Greater Manchester Integrated Care Partnership have been carrying out a review of ME/CFS services across Greater Manchester. We have been involved in the process and have facilitated some patient feedback sessions with them. We have also lobbied for better and more consistent ME/CFS services. You can read our statement to them here.
We have been invited to assist in co-producing some ME/CFS resources that could be given to people on a ME/CFS diagnosis as well as being available to existing people with a diagnosis in Greater Manchester.
In this session we are expecting to have representatives from GMCIP there and we will be gathering feedback from members on questions like:-
“What information do you wish you were given when you received a diagnosis?” ,
“What would be needed for that information to be accessible?”
“Is there any different information you wish had been available for families and carers?”
“What topics e.g. diet, sleep, rest should/ should not be included in basic information?”
“What existing resources should be signposted?”
We are also in separate negotiations to produce some useful video resources for people new to ME/CFS and Long COVID on understanding the condition(s) as well as basic support on topics like rest and pacing. Input on what should/should not be included in these sessions would be helpful too. It might be easy to combine feedback for both purposes or it might be too ambitious. This will be clearer as discussions take place with GMCIP. There is always a small chance that discussions break down, key people are not available etc. so we might need to rearrange this session (and have a replacement session) but we do not expect that to be the case.
We always welcome people from across Greater Manchester, East Cheshire and beyond to all our sessions although we do encourage people if they have been to more than one or two to consider joining Stockport ME Group. On this occasion though regardless of membership we particularly welcome people with ME/CFS ( and Long COVID too) across Greater Manchester to share their experiences and ideas on this important topic. Experiences of both people very new to ME/CFS and people with decades of experience living with the condition are really useful. As this will be an NHS publication it is likely to be needing to stay fairly close to NICE Guidelines and evidence based practice but we still welcome input from people for whom more alternative forms of treatment have made a bigger difference to them.
As with all our sessions we welcome you to attend in whatever way works for you best. You can be in your bed in your PJ’s, you can have your camera off….just do what is right for you. If you are moving around a lot then we do appreciate it if you could turn your camera off and we might do this for you if we think it might distract or cause a problem for others. Equally if you have a lot of background noise or are eating etc. then we would appreciate it if you turn your sound off although we can do that for you if needed.
Stockport ME Group is inviting you to a scheduled Zoom meeting.
Topic: Stockport ME Group’s Zoom Meeting Co-producing ME Resources
Time: Feb 9, 2024 11:00 London
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Meeting ID: 777 116 5459
Passcode: smeg
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