I've just found your campaign this evening. I'm a little too late to sign the open letter but I just wanted to say a massive thank you to you both. I'm an ME long hauler (39 years and counting) and I'm so very grateful for this. Finally, there is real hope that the NHS will wake up to our reality 🤞
Congratulations on the sending of the letter to Wes Streeting and for all the press and coverage you are getting. We are cheering along with pom poms! Everything crossed that progress can be made.
Thank you so much for your campaign. Sorry we are too late to sign the letter. Our daughter has severe ME - contracted around 12 years ago after travelling in her late teens/early 20’s. We have had years of disappointment at the hands of the NHS (other than a sympathetic and caring GP in the early stages). Our daughter carried out lots of her own research into alternative methods of getting better in the early years of contracting ME and tried to exercise. My husband and I fought to find solutions within the NHS and private sector but to no avail. A week in the R,D and E in 2016, consisted of mainly psychiatric assessment and being disbelieved (although she was also told she had Ehlers Danlos Syndrome alongside ME). Whilst in hospital she was placed on a geriatric stroke ward (ward staff had no training of the condition and she came home completely demoralised and dreading ever to have to go into hospital again). We care for at Katie at home now and she has been bed bound for 10 years +. She used to have carers, however we found that even they had little training or understanding of the condition and it proved to be less stressful and more beneficial for her to do it ourselves. Too unwell to fight herself, we continue to fight for her and are so relieved to hear about your campaign to improve NHS services ME patients. As an ex nurse myself, have been appalled at the lack of understanding, training, resources and research. When I saw you speak on the news today, I was tearful with relief that others are taking up the cause…so thank you.
I've just found your campaign this evening. I'm a little too late to sign the open letter but I just wanted to say a massive thank you to you both. I'm an ME long hauler (39 years and counting) and I'm so very grateful for this. Finally, there is real hope that the NHS will wake up to our reality 🤞
Congratulations on the sending of the letter to Wes Streeting and for all the press and coverage you are getting. We are cheering along with pom poms! Everything crossed that progress can be made.
Thank you so much for your campaign. Sorry we are too late to sign the letter. Our daughter has severe ME - contracted around 12 years ago after travelling in her late teens/early 20’s. We have had years of disappointment at the hands of the NHS (other than a sympathetic and caring GP in the early stages). Our daughter carried out lots of her own research into alternative methods of getting better in the early years of contracting ME and tried to exercise. My husband and I fought to find solutions within the NHS and private sector but to no avail. A week in the R,D and E in 2016, consisted of mainly psychiatric assessment and being disbelieved (although she was also told she had Ehlers Danlos Syndrome alongside ME). Whilst in hospital she was placed on a geriatric stroke ward (ward staff had no training of the condition and she came home completely demoralised and dreading ever to have to go into hospital again). We care for at Katie at home now and she has been bed bound for 10 years +. She used to have carers, however we found that even they had little training or understanding of the condition and it proved to be less stressful and more beneficial for her to do it ourselves. Too unwell to fight herself, we continue to fight for her and are so relieved to hear about your campaign to improve NHS services ME patients. As an ex nurse myself, have been appalled at the lack of understanding, training, resources and research. When I saw you speak on the news today, I was tearful with relief that others are taking up the cause…so thank you.