Hello there everyone, I thought I'd give an update about my misdiagnosis project. Since I discovered that I have a pituitary disorder in addition to my Behçet’s I have been in touch with a lady called Jill Mizen.
Jill recently got a really good article published in the Daily Mail about the misdiagnosis of Chronic Fatigue Syndrome and ME when the actual cause was a pituitary disorder.
The article can be read here.... dailym.ai/1oViUDY
I now plan to work with Jill on our shared misdiagnosis project that will cover both pituitary disorders and other diseases such as Behçet’s, Ehlers Danlos, Familial Mediterranean Fever and other serious illnesses.
Back in 2008/9 when I got my diagnosis of Behçet’s, I got in touch with the ME Association and told them about my misdiagnosis.
I hoped that they would feature it in their magazine and they did here.... bit.ly/1jkxi9Z
As you can see from this single column piece from 2009, the writer totally omits to mention anything about Behçet’s disease.
The ME Association (MEA) have what they call "The Purple Booklet" that gets updated each year.
The idea of this booklet is to provide a source of information and advice that a patient can give to their GP or Specialist.
There is a section in this booklet that covers misdiagnosis.
I have repeatedly asked Dr Charles Shepherd - medical adviser to the MEA why Behçet’s disease is not included - I have sent him a copy of my latest misdiagnosis Statements that include statements from members here but Dr Shepherd will not budge and I do not know why?
We know here that many of us were misdiagnosed with CFS or ME prior to being correctly diagnosed with Behçet’s disease.
I was told by a senior member of the Behçet’s Syndrome Society (BSS) back in 2004 and in the years afterwards that CFS and ME are the most common misdiagnoses amongst the BSS membership.
So, I am now asking why the ME Association is now blocking mention of Behçet’s disease to their members?
I wondered if we could write to the ME Association... well I could put a letter together.
If the letter were signed by former CFS/ME patients requesting that the MEA raises awareness it might just push the MEA in the right direction to do the right thing.
Anyway, I'd be really grateful for your thoughts.