Patient Groups Prepare For Patients With Long Covid

As each month passes, we get a widening picture of emerging symptoms of `long COVID’. Gradually, long Covid communities are beginning to appear worldwide, particularly informally on social media. However, the clusters of symptoms can be diverse. So established groups are steppi ng up to support patients where symptoms match those of their communities.

Asthma UK and the British Lung Foundation

Both patient groups formed a partnership just before the pandemic to serve wider patient communities and recognise the crossover of asthma and other respiratory conditions. Now they have launched a comprehensive `post-COVID’ hub for people with respiratory symptoms resulting from the disease.

The new website addresses three audiences – people with respiratory symptoms from long Covid, researchers and healthcare professionals. The clinical section tracks emerging evidence and guidelines. The research section gives an overview of research to date, and critically outlines research priorities ahead.

For patients, the new site offers one to one support through a helpline and a WhatsApp link.  It brings together: 

  • the latest information on respiratory symptoms of long Covid
  • quotes from ongoing surveys to share people’s experience of the disease
  • guidance on the physical, mental and emotional impacts of long Covid.

Support for patients is targeted to three groups, according to the severity of the original infection, and scale of care:

  • For people who were looked after at home
  • For people who were admitted to hospital 
  • For people who were treated in intensive care.
ME Association

The UK ME (myalgic encephalopathy or encephalomyelitis) Association focuses on clusters of long-Covid symptoms that are also characteristic of ME, particularly debilitating fatigue. 

When submitting evidence for a UK NICE guideline, the ME Association noted: “There is an important overlap between Post-Viral Fatigue Syndromes, ME/CFS and Post-Covid fatigue and Post-Covid syndromes.” 

Research and clinical guidance is evolving quickly, and the Association updates its guidance regularly.

Currently a core detailed guidance document “Post Covid-19 fatigue, post/long Covid-19 syndromes and post-Covid ME/CFS” offers 24 pages of information from symptoms through to practical tips on managing them. It’s downloadable from the `leaflets’ part of the site.

NEXT STEPS:

Visit Asthma UK and the British Lung Foundations post-Covid hub at…

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Visit the ME Association website at…

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Download detailed guidance from the ME Association on long Covid at…

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