Hello there everyone, I am making slow progress with my misdiagnosis project.
This evening I have written a letter to the Royal College of General Practitioners asking them to address the issue of clinical misdiagnosis in relation to Chronic Fatigue Syndrome.
The chairwoman of the RCGP is none other than Dr Clare Gerada and it just so happens that her husband is none other than Professor Sir Simon Wessely.
Professor Wessely is the psychiatrist who has lead and coordinated the spread of Chronic Fatigue Syndrome diagnosis across the NHS covering the last 20 years.
To address this issue I am going to campaign for one major change that can be made to address the issue of patients being misdiagnosed for 5, 10,or 20 years.
I am going to put a case forward that restricts the initial diagnosis of CFS to 12 or 18 months.
Should the treatment for CFS fail for that patient and if that patient has deteriorated over that fixed time then they should have an automatic right triggered so that they can receive a complete independent reassessment that includes considering rare diseases as possible alternative diagnoses.
Had this been available for me and for all those who have got in touch with me with terrible statements citing misdiagnoses that went on for 2 decades in some cases; I have no doubt that I'd not gone for 12 years with my own misdiagnosis.
The numbers of those who are living with a rare disease - misdiagnosed with Chronic Fatigue Syndrome must be significant.
This has been going on since the early 1990's when the diagnosis of CFS was introduced into the NHS at all levels from GP's upwards.
So thinking logically - there will have to be a total reassessment of patients presently diagnosed with CFS and especially so for those who have been given this diagnosis 5, 10 or 20 years ago.
I'll update you all again when I've had a reply from Dr Clare Gerada.