Long COVID resources

It is important to understand that currently there is no ‘quick fix’ for Long COVID and that the symptoms and their impact on day-to-day life vary greatly from patient to patient.  

There are however, many positive stories of patients recovering from Long COVID and improving their quality of life.

We have collated many great resources which we use to support patients both while you are waiting to and are accessing support from the Long COVID Team.

For ease of reference, we have organized these resources according to symptom, simply click the drop-down box below to view the relevant resources.

Dealing with shortness of breath

Websites

Breathing pattern disorder

Long COVID breathing pattern disorder is a condition characterised by abnormal breathing patterns that persist for an extended period following a COVID-19 infection. Individuals with this disorder may experience a range of symptoms, including:

  • Shortness of breath — Persistant difficulty in breathing, even with minimal exertion.
  • Hyperventilation — Rapid and shallow breathing that can lead to dizziness, lightheadedness, and tingling sensations.
  • Dyspnea — A subjective feeling of breathlessness or an inability to take a deep breath.
  • Chest tightness — A sensation of constriction or tightness in the chest area.
  • Fatigue — Overwhelming tiredness that can be exacerbated by breathing difficulties.
  • Cough — Persistent or recurrent cough, often dry and non-productive.
Practical breathing exercises

Watch the Long COVID Workshop with Patrick McKeown below, featuring practical breathing exercises tailored for Long COVID sufferers. This comprehensive video is over 90 minutes long and covers the theory behind breathing difficulties and effective exercises.

Benefits of nose breathing

Nose breathing has multiple advantages, including:

  • Filtering out dust, pollen, and pollutants.
  • Warming and humidifying air to prevent airway dryness.
  • Encouraging diaphragmatic breathing and regulating breathing rate.
  • Aiding in speech, voice control, and facilitating eating and drinking.
  • Producing nitric oxide, which has antibacterial, antiviral, and antifungal properties.

 

Dealing with nutritional needs

Websites

The Patients Association Nutrition Checklist—  A paper-based tool to identify potential risk of malnutrition (as undernutrition) and offers guidance, advice and signposting on next steps.

Malnutrition pathway, COVID 19 — An overview with useful resources for patients and carers. Endorsed by the British Dietetic Association (BDA), the Royal College of Nursing (RCN) and the British Association of Parenteral and Enteral Nutrition (BAPEN).

Is what I am eating affecing my recovery?— Part of the University of Plymouth's resources, specifically designed to help people understand how diet and nutrition relate to COVID-19 recovery and it offers practical advice on what to eat, such as including more protein, staying hydrated, and eating a variety of fruits and vegetables.

The Eatwell Guide

University of Plymouth — Nutrition and COVID-19 recovery knowledge hub

Myalgic Encephalomyelitis (or Encephopathy)/ Chronic Fatigue Syndrome (ME/CFS) - British Dietetic Association

Hydration

Videos

Dealing with loss of taste and smell

Websites

Fifth Sense — Fifth Sense is a charity dedicated to supporting people with smell and taste disorders. They have developed comprehensive resources and information services to help those affected live better lives.

Abscent — Absent is a charity focused on supporting people with smell loss (anosmia) and it provides resources, support groups, and information for individuals experiencing smell loss due to various causes, including COVID-19, head injuries, or other health conditions. They aim to raise awareness, offer practical advice, and foster a community for those affected by anosmia and related issues.

Dealing with fatigue

You may experience fatigue. Fatigue affects what you’re able to do.

As well as for moving around, you also use energy for:

  • concentration
  • attention
  • problem solving
  • talking
  • making decisions

Fatigue means you have less physical, mental and emotional energy to do these daily activities.

Websites

Royal College of Occupational Therapists - Energy levels The Royal College of Occupational Therapists (RCOT) website hosts a comprehensive resource on energy conservation strategies and techniques tailored to effectively manage fatigue.   Geared towards individuals navigating various health conditions or disabilities, the content offers invaluable insights into pacing oneself, optimi s ing daily activities for efficiency, and conserving energy to stave off exhaustion. Additionally, it delves into the pivotal role of occupational therapy in empowering individuals to enhance their energy levels and elevate their overall quality of life. 

Long COVID fatigue support - Videos — Produced by NHS Hampshire and Isle of Wight.

Long COVID Physio - Fatigue LongCOVID.physio  is a n online platform committed to offering comprehensive assistance and guidance to those with symptoms post COVID-19 infection. It focuses specifically on the physiotherapy aspect of managing these symptoms, offering guidance on exercises, rehabilitation techniques, and other interventions to help individuals recover from the lingering effects of COVID-19.

Sleep Foundation

The Sleep Charity

NHS access to Sleepstation

Every mind matters - Sleep matters

Activity trackers

Activity trackers (or diaries) are useful tools that can help you understand your activity levels and how they might be affecting your symptoms. They can also help you use the "3 Ps" (Prioritize, Plan, and Pace) to avoid the cycle of feeling great one day and crashing the next.

