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Healthcare 4 ME
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“People with ME/CFS need the same access to healthcare and support as other NHS patients that is commensurate with the severity of their illness.”
NICE Guidelines 2021

Share your experience of ME/CFS or Long Covid health and social care

Do you have any experience of health and social care in Buckinghamshire, West Berkshire, or Oxfordshire? We would like to hear your feedback whether good or bad as this helps to make informed decisions when recommending services.

health@meassociation.org.uk

This is ME

  • “Thank you every so much you have been absolutely brilliant. I wish I knew sooner where to turn. I do appreciate what you doing and I must say you helped me more than anyone in the past year. Thank so much”.
  • “Thank you again for your support and the information provided, knowing we have a network of such attentive and intellectual individuals really does give us the encouragement we need to work through this.” 
  • “Thank you again for your support earlier in the year in navigating the system too, I really appreciated it.”
  • “Thank you for the work you are doing to try and change things, it is much appreciated.”
  • “I am so pleased you are taking affirmative action on my behalf and others like me. Honestly, it's so reassuring to have an advocate who speaks with knowledge and leaves the emotion aside which is inevitably what patients and carers add in”.
  • “I just wanted to update you on my situation and send you heartfelt gratitude for all your help. Thank you so much. Without your input, I'm sure it would have been a much longer process…”
  • “Thank you so much for producing the hospital care pack. For those of us who have struggled to convey our needs without seeming “precious” it is extremely helpful.”
  • “The H4ME team have been asked to present to another CHC team about the complexities of Severe ME. This was on recommendation from the teams who were at the last presentation”.
  • “I am so grateful to the ME Association for providing this level of support, advocacy and understanding. When you ask for help it's always available in one form or another. Please pass on my appreciation to all. It makes such a huge difference to people like me”.
  • “I wanted to say a big thank you. I'm working on asking for the referral now and knowing that I have had someone fight for me, even if it's just finding information, has been such a welcoming feeling. It's been years now of trying to figure out what's going on internally and since joining the ME Association my family and I can finally understand and comprehend what ME is”

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Written by Dr Charles Shepherd, other advisers, and topic experts

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