"Myalgic encephalomyelitis/Chronic Fatigue Syndrome Diagnosis"

About: Burnley General Hospital / General medicine Burnley General Hospital / Neurology NHS East Lancashire CCG

(as the patient),

I presented symptoms of ME/CFS to my GP over 3 years ago. I have seen numerous consultants and general medical doctors, all of whom have little knowledge or interest in this condition. Today I am still having tests and seeing consultants to exclude other conditions. It is only in the last 6 months that my GP had made the decision to diagnose me, officially, with this condition. Right now I am waiting on specialist ME/CFS NHS services in Lancashire. I have been waiting so far for 4 months and was told only a few days ago that my wait could be a further 18-24 months!

The main problem is that once at this clinic I expect to receive nothing but fatigue management in the form of pacing, graded exercise therapy and cognitive behavioural therapy when studies have shown that these forms of treatment are of little use for this condition and can indeed make patients worse.

I have found the sheer wait for GP appointments, consultant referrals and specialist services to be extraordinarily poor. I have found the knowledge of GP's regarding this condition to be poor, leading to their inability to provide a swift differential diagnosis which is crucial for all neurological & immunological conditions.

My quality of life continues to decline due to the poor infrastructure of services to help patients diagnosed with ME/CFS. At this moment in time my future is rather bleak.

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