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19 Feb 2021

Long Covid: what is it and what help is available?

What to do when COVID-19 symptoms won't go away

Some people are being affected by a condition known as 'long Covid', in which they continue to experience debilitating fatigue and other symptoms months after initially becoming ill.

According to the ONS, around one in five people who tested positive for COVID-19 had symptoms that lasted for five weeks or longer, and one in 10 people had symptoms that lasted for 12 weeks or more.

Some of those who fell ill early on in the pandemic are still experiencing severe ongoing symptoms nearly a year later.

The range of symptoms is vast and varied, but commonly includes fatigue, muscle pain or weakness, and brain fog. It's been likened to the experience of those with Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME).

The fight for recognition

In the early months of the pandemic, the condition was largely misunderstood and often outright dismissed.

It took months of campaigning by long Covid patients - or 'long-haulers' - to get long Covid on the agenda for medical attention, public awareness, and scientific research.

Thanks to these long-haulers, strides have been made, including the set up of dedicated long Covid clinics. But the help available is patchy and it's not always straightforward to get it.

Here, we look at what clinical and financial help is available, tips on managing long Covid symptoms at home, and advise on how you can support a loved one with long Covid.

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    What is long Covid?

    Long Covid has been somewhat confounding to medical experts, and there are still many unknowns about root causes, how prevalent it is, the most effective treatments, and exactly how long it might last.

    Broadly though, the term refers to either the continuation of COVID-19 symptoms for about four to 12 weeks after initial infection, or post-viral symptoms for people still suffering 12 weeks after being infected.

    The list of symptoms associated with the condition is extensive, but a recent study of nearly 4,000 people with long Covid symptoms found the most frequently reported were: fatigue, post-extertional malaise (worsening of symptoms after activity), and cognitive dysfunction - or brain fog.

    Others include, but aren't limited to:

    • Respiratory symptoms - such as breathlessness and coughing
    • Cardiovascular symptoms - chest tightness, pain and palpitations
    • Neurological symptoms - headaches, pins and needles, insomnia
    • Gastrointestinal symptoms - diarrhoea, nausea and reduced appetite
    • Psychological symptoms - depression, anxiety
    • Musculoskeletal symptoms - joint and muscle pain
    • Ear, nose and throat symptoms - tinnitus, earache, prolonged loss of/altered taste and smell

    People often experience multiple symptoms at once - the same study found that people with symptoms persisting for more than six months were still contending with about 13 symptoms on average.

    Relapses can be a frustrating part of the long Covid experience, with people experiencing peaks and troughs. Nearly half of the patients in the study had been unable to fully return to work after six months.

    Who tends to get long Covid?

    Whether someone develops long Covid or not doesn't seem to be linked to how ill they were with the virus initially - less than 10% in the study were actually hospitalised with COVID-19 at any point. Some were asymptomatic.

    Many didn't even get a positive test result, as testing wasn't widely available to the public early on in the pandemic.

    Long Covid affects a broad range of ages (including children) and many patients were previously fit and healthy. It seems to affect women more than men.

    Talking to your GP about long Covid

    If you or a loved one is suffering from symptoms you think might be long Covid, speak to your GP.

    There are now official clinical guidelines in the UK for managing the long-term effects of COVID-19, which means it should be easier to get a diagnosis and a management plan for your symptoms.

    However, these are still being worked on as more is discovered about the condition, and they're new - so not all doctors will be up to speed yet.

    In this case, it's ok to share information like NICE guidelines (evidence-based guidance for diagnosing and managing conditions) and research that's been done into Long Covid.

    Your GP may do some tests including a blood test, heart rate and blood pressure measurement, or a chest x-ray.

    They may then make a referral to one or more specialists if there are complications with specific conditions, or to a multidisciplinary long Covid clinic if this is available (more on this below).

    Keeping a symptom diary can be key, as this will help with tracking how different symptoms come and go or get worse or better. Try and identify the main symptoms causing you problems, and start with these.

    If you're not getting anywhere, don't be afraid to ask for a second opinion.

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    Specialist referrals

    People with long Covid are often referred to one or more specialists for further investigation and treatment of different symptoms.

    This may be to respiratory, cardiology, and neurology treatment, as well as rehabilitation-focused services, such as occupational therapy, physiotherapy and clinical psychology.

