What is Long COVID?

In October 2020 the following definition of Post COVID-19 Syndrome was made:

“Signs and symptoms that develop during or following an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post-COVID-19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.” NICE, October 2020

Long COVID is very new and not much is known about it, which can make it hard for people to get care when they need it and for healthcare professionals to know how best to help people. To tackle this the National Institute for Clinical Excellence (NICE), the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP) worked together on the following guideline.

COVID, Me and My New Wheels

TyneHealth’s Medical Director Dr Susannah Thompson has spoken about her own experiences of Long COVID in a video monologue she wrote and performed for an open mic event earlier this year.

Susannah is passionate about support for those with Long COVID and championing the voice of the patient in shaping NHS plans and services around this condition. She is a GP, who used to love walking and swimming in the sea, but due to Long COVID is learning to rest and pace, and make the best of this new way of life.

  • COVID-19 Information

    TyneHealth are working with local partners across North Tyneside to keep residents up to date with the latest on COVID-19.

    Visit our main COVID-19 page below to find general COVID-19 information, guidance and support including details about the COVID-19 Vaccination Programme.

  • View Our COVID-19 Hub

Drawing of Long COVID Symptoms by Bruno Foret, borrowed from the Long Covid SOS website

#MyLongCOVID

We would like to create a supportive on-line community for North Tyneside residents on our website and through the @TyneHealth social media channels.

If Susannah’s story has inspired you, please do get in touch with us on Twitter, FaceBook or Instagram and follow her example by posting a video diary / vlog – or a recording involving music, art, poetry or any other creative medium – of your experiences with Long COVID using the hashtag #MyLongCOVID

We will be working with Susannah to provide regular updates about her new wheels; the challenges, misconceptions, insights and unexpected joys on her journey to recovery with Long COVID. Follow her on Twitter @DrLongCovid

Symptoms of Long COVID

It is important to note that Long COVID can affect people of any age, including children, and that some of the symptoms of Long COVID in children can be different to those found in adults.

There is not currently an agreed list of symptoms for Long COVID, however the most common symptom appears to be fatigue*. Other common Long COVID symptoms are listed below and can vary from individual to individual, as well as fluctuate and overlap over time.

  • fatigue*
  • shortness of breath
  • chest pain or tightness
  • problems with memory and concentration (“brain fog”)
  • difficulty sleeping (insomnia)
  • heart palpitations
  • dizziness, feeling faint
  • pins and needles, numbness
  • joint and muscle pains
  • depression and anxiety
  • tinnitus, earaches
  • feeling sick, diarrhoea, stomach aches, loss of appetite, weight loss
  • intermittent temperature, cough, headaches, sore throat
  • change or loss of sense of smell/taste
*Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 – 48 hours after activity and lasting for days even weeks.

Online Resources for Long COVID

In addition to clinical support provided by healthcare professionals individuals can put in place management strategies in their everyday life to aid their recovery, through on-line and other community based resources.

  • Your Covid Recovery – This online NHS rehab service aims to provide personalised support to patients recovering in the weeks after acute COVID-19 infection. If individuals have persistent problems because of COVID-19 they may be offered a programme of recovery and rehabilitation. This may be a face to face programme or one to follow at home.
  • Post Covid Hub – This online hub aims to provide support for people with breathing difficulties after Covid-19 whether they were at home, in hospital or in intensive care. Support is also available for carers and respiratory specialists are available on WhatsApp to provide advice on post-Covid-19 breathlessness.
  • Long COVID Support – Are you living with #LongCovid? Join the conversation, access resources & receive advice from peers in the Long Covid Support Group on Facebook, with over 40,000 members & a strong, caring admin team.
  • Long COVID SOS was set up by a group of long-term sufferers to put pressure on the government to recognise the needs of those with Long COVID, and to raise awareness among the general public and employers so that people with this condition are not discriminated against.  The current ‘Message in a Bottle’ campaign highlights the sense of abandonment many feel.
  • Long COVID Kids was set up to provide advocacy and support for parents and children, as well as raising awareness of the condition in children and involvement in ongoing research.
  • Long COVID Support was formed by a group of people struggling to recover from Covid-19, who found each other online and have been facilitating international peer support and campaigning in the UK for recognition, rehabilitation and research into treatments since May 2020.

