"M.E. support"

About: Queen Margaret Hospital

(as the patient),

Having my ME nurse has helped me enormously over the last few years.

Being diagnosed after 2 years of tests and not knowing what was wrong was hard. Then when diagnosed there was no real support from GP as they are limited in knowledge and was really treated using medication but there was nobody there to answer my questions. It was scary as I am moderate to severe with ME and was in constant pain, poor balance, migraines as well as fatigue.

People have the knowledge of thinking ME is all about feeling tired all the time but I have so many more symptoms. I saw a consultant and the ME nurse about the same time about 1 year after my diagnosis, after constant requests for help as my GP was not able to help and I had to find this out myself which I think is terrible, the consultant was quite vague in advice whereas my M. E. nurse was so supportive in answering my questions and giving me advice to help me cope with my illness.

It is life changing and without my M. E. nurse I really would be struggling, more money and more M. E. nurses or consultants need to be implemented as this cruel illness is more common than people are aware.

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Response from Louise Ewing, Patient Relations Manager, NHS Fife

picture of Louise Ewing

Dear "wishiwaswell"

Thank you for taking the time to post your feedback about your experience of being diagnosed with ME. It sounds like you have had a really hard time in gettting to the point of diagnosis and it is disappointing that you did not feel supported for quite some time.

It is clear that you now feel well supported by the ME nurse which is great. I will make sure that he and the Management team responsible for the service receive your feedback which I know will be much appreciated.

Thank you for taking the time to share your feedback.


Louise Ewing

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