I would like to share with you my personal experience of
getting treatment locally for ME.
In my area we have a designated specialist CFS/ME centre
based at a hospital. If a GP makes a diagnosis of CFS/ME then they would
automatically refer the patient on to this centre.
Worryingly, GPs do not seem to have any knowledge on what is
offered at the clinic or in what way it is considered “specialist”.
They seem to be under the impression that the patient is
seen and treated by a trained doctor, which is not the case.
The clinic only
deals with the symptom of fatigue and only in the sense that they offer
advice on managing it (rest more frequently, reduce stress etc.).
Whilst
this is sensible advice, it will not help the majority of ME patients with
their other more dominant symptoms and therefore they should not be referred
to this centre.
The fact that there is a clinic to which patients can be
referred means that GPs seem reluctant to take any interest in treating
other symptoms that may (or may not) be related to ME.
The problem with seeking medical advice on the subject of ME stems from the
fact that, in my experience, doctors seem to have a complete lack of
knowledge in this area.
Many still consider it a psychological condition
which, particularly in light of recent research in other countries, is
simply wrong.
ME is not the same as being fatigued.
My symptoms include
unbearable pressure in my head and back which make sleep impossible and any
activity very limited.
Experimental treatments have been used in other
countries with some success.
I have not found a way of accessing any such
treatment in this country.
I have been told that treatments that are not
proven can not be offered.
However, I have seen no evidence of the
effectiveness of the NHS treatment for any symptom other than fatigue.