Here’s how to get started:

Fill Out the Tracker: Print out the activity diary and fill it in for a week or even just a few days—whatever works best for you. The more accurate you are, the more helpful it will be.

Look for Patterns:

   - Are you sleeping consistently?

   - How often do you feel exhausted, and how long does it last?

   - What activities do you spend the most time on?

   - When you're busy, what kind of activities are you doing (e.g., physical tasks, reading, writing, talking, emotional/social situations)?

   - Do you balance activity with rest? What do you do when you rest?

Adjust:

   - Prioritise: Focus on what’s most important for you right now. It’s okay if that’s just a few things. Include relaxation activities like meditation, breathing exercises, or gentle stretches. Consider asking others to help with bigger tasks or delay them until later.

   - Plan: Schedule your activities in your tracker, including how long they’ll take. Don’t forget to include sleep and mealtimes.

   - Pace: Spread out your activities throughout the day or week. Make sure to include plenty of rest breaks to prevent triggering your symptoms.

By using your activity tracker in this way, you can better manage your energy and avoid the ups and downs that come with overdoing it.

How to manage your energy levels — RCOT

Acivity diary print out

Fatigue diary and weekly planner

Videos

 

Dealing with anxiety and depression

The government has produced some support for the bereaved which contains Information to help bereaved families, friends or next of kin make important decisions. This has been translated into a number of different languages.

Thrive LND has put together a resource pack to support you if you are grieving the sudden death of someone close to you, or if you are supporting someone going through sudden bereavement. 

Websites

What to do if a friend or relative dies
Provides practical advice on areas such as arranging a funeral, looking after an individual’s personal affairs and caring for their pets. 

If you need urgent help

Call NHS 111 (Option 2)

Mental Health Support contact details:

Havering Talking Therapies Service
0300 300 1554 (Option 2)
haveringtalkingtherapies@nelft.nhs.uk

Redbridge Talking Therapies
0300 300 1554 (Option 1)
Rdbtalkingtherapies@nelft.nhs.uk

Barking & Dagenham Talking Therapies
0300 300 1554 (Option 3)
bdtalkingtherapies@nelft.nhs.uk

Waltham Forest Talking Therapies
0300 300 1554 (Option 4)
wf.talkingtherapies@nelft.nhs.uk

Dealing with brain fog

Videos

Managing brain fog when recovering from COVID Produced by Cambridgeshire and Peterborough Post COVID NHS Service. This videos provides information  regarding managing brain fog when recovering from COVID.

Dealing with chronic pain

Websites

Flippin' Pain

Videos

In his TEDx talk, Lorimer Moseley explores why we experience pain and the complexities of the pain system. He illustrates how pain is not always directly related to injury but is instead a response influenced by various factors, including context and perception.

The TED Talk by Dr. Jennifer L. Murphy discusses the connection between long COVID and chronic pain. She explains how long COVID symptoms overlap with chronic pain conditions and emphasises the importance of understanding and addressing these symptoms.

The "Flippin' Pain Formula" TED Talk is part of a larger public health campaign designed to change the way people understand and manage persistent pain.

Dr Deepak Ravindran Youtube Channel — Consultant pain specialist, author of The Pain Free Mindset'

Return to work support

Work Coaching is now available through the Access to Work Scheme, providing a valuable resource for our patients. As part of this program, individuals can apply for a grant that offers practical support for their work and assistance in managing mental and physical health conditions in the workplace. This includes Work-Based Strategy Coaching.

What is Access to Work?

Access to Work is a government initiative that provides financial support to help people with disabilities or health conditions start or stay in work. This grant can cover a wide range of support, including:

  • Practical assistance at work
  • Adaptations to the work environment
  • Specialised equipment
  • Work-Based Strategy Coaching

Find out more here — Access to Work

Dealing with throat irritation & swallowing difficulties

Long COVID overview | RCSLT

The webpage discusses the role of speech and language therapists (SLTs) in supporting individuals experiencing Long COVID.

It outlines SLTs’ expertise in addressing issues related to communication, swallowing, and airway management, and provides guidance on managing symptoms like voice changes, throat irritation, coughing, swallowing difficulties, fatigue, and psychological impacts.

The information aims to assist patients, carers, and families in understanding and coping with these challenges.

Additional resources

Research

Be part of research — NIHR

The ME/CSF Society and for nearby ME/ CSF Specialist Services

NHS - Chronic Fatigue SyndromeFor general information about ME/CFS including symptoms, diagnosis, and treatment.

The ME Association — To find a local ME/CSF Specialist Service near you please visit the ME Association website. Then select 'ME/CSF Specialist Services' and enter your postcode - a list of nearby services will be generated.

Local support groups If you would like to find local support groups for ME/CSF please visit this website and enter your postcode.

Tinnitus support

Tinnitus and COVID-19

Podcast on Tinnitus — What is it and what can I do?

Long COVID videos translated into community languages