SPEAK UP!
Stockport ME Group have been holding meetings with Greater Manchester Integrated Care who are currently reviewing ME/CFS provision in Greater Manchester in light of the new NICE Guidelines from November 2021.
We (along with the Bury and Bolton ME/CFS and Fibromyalgia Support Group) are supporting Greater Manchester Integrated Care in holding a meeting on Thursday 25th May at 6pm for patients and carers who:
– Live or received relevant NHS services from Greater Manchester,
– Have Long COVID and
– As a result of their Long COVID experience ME/CFS type symptoms sometimes referred to as Post Exertional Malaise/ Post Exertional Symptom Exacerbation ( PEM/PESE).
We have already held two meetings for patients with ME/CFS ( not through Long COVID) and wanted to make sure that patients with Long COVID who might have issues covered by and relevant to the NICE Guidelines on ME/CFS were considered.
These meetings are to enable patients and their carers to share individual experiences good and bad in small groups so that Greater Manchester Integrated Care can consider these experiences in their review. Each group will have an volunteer facilitator ( from Stockport or Bury and Bolton Groups) and an NHS notetaker.
If you are not able to attend the meeting or you would prefer to give your feedback in written form then you are welcome to email to to us at SMEG2244@yahoo.co.uk where we will anonymised it and collate it with other responses shortly after the meeting on the 25th May. You might wish to reference the “Themes” Document which will be added to this page shortly and gives an overview of what questions the facilitators will be asking but you do not need to.
We expect the meeting to take about 75 minutes.
If you are on Facebook then it would be helpful if you could sign up for the event so we can do some planning in terms of note takers and facilitators. Also if you know anyone with Long COVID for whom this event would be relevant then please let them know about it.
Thank you!
Stockport ME Group is inviting you to a scheduled Zoom meeting.
Topic: Greater Manchester Integrated Care: Long COVID Patient Feedback Session
Time: May 25, 2023 18:00 London
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Meeting ID: 881 9373 5521
Passcode: 887777
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