"ME service is very poor"

About: Royal Devon & Exeter Hospital (Wonford)

I was referred to this service because I was so exhausted I could hardly leave my bed. There was an extremely long wait to see anyone and meanwhile my health had improved a little so that I was at least able to attend the appointment. I wasn't really offered any treatment although CBT was mentioned. Apparenty you can only have CBT and exercise - although exercise was what had made me so ill. I was told I would not improve without this treatment, although cinical trials show that this treatment actually harms some patients and does not produce much improvement in those it is said to help. Unless I am prepared to waste NHS resources on this I can get no other treatment. Although ME is classed as a neurological disease I haven't seen a neurologist. My health has now improved somewhat so I no longer worry about being bed bound but attempts to increase activity beyond a low level cause nausea and send me to sleep. The ME service appears to be designed to limit access to medical care, not to help patients who have severe probems with exercise. Although I value what the hospital does in other areas I do not think the ME service does a good job.

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Response from Royal Devon & Exeter Hospital (Wonford)

Thank you for taking the time to share your experience. I am sorry to hear of your concerns. As the issues you have commented on are quite complex, we would appreciate the opportunity to discuss your concerns with you further. If you would like to do this, please contact out Patient Advice and Liaison Service (PALS) on (01392) 402093.