M.E. and the NHS

I just filled out a survey  about neurological care in the NHS, and these are the comments I left in the final field. So frustrated. So tired of not being treated as if I have a real illness.

My GP is very compassionate, but the ME/CFS clinic is not. I left my last appointment with the specialist in tears because of her insistence on me not becoming dependant on mobility devices that I believe will improve my quality of life and allow me more independence. I know far more about my illness than my GP or anyone else I have seen, and my GP told me that ME/CFS was considered a low priority disease in the local Trust. Nearly everything I've gotten from social services, benefits, etc, I've had to do on my own initiative at a time when I'm not even able to wash my own hair. My GP's surgery has a nurse assigned to manage people with asthma and assist them with all of their health and lifestyle needs. I believe there is one for diabetes as well. Why isn't there someone assigned to people with chronic conditions, who can work as their advocate and assist them in getting the care and help that they need? I shouldn't be the person in my GP's surgery who knows the most about my illness. That terrifies me. How are they going to care for me if I get too weak to speak for myself?