I've been frazzeled for a while so I've not felt up to posting.
My misdiagnosis project is progressing slowly but it is progressing.
I now have support from a member of the House of Lords but for now I need to keep their identity anonymous.
I compiled a list of misdiagnosis statements - some made on this website.
I sent them as a letter to my House of Lords contact and I will let people know whenever there is progress.
I have also written to my MP about this and again I sent her the list of statements.
I made sure that each statement was made anonymous but each statement made a powerful point covering my overarching concerns about patients being at risk of being clinically misdiagnosed due to the existence of the diagnosis of Chronic Fatigue Syndrome.
I don't think it's any coincidence that Chronic Fatigue Syndrome came into being 25 years ago and that some of the cases of misdiagnosis outlined here are 20 or more years long.
Doctors from GP level upwards can diagnose anyone with CFS yet the majority of those doctors are not qualified to recognise rare complex diseases.
Ehlers Danlos Syndrome and Familial Mediterranean Fever are now added to the list of conditions along with Behçet's disease - all being smothered by the use of the CFS diagnosis.
When I hear back from my MP I'll post another update.
In the meantime if anyone knows other places where I can ask the same question about people who have suffered misdiagnosis before being diagnosed with Behçet's disease or other rare diseases then please do let me know.
I ought to join Facebook but I simply don't have the strength at the moment.
Once again, many thanks for the support I have had from this community here :o)