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The “Expert-Patient” Corner.
By Dr Carla Maclaren. GP
Don’t be mistaken. I am by no means setting myself up as an expert in
ME. I am very much in the same patient shoes as everyone else. In fact
until I was told by a Fibromyalgia group member that I probably met the
diagnostic criteria for ME, as well as Fibromyalgia, I had no idea what
was actually making me so unwell. I didn’t seem to fit the fibro story in all the
leaflets and websites and due to brain fog, had not made the connection with ME! Physician
heal thyself....
I am an expert in my own illness experience only. We all are. No GP can ever say they know it
all BUT I have found that in a vast majority of cases that the patient is usually right and
when they say ”something is wrong” it usually is. Even if we don’t have a name for it!! I am
sure that many of you will agree.
On Saturday, 7 July, at the Garden Wise monthly gathering (which is getting larger every
month), Craig Woods asked me how my attitude had changed towards ME since I developed
it.
It’s not quite as simple as that, really, since technically I probably succumbed to it in my
late teens but wasn't diagnosed with FM until my early twenties. FM is a weird illness in
itself and has a 90% symptom overlap with ME and the same “invisibility” component that
confuses many doctors. So, for the purposes of this question it is the same illness type.
I was diagnosed at around the same time as starting my clinical medical training. I didn’t
really have much in the way of preformed ideas of any illnesses except those experienced
by family and friends such as MS and cancer.
I would say that from an early time in my career I learned the importance of the patient’s
story and that regardless of whether I thought there was objective evidence of a problem
or not that all patients deserved a non-judgemental, sympathetic, tolerant and
compassionate approach. It has stood me well and I will, hopefully, always hold these values.
While I was at University it is interesting to note that a few of my friends acquired ME but
they had a different clinical presentation from me. They had the acute post viral, positive
blood test, shorter lived version that came and went after a shorter period of respite
whereas mine still persists 18 years later.
It’s hardly surprising I thought that the progression of their ME was representative. I
never doubted they were ill as I had known them before. Unfortunately this cannot be said
of all our GPs and so they do tend to work on the premise that it’s all in the patient’s mind.
I
suggest to doctors who are unfamiliar with ME that they do some research on the subject.
A number of websites explain fully the symptoms and effects of the illness in either plain
English or in medical terms. Many of them are listed on the DGME Website Links page at:
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