Thank you for this message of hope. I’m very much hoping that I have a new MP on July 4, who may be more empathetic towards people with ME. As a 66-year-old mother with moderate ME left as the sole carer for my 41-year-old daughter with severe ME and CRPS, who has been bedridden for five years, apparently her needs are too complex for Adult social care to be able to provide carers, but I am expected to do it all myself! I have been trying to get Disabilty adaptations carried out for her for the last 3 1/2 years, but have not been able to find the energy to drive the project forward, and there is no advocacy available to support me with those efforts We don’t want to be ill.We want to be out in the world, working full-time jobs, being useful Citizens, making up for lost time. Making friends all over again, having lost most of the people who used to be in our lives. Every little bit of hope that comes our way is like a candle in the darkness 🕯️
Thank you for your work for the ME/CFS community.
Thank you for this message of hope. I’m very much hoping that I have a new MP on July 4, who may be more empathetic towards people with ME.
As a 66-year-old mother with moderate ME left as the sole carer for my 41-year-old daughter with severe ME and CRPS, who has been bedridden for five years, apparently her needs are too complex for Adult social care to be able to provide carers, but I am expected to do it all myself! I have been trying to get Disabilty adaptations carried out for her for the last 3 1/2 years, but have not been able to find the energy to drive the project forward, and there is no advocacy available to support me with those efforts
We don’t want to be ill.We want to be out in the world, working full-time jobs, being useful Citizens, making up for lost time. Making friends all over again, having lost most of the people who used to be in our lives. Every little bit of hope that comes our way is like a candle in the darkness 🕯️