    For long Covid patients, the level of admin involved in juggling multiple appointments and specialists can be exhausting. Going for multiple tests and attending appointments often triggers fatigue and relapse of symptoms, creating a vicious cycle.

    Ways to help mitigate this could include:

    • Keeping a symptom diary
    • Asking for help with collating records of appointments, hospital letters, medication history and test results
    • If your GP surgery has a patient app, it may be possible to keep track of some information here
    • Request wheelchair assistance at the hospital prior to the appointment, to avoid having to walk around a lot when you get there

    Healthcare professionals - be it the GP, a specialist, or a rehabilitation service - should work with long Covid patients to figure out a plan for monitoring their condition. This should help to bring multiple facets of treatment under one plan for care.

    What about long Covid clinics?

    In December 2020, NHS England announced the launch of more than 70 Long Covid clinics, which will bring together doctors, nurses, physiotherapists and occupational therapists to offer both physical and psychological assessments.

    It is hoped that these clinics can offer a more holistic diagnostic picture of the condition, which is much needed because it can affect so many different systems in the body.

    Long Covid patients in England are starting to be referred to these clinics, but not all of them are open yet and some have had to stop accepting referrals due to overwhelming demand.

    Many are finding themselves facing long waiting lists or outside the catchment area. At the moment, it seems like a bit of a postcode lottery.

    People may also have to be sent for a series of pre-tests before accessing these clinics.

    Long Covid clinics are not yet available in Scotland, Wales, or Northern Ireland, and they are not available to children in England.

    Clearly, there is more to be done here. But it's worth checking if there is a service in your area, or asking when it might be available.

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    Managing long Covid at home

    For now, a big part of living with long Covid is finding ways to manage the condition at home. This can take some trial and error, and be a frustrating process.

    But, thanks to the shared knowledge of thousands of existing patients, there's some good information out there about things that might help.

    Health tracking devices

    In partnership with a medical professional, using a health tracking device can be helpful in terms of understanding what tends to trigger symptoms and monitoring progress.

    Many long Covid patients have been given heart-rate monitors or pulse oximeters (to measure blood oxygen levels) to monitor themselves at home and communicate this to their doctor between appointments.

    Similarly, fitness trackers can help monitor physical activity, although they are not medical devices.

    Mobility aids and pacing strategies

    Mobility aids - such as a wheelchair, walker or crutches - may be needed to help you get around more easily if your symptoms are severe.

    These can be offered by the NHS in the short term, or rented from private providers. You should be assessed to figure out what's the best option for you.

    If you are struggling with fatigue and low energy, some long-haulers told us they are finding that pacing strategies used for those with chronic fatigue can help with long Covid.

    This might include carefully planning your daily schedule so work or study, or any period of exertion, is broken up with a period of rest.

    Those who experience brain fog might benefit from tactics used by those with dyslexia, such as using mind maps or charts instead of writing notes, and breaking larger tasks down into smaller steps.

    When we asked what people with long Covid had found useful, they also mentioned this Homerton NHS guide, which has links to a variety of useful leaflets.

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    Long Covid support groups

    Many people suffering with long Covid have found online support groups helpful, both for learning more about the condition and sharing experiences with others. These groups were vital in campaigning for the recognition that long Covid is now getting.

    The 'Long Covid Support' group on Facebook - for people suffering with the condition and their relatives or friends - is one example of a wide community through which people have been able to share advice, and be informed of, or get involved in, research into long Covid.

    Some local NHS trusts are also offering virtual community support groups for long Covid.

    Long-haulers may be able to find a 'Covid buddy' through these groups - to share their experience and how they're feeling with someone who is also going through it.

    Taking part in long Covid research projects

    Research into long Covid is ongoing and a growing area, and you may wish to get involved in patient studies and surveys.

    This will hopefully help to improve our understanding of the condition and how to tackle it.

    Much of the research that has helped us build a picture of long Covid so far has been thanks to the participation of patients themselves.

    Taking part in research can also help connect people with long Covid to medical professionals and researchers and help them access new information on the condition or options for treatment.

    Often, opportunities will be publicised on social media through support groups, but GPs and community groups may also have information on how to get involved.

    Getting financial support

    According to the latest clinical guidelines, your healthcare professional should also be able to advise on how to get support from other sources including social care, housing and employment, and other financial advice.

