Long Covid
Sheffield ME & Fibromyalgia Group supports people who are experiencing Long Covid in the same way that the Group supports people living with ME/CFS and Fibromyalgia. We support people living in South Yorkshire and North Derbyshire. You can find out how to become a member of the group, and what membership includes here.
What is long covid?
How to access support if you have Long Covid?
How can Sheffield ME and Fibromyalgia Group help you?
You can join our Facebook Long Covid support group made for people living in South Yorkshire or North Derbyshire.
What is Long Covid?
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Many people will recover from the Covid-19 virus and feel better in a few days or weeks, and most will make a full recovery within 12 weeks. However, for some people the symptoms can last longer, and there have been an increasing number of people who have not seen any improvement, after weeks or even months. It is these long term symptoms that have been termed “long covid”, also called “post-covid”. How likely you are to develop long covid does not appear to be linked to how ill you are when you first get Covid-19. Long covid can affect people who showed little or no symptoms initially, and those who had a mild to moderate illness which was managed at home, rather than requiring hospital admission. Current evidence shows that 1 in 5 people develop long term symptoms following a covid infection.
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Many symptoms of long covid are very similar to ME and fibromyalgia and for people already living with these conditions, long covid can worsen their existing symptoms and/or make relapses more persistent. Common symptoms of long covid include:
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Extreme tiredness (fatigue)
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Shortness of breath
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Chest pain or tightness
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Problems with memory and concentration ("brain fog")
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Difficulty sleeping (insomnia)
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Heart palpitations
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Dizziness
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Pins and needles
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Joint pain
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Depression and anxiety
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Tinnitus, earaches
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Feeling sick, diarrhoea, stomach aches, loss of appetite
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A high temperature, cough, headaches, sore throat, changes to sense of smell or taste
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Rashes
Another symptom of long covid is post-exertional malaise (PEM). This is where symptoms worsen following exertion, if the exertion is beyond your energy limit. It is important to note that exertion is not just physical, it can also include mental and emotional exertion such as having a conversation or reading a book. Post-exertional malaise is usually experienced 12-24 hours following the exertion, and can last for a few days or even weeks. Post-exertional malaise can be managed by activity management or “pacing”. The aim of pacing is to avoid pushing yourself beyond your limits. Everyone's limits are different, so part of starting pacing is to find what your limit is.
How to access support if you have Long Covid?
Some people have reported that symptoms of long covid are having an impact on their daily life, both physically and mentally, affecting their ability to manage the practical activities of daily living, their mobility, cognitive function, or work. In late 2020, NHS England announced specific help for people with long term symptoms, to be provided at over 60 long covid rehabilitation clinics across the country.
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If you’re worried about Covid-19 symptoms which have lasted for 4 weeks or more, you should contact your GP in the first instance to discuss the ongoing symptoms and difficulties that you are experiencing. This is to rule out any other possible causes.
Your GP may then refer you to your nearest long covid rehabilitation clinic, which aims to provide a holistic approach to managing your long covid symptoms, taking into account any physical, psychological and social problems you may be experiencing. Your needs will be assessed to ensure that you are referred to the appropriate services to meet these needs.
The rehabilitation clinics can offer:​
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Advice and guidance to help you manage your symptoms
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A tailored rehabilitation programme via a community based team
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A long covid rehabilitation specialist therapist review
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A medical review with a rehabilitation specialist consultant (if appropriate)
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Referral to other specialist services, for example, speech and language therapy, psychological therapies, chronic fatigue services etc.
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Advice regarding returning to work
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Referral to voluntary organisations
How can Sheffield ME and Fibromyalgia Group help you?
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If you are experiencing the symptoms and effects of Long Covid, you may find that you are having difficulty managing your daily life, and perhaps your ability to work. You may be entitled to help and support through the benefits system, from social care (provided by your local authority), or extra help at work.
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We have a Facebook Long Covid support group dedicated to people with Long Covid, and also organise in-person meet-ups in local cafes for people with Long Covid. The details of the drop-ins are shared in the Facebook group. Alternatively, you can email info@sheffieldmegroup.co.uk to have the details of the next meet-up.
Membership
As a member of Sheffield ME & Fibromyalgia Group you can access welfare benefits and social care advice where we can advise and support you. We can also offer advice on accessing benefits to stay in or return to employment.
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For our members we also offer a range of free wellbeing and social activities aimed at helping you manage symptoms, improving confidence and reducing social isolation. These sessions are free for members, some are online and some are in person.
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Membership is a one-off payment of £12 per year.
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Useful resources
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Family and Friends Leaflet
It can be hard to talk about long Covid and the impact it has. We have created a leaflet for you to share with family and friends that explains what it is like to live with the illness. The insights in this leaflet were shared by people with long Covid.​
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Download the Family and Friends Leaflet (pdf)
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Long Covid Symptom Tracker
Before you visit your GP or a long Covid service it can be useful to keep track of your symptoms. We have created a diary style symptom tracker for you to use.
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Download the Long Covid Symptom Tracker (pdf)
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Long Covid NICE guideline for patients
This summaries the NICE guideline for Long Covid for people with the illness. It includes common symptoms and what to expect for diagnosis, planning care and management of symptoms.
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Download the Long Covid NICE guidelines for patients (pdf)
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Long Covid NICE Guideline for GPs
This summaries the NICE guideline on Long Covid for GPs, along with a link to the full guideline.
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Download the Long Covid NICE Guideline for GPs (pdf)
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Healthwatch Sheffield
Healthwatch Sheffield has developed a range of resources and information leaflets and videos about Long Covid, in collaboration with community organisations in Sheffield.
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Visit the Healthwatch Sheffield website >
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Other resources​
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Guide to pacing and energy management from the ME Association
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Series of videos on managing fatigue put together by the Advanced Wellbeing Research Centre at Sheffield Hallam University