  • After a period of illness and associated inactivity an individual’s level of fitness will naturally have decreased. Visit the NHS  Your COVID Recovery webpage for advice on how to safely Get Moving Again.
  • The Chartered Society of Physiotherapy have developed a Road to Recovery Activity Planner to help record energy levels before and after activities.
  • This Long COVID Physio website has compiled a helpful list of resources relating to Pacing and other rehabilitation strategies and resources as well as a podcast.
  • The Yoga for Life Project – this is an on-line, accessible, community of yoga teachers & therapists committed to using yoga to improve health. They work together with the NHS, providing therapeutic yoga to support physical and mental health conditions.

Seeking Support for Long COVID

Long Covid Clinics in the North East

Some people will having ongoing problems with Long COVID symptoms that last more than 12 weeks and require review, investigation and treatment at a dedicated Long COVID Clinic with access to specialist advice, multi-disciplinary teams for a variety of support services related to recovery and rehabilitation, as well as access to hospital-based investigations.

Access to a specialist clinic will either be arranged by your hospital team (if your were an inpatient with severe COVID-19) or require a referral through your GP to one of the nearby NHS Long COVID Clinic. A successful clinic model was first piloted in the RVI in Newcastle, and has now extended to include Northumbria Hospital Trust and North Tyneside General Hospital locally. A local referral pathway for Long COVID is also currently being developed.

We will be working with our partners in North Tyneside and our Medical Director Susannah to give snapshots and video diary accounts of ‘What to expect from a Long COVID clinic’ in our local area, as well as the day to day fluctuations in symptoms and the challenges that she and many others are facing. Please get in touch with us on Social Media if you would like to share your Long COVID journey using the hashtag #MyLongCOVID

Occupational Health Support

More than a million people in the UK are thought to have long Covid, including over 120,000 healthcare workers. Frontline key workers who believe they caught long Covid through their jobs are becoming increasingly worried about what financial support is available to them if they cannot return to work.

While NHS hospital based staff with Long COVID receive full pay for a year in England and Wales – longer in Scotland and Northern Ireland – the situation is different for Primary Care Staff. The BMA is lobbying for equity for all NHS Staff and has produced a Toolkit for GPs and GP Practices around these issues. Many people in the private sector only get 28 weeks Statutory Sick Pay.

Anyone who is worried about the impact of Long COVID on their ability to work should contact their HR team about their concerns, and ask for an Occupational Health Assessment if that is available. The Chartered Society of Physiotherapy (CSP) resources and guidance around Long COVID and employment is also a good resource for more information about your rights. More information is available about the governments response and plans around this important issue in this BBC article

When To Contact A Healthcare Professional

For people who are concerned about new or ongoing symptoms four weeks or more after acute COVID-19 infection, visit the NHS Your Covid Recovery website that sets out what to expect, the time scales that some symptoms take to resolve, and when to seek help from a healthcare professional such as your GP or your hospital consultant / nurse specialist (if you were an inpatient.)

If you contact your GP Practice, a member of the Primary Care Team (normally a GP or nurse) will ask about your symptoms and the impact they’re having on your life. They may suggest some investigations to find out more about your symptoms and rule out other things that could be causing them. More information about guidance for GPs is here on the BMJ website.

GPs and the Primary Care team are able to support you in a number of ways, with your physical and emotional wellbeing, and if needed refer you to a Long COVID clinic locally. They may also direct you to other forms of support such as groups, activities and events that could help you with managing your Long COVID symptoms (see resources below), as well as provide emotional and practical support to you and those around you who may be caring for you.

Frequently Asked Questions

If you or someone you know has Long COVID or is experiencing symptoms you may have lots of questions. The British Heart Foundation’s ‘Heart Matters Magazine’ has a really good FAQ section on-line that are continually updated and we highly recommend.

Resources and Guidance for Health Professionals

Long COVID Clinics

The video below was produced by the Guardian newspaper in March 2021 after they were given unique access to University College London (UCL) Hospital’s Long COVID clinic. It gives an overview of what to expect from a Long COVID clinic, how wide ranging the symptoms might be, as well exploring a number of emotional and hard hitting personal stories.