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Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Condition Specific Support Resources:

  1. Long COVID - NHS (https://www.nhs.uk/conditions/long-covid/)
  • This is the official NHS resource for Long COVID, which refers to ongoing symptoms after a COVID-19 infection.
  • It provides guidance for patients and healthcare professionals, including:
    • Symptoms and self-care advice.
    • How to access NHS Long COVID services.
    • Rehabilitation and support options.
  • It’s a trusted source for evidence-based information within the UK healthcare system.

 

  1. ME Association (https://meassociation.org.uk)
  • A UK charity focused on Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).
  • Offers:
    • Information and research updates on ME/CFS.
    • Practical advice for patients and carers.
    • Advocacy for better services and recognition.
  • They also provide a support line and resources for managing symptoms.

 

  1. Action for ME (https://www.actionforme.org.uk/)
  • Another major UK charity supporting people with ME/CFS.
  • Their work includes:
    • Campaigning for improved healthcare and research funding.
    • Providing support services, including peer support and welfare advice.
    • Resources for both adults and children living with ME.
  • They aim to empower patients and influence policy change.

 

  1. 25 ME Group (https://25megroup.org/)
  • A UK-based charity specifically supporting the most severely affected ME/CFS patients (those who are bedbound or housebound).
  • Focus areas:
    • Advocacy for this subgroup, which often has very limited access to care.
    • Providing information and emotional support for patients and carers.
    • Raising awareness about the challenges faced by the most severely ill.

 

  1. Long Covid Support (https://www.longcovid.org/)
  • This is a UK-based patient-led charity created by people living with Long COVID.
  • Its main purpose is to support individuals affected by Long COVID and advocate for better care and research.
  • Key features of the site:
    • Information and resources for patients, families, and healthcare professionals.
    • Peer support networks to connect people living with Long COVID.
    • Campaigns and advocacy for improved NHS services and research funding.
    • Guidance on managing symptoms and accessing help.
  • It’s a trusted community-driven platform, complementing NHS resources by focusing on lived experience and patient voice.