The new NICE Clinical Guideline for ME/CFS will be published on 18 August and it has the potential to improve health and social care provision for people with this condition.
In recent months, we have focused on drawing attention to the issues that you feel are important and have been asking about your recent experiences, your needs, and how you think current services should be improved.
We also suggested writing anonymous open letters to the healthcare professionals you have met or to the NHS and social care services in general to highlight your main concerns.
Previous open letters
If you’d like to take part and submit an open letter of your own, or have anything else you’d like to contribute on these subjects, then please email: Feedback@meassociation.org.uk
We will be using your feedback in a report on health and social care that will highlight good and bad experiences, your thoughts on service provision, and your suggestions on improving relations with the NHS and social care services.
Gaynor
Dear Health Care Professionals
It has been 21 years since my daughter got M.E. and I’d like to say the following to healthcare professionals:
Please believe what she is telling you – and take it seriously.
Learn about M.E. – It’s not about simply being tired.
Believe that the symptoms are real and that you can have some or all of them at the same time. For many years.
Please don’t refer her to a psychologist again just because, “When your mind is in a better place your symptoms will get better.” It doesn’t work that way.
Please understand other conditions can came as a result of M.E. and not the other way round.
Please don’t make it a stressful fight every 2 years to get benefits. We need medical evidence and support even if we have been unable to see you for months because of her health.
Please don’t send letters saying she will be taken off someone’s file for not attending an appointment again – even though we always let you know asap and explain how difficult attending appointments can be.
Please don’t suggest a 6-week group session then say when you miss the first one because of ill-health that you aren’t trying and will write to your GP that you don’t want to attend.
Please have more ME clinics and/or specialists trained to help people with ME. It took 15 years to be referred and the service was in a secure guarded unit. It had only one part-time ME specialist who you could only see after an initial consultation with someone who admitted they knew nothing about M.E.
Please understand that when we see the amount of money now being invested in Covid clinics for adults and children, that people with M.E. are feeling left out and stigmatised.
Please understand ME
Listen to ME