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I was also asked what I thought about the Canadian Consensus Documents
Guidelines for Chronic Fatigue Syndrome and Fibromyalgia.
How many superlatives may I use? They are very well written and comprehensible to most
well read patients with the help of a medical dictionary.
I use them in preference to the NICE guidelines from England. I find the NICE guidelines
to be ill-conceived and do not reflect my experiences of the illness or of the treatments.
The Canadian ones also have the benefit of not looking solely to traditional medicine. They
acknowledge that patients' reports of effective treatments such as reiki or reflexology
play a part too.
A member pointed out how difficult it is to obtain a diagnosis and be taken seriously, often
by a GP who knew the patient before the onset of ME. As a fellow ME sufferer I find
having to validate my illness very difficult too.
Another bugbear that was mentioned is that although “severe fatigue” is written in our
notes we are often scheduled for appointments at 0900 hrs in DG Royal Infirmary, which
might be OK sometimes if you live in the town but not if you live in Stranraer. Such
inexplicable attitude to the individual is difficult to comprehend and implies disbelief on
the part of NHS staff. Small changes in how our treatment is co-ordinated and
communicated can make an enormous difference in our lives. After all we are too fatigued
to complain and educate others constantly are we not?!
Dr Maclaren would like to hear from Doctors, Nurses, Occupational Therapists ,
Physiotherapists and Social workers who have had a personal experience of
managing ME with a view to forming a panel of expert patients. Possible developing
into a national Sub group that could help with influencing the MCN. ed
BUPA Great Edinburgh Run
The BUPA Great Edinburgh Run, a 10 km road
race, which took place on Sunday 6th May 2007
attracted 8,500 participants from every corner
of the UK and every postcode in Scotland, bar
the Outer Hebrides. Distance runner
Liz McColgan was running for Leukaemia
Research, and Ben Connolly (pictured) was
running for ME Research UK, and was cheered
on by his wife Donna, a member of
ME Support Fife. After gathering in the sponsorship money, Donna found that
£380 has been raised — so congratulations to Ben, and many thanks!
ME Research UