ME Awareness Week 2022: What’s happening with your local ME/CFS Specialist Service and/or Long Covid Clinic?

April 6, 2022


During ME Awareness Week (9th to 15th May), we'll be focusing on NHS secondary care services

  • We want to highlight those ME/CFS specialist services that have gone out of their way to introduce new thinking into their everyday practices because of the 2021 NICE Clinical Guideline or who are actively pursuing improvements to existing services. And, we’d like to encourage anyone working in a specialist service to connect with us, so we can better understand any issues they might be facing in trying to introduce the new recommendations.
  • We've seen a tsunami of Long Covid in the past two years, with the numbers of people affected growing every day. Long Covid Clinics have been set up in some parts of the UK but not in others, and some of these Clinics have merged with ME/CFS specialist services. There is a very clear overlap between Long Covid and ME/CFS and not just with symptoms but also in the way that the conditions are best managed. We are also hearing that more people with Long Covid are getting a diagnosis of ME/CFS. So, we'd also like to hear from anyone with Long Covid who has been or is being referred to a Long Covid Clinic.

How you can help: 

Let us know if your GP has made a referral to secondary care, if secondary care services exist in your area, about the length of time you are having to wait to be seen by specialists, what your experience has been of the service you are using, and if there isn't a specialist service, then how you have managed without one. 

Keep it topical, not historical. We need to know what has happened to you in the last six months. Share your recent experiences of ME/CFS specialist services and Long Covid Clinics. Be as frank as you like and let us know if you need us to protect you by not revealing your identity.

  • Have you visited your GP in the last six months to seek a diagnosis and/or referral for help learning to cope and best manage either ME/CFS or Long Covid?
  • Have you attended an NHS ME/CFS Specialist Service or Long Covid Clinic?
  • Was your GP or ME/CFS Specialist Service aware of the 2021 NICE Clinical Guideline for ME/CFS? Was your GP or Long Covid Clinic aware of the NICE Gudeline for Long Covid? Had they adopted the recommendations?
  • Do you think new funding should be made available to better enable existing ME/CFS Specialist Services to adopt the 2021 NICE Guideline recommendations?
    • Should separate funding be allocated to establish new ME/CFS Specialist Services in counties that currently do not have them?
    • Do you want the recommendations from the 2021 NICE Guideline adopted in Scotland, Wales, and Northern Ireland, and for a network of specialist services to be established?
    • What difference do you think this might make?

Your personal stories, experiences, and insights are invaluable and we greatly appreciate you taking to time to share them with us.

Contact:

Please share your stories via email Feedback@meassociation.org.uk with ‘Guideline Campaign‘ in the subject line. Don't forget to give us your full name and phone number. Even where we promise not to use them because you don't want to reveal your identity, we may need to get back to you to check certain points.

Alternatively, share your experiences and insights on social media and we'll collate them for use during ME Awareness Week.

We look forward to hearing from you! 

Tony Britton
Fundraising and PR Manager
tony.britton@meassociation.org.uk Mob: 07946 760 811

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