    This should also include offering support in discussions with employers, schools or college about the possibility of returning to work or school.

    People who are unable to work because of long Covid symptoms may be able to apply for Personal Independence Payment (PIP), which is an allowance intended to help cover costs for those with a long-term health condition or disability.

    Some long Covid patients have reported being knocked back when applying for PIP the first time, as the condition isn't currently recognised as a disability, but many recommend appealing the decision.

    Find out more about the Personal Independence Payment (PIP)

    There are calls for long Covid to be recognised as an occupational disease too, which would mean frontline workers could receive compensation if they can't work because of the illness. This is something countries such as Belgium, France, Spain, Italy and Denmark have already done.

    Living with long Covid

    Francesca Lo Castro, Senior Policy Advisor at Which?

    It started with chilblains, which appeared on my fingers in March 2020 - as the extent of the crisis facing us was still unclear. Four weeks later, I developed a high temperature, quickly followed by a dry cough, chest pains, extreme fatigue and breathlessness. Then the migraines, pins and needles, conjunctivitis and vision problems set in.

    Being young and fit, I thought it was a matter of waiting it out for a week or two. Little did I know I'd spend the next six weeks in bed.

    Today, nearly a year later, I still have crippling fatigue, tachycardia, brain fog, myalgia and reduced mobility - I can't walk unaided for more than a few minutes and have to use a wheelchair or walker to go outside.

    I had to fight every step of the way for treatment and actively research my own condition, which was a challenge when I was feeling so unwell. Difficulty getting a COVID-19 test in the early days of the pandemic made it even harder to get recognition or referrals via the NHS.

    In the autumn, I was finally referred to the local rehab unit for physiotherapy and occupational therapy support, which was helpful in giving me breathing exercises and pacing techniques, and providing mobility aids.

    Pacing has been key to managing my recovery. Planning the week carefully and ensuring I get enough rest even after simple things such a phone call or getting dressed. I've had to change my work routine and now work reduced hours.

    I couldn't have managed without the help of my partner, who has essentially become a full-time live-in carer.

    Like others with long Covid, I experience relapses on a regular basis - I've come to accept this is not a linear recovery and for every step forward, I take three steps backwards. It is hard to ignore the toll this long-term condition is having on my mental health.

    To this day, my GP and I still find it hard to navigate the system and find the appropriate paths for referrals to investigate the symptoms I'm still experiencing.

    The uncertainty around my condition and recovery is disheartening, but for now I'm placing my hopes in a referral to the long-awaited local long Covid clinic, and increased awareness of and recognition for long Covid and the impact it has.

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    Supporting someone with long Covid

    If your friend, loved one or relative has long Covid, a good way to support them is to take the time to listen to their experience and what they need.

    Be understanding, patient and flexible, as their symptoms and levels of energy are likely to fluctuate.

    It can be really useful to accompany them to health appointments where possible, or look for ways to assist them with some of the admin involved in keeping track of health records and documents.

    Doing little things around the house can really help ease the burden, too. Changing the bed sheets, doing the laundry, and other everyday chores might leave someone with long Covid really fatigued, so find ways to step in that work for both of you. You might also offer to cook for them, or give a massage.

    If want to support someone with long Covid who you don't live with, you could help organise grocery deliveries, take over some meals they can freeze, or send a care package.

    Thoughtful gifts such as essential oils or pillow sprays might be appreciated to help with sleep. Or maybe a nice plant to brighten up their home. If you aren't sure, ask what they would find most helpful.

    Support for carers

    Long Covid has created a large group of unpaid de facto carers in partners, family members and friends of those with the condition.

    If you are caring for someone with long Covid, Carers UK and Carers Trust have information about support that unpaid carers may be able to access.

    Long Covid - more work to be done

    While it's encouraging to see some help starting to fall into place for those with long Covid, it can still be an uphill struggle to get it, and access to long Covid clinics is patchy and can include a long wait.

    It can be difficult to categorise and treat long Covid as a single condition, because symptoms can vary so widely from person to person and diagnosis can be tricky.

    The government has just announced a package of funding for four studies into the causes, symptoms and potential treatments for long Covid, which is welcome, but there's still a long way to go though to make sure there's enough support for all who need it, including fine-tuning the type of help that's required for each individual, as well as ensuring access to peripheral services for financial, employment and carer support.

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