or not SARS-COV-2, which is clearly neurotropic, leads to a higher frequency of neuropsychiatric disorders either directly via this property, or alternatively indirectly as for some it will be a severe life threatening experience with known and predictable psychiatric consequences such as, but not restricted to, PTSD. These two possible mechanisms will also interact to a considerable degree

    All of this sounds very complex, but it isn’t really. For once we have a fairly precise knowledge of onset – we know fairly well when this virus hit our shores, and although an awful lot of people weren’t tested, sufficient were for the purposes of separating out the various possibilities i have outlined. It will also be useful to compare those who tested positive with those who were never tested but now have antibodies, – his team’s analysis suggest that these two groups are very similar in symptoms. This country now has an excellent large follow up study underway (PHOSP-C), which will address the outcomes of those who were admitted to hospital during the peak of the pandemic, although we still lack the essential companion study, an equal in depth examination of those who were never hospitalised. These community and primary care cases must be studied with equal rigour as a matter of urgency.

    And finally, it can be anticipated that as in so much else, there will be a balance between host related factors and pathogen related factors – as has been seen many times before. Already Tim Spector’s paper suggests that previous asthma is a risk factor, but there will be others. One strength we have in this country is the quality of our primary care records, and at last we also now have the capability to use this for record linkage on a large scale – i am thinking of the Ben Goldacre game changing Open Safely study. https://unherd.com/thepost/finally-a-way-to-analyse-nhs-data-from-17-million-people/

    So i would suggest that although at the moment much about Long Covid, including the questions of numbers, medium term outcomes, risk factors and so on, is still unclear, it should not be too long before some of the epidemiological and nosological questions raised by both Alastair and Carolyn in the excellent webinar that led to their contributions above, will be clarified.

    Simon Wessely, Immediate Past President, Royal Society of Medicine

    October 16, 2020 Reply
  9. Nicola Stingelin Ethicist

    The importance of all the matters raised in this blog is increasing over time; many readers are surely sharing my experience of trying to support a long-COVID sufferer.

    There seem to be a bundle of aspects of ‘long COVID’ that require attention in order to work towards improving our understanding, and thus the design of prevention, mitigation & treatment strategies :

    – relevance of existing psychiatric diagnosis as independent predisposing / risk factor for COVID-19?
    – risk factors for survivors of COVID-19 developing psychiatric sequelae (looking at all determinants and dimensions of physical and mental health and how they interact)?
    – Covid-19 physiological impacts [transient, long term, permanent?] on the central nervous system?

    Recent publications* and discussions illustrate the complexity and enrich these discussions.

    An important point requiring more attention is the need to effectively and efficiently integrate patient engagement in all these strains of work – who, how, when – a particular challenge in a emergency pandemic.

    See the RS report on long COVID (https://royalsociety.org/-/media/policy/projects/set-c/set-c-long-covid.pdf).

    * For instance “Bidirectional associations between COVID-19 and psychiatric disorder: retrospective cohort studies of 62 354 COVID-19 cases in the USA” https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(20)30462-4/fulltext

    November 10, 2020 Reply

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