the bbme logo, this consists of a circle from which three hands reach into the cntre towards one another, each hand is a colour that represents the support ribbon colour for their respective condition, one is dark blue for MECFS, another is purple for Fibromialgia, and the other is teal for Long-COVID, overlaying the circle the text reads "BBME Support Group", as well as the groups moto "Breaking the Isolation"

About Long-COVID

“It is defined as the continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other explanation."

~ World Health Organisation

Long-COVID, also called Post-COVID Syndrome, refers to the long-term effects of COVID-19 and can affect individuals of any age. This condition is still being studied. The NICE (National Institute for Clinical Excellence) 2021 Guidelines define it as: “Signs and symptoms that develop during or after COVID-19 and continue for more than 12 weeks without an alternative explanation.”

 

While it is understood that Long-COVID results from COVID-19 infection, the exact physiological process is still unknown. NICE has issued a Rapid Guideline that continues to evolve as more evidence emerges.

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Symptoms

Researchers and patients have identified over 200 symptoms linked to Long-COVID. The most common symptom is fatigue.

Other frequently reported symptoms after six months include: 

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  • fatigue

  • PEM/PESE

  • brain fog/cognitive dysfunction

  • shortness of breath

  • heart palpitations

  • dizziness

  • joint pain and muscle aches. 

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Additional symptoms following COVID-19 infection include: 

  • chest pain

  • insomnia

  • pins and needles

  • tinnitus

  • earaches

  • nausea, diarrhoea, stomach aches, loss of appetite

  • cough, headaches, sore throats

  • changes in smell or taste

  • fever

  • rashes 

  • and POTS. 

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Mental health linked to Long-COVID include:

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  • increased anxiety (28%)

  • depression (13%)

  • PTSD (20%)

  • suicidal thoughts (10%)

  • reduced life satisfaction and daily functioning

Symptoms can emerge after initial recovery or persist from the initial illness, and they may fluctuate or relapse over time.

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Diagnosis

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If you suspect you are experiencing persistent or long-term effects of COVID-19, the NHS advises contacting your GP, who will determine the appropriate course of action.

If your symptoms impact your daily life, you may be referred to an NHS Long-COVID service for children, young people, or adults. These services can conduct further tests to diagnose and monitor your symptoms.

Treatments

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In recent years, the NHS in England has made significant investments to support people with Long-COVID. This includes creating specialist post-COVID services for adults, young people, and children, and developing resources for self-management. Clinical teams are also being trained to support those affected. 

Current self-management recommendations include keeping a condition diary, avoiding alcohol, maintaining a routine, eating a balanced diet, treating depression and anxiety, and engaging in gentle exercise. 

It is important to note that there is no evidence from randomised controlled trials on the effectiveness of rehabilitation for Long-COVID. Most recommendations are based on expert opinions or evidence from other conditions. So, always listen to your body; sometimes rest is more beneficial than exercise. Activity management or pacing and monitoring heart rate can be safe and effective for managing fatigue and PEM/PESE.

Treatments, Adjustments and Adaptations

Our general Treatments, Adjustments and Adaptations page contains information relevant to all 3 conditions, including:

  • Lifestyle Management

  • Pacing

  • Massage therapy

  • Hydro, physio, and Occupational Therapy

  • As well as looking after your mental health & wellbeing

  • plus much more 

Education for those who care...

It is crucial that those who care about you educate themselves about your condition, how it affects you, and your evolving needs. Supportive moral and practical assistance should complement your own efforts to improve your quality of life. Encouraging them to visit this website is a good starting point. Over the next several months, we’ll be developing an information pack with input from our members to better support caregivers. 

 

Of course, people who support you need support themselves, and we would love to hear suggestions of information and services you would like us to include in the caregiver pack too. 

 

BBME Membership is open to people who support and care for those with ME/CFS, Fibromyalgia, or Long-COVID; membership is free to one caregiver from your support network.

 

Your Input Matters!

If you have suggestions for what should be included in this pack, please email us at: wellbeing@mesupportgroup.co.uk with “caregiver pack suggestions” in the Subject line.