I'm ill and its not going away so I follow my trusted path and approach the GP. Many GPs don’t have any professional development on ME and many still take an attitude from their training in the 80’s which suggested ME was a psychosomatic condition. Fortunately, my GP was very supportive but limited within the NHS guidelines. After an initial few rounds of blood tests, nothing had shown up. There is only limited conversation in the short GP appointments but after my prompting on what he was considering it could be, the GP briefly mentioned ‘PVFS’ and so my search for information began….
Googling PVFS led to finding the term CFS/ME and then into the 'world' of M.E. I was well aware that the internet can provide buckets of information but that's not the same as knowledge. As Einstein said, "the only source of knowledge is experience".
ME support sites were the first port of call, alongside various medical sites & articles.
I took the advice from one support site - keeping a diary, developing a document to share with friends and asking work to arrange an occupational health appointment.
Word also 'gets out' via family & friends and they bring back experience from others and various ideas. My wife had talked to a colleague at work who had previously had M.E. but had recovered following treatment. She kindly lent me Perrin's book and I was finally able to start relating what I was experiencing to a external reference.
The techniques for self-diagnosis were buried deep in the book so it wasn't until I had my initial consultancy with Dr Perrin that an actual diagnosis was made.
A comprehensive medical history review and structured questionnaire created an initial score. This includes a review of previous medical investigations that can cause fatigue including anaemia, heart conditions, lung disorders, bowel and kidney disorders, glandular fever, Addison's disease, myasthenia gravis, Gilbert's syndrome, infection, hormonal disorders, neuromuscular disorders, tumours and auto-immune diseases. It is important that these other causes are ruled out.
Perrin's diagnosis scores out of 10 (with 10 being no ME symptoms). After the structured review, I was scored at 6/10.
Physical signs are then used to complete the diagnosis.
Following the physical examination, the Perrin score was revised to 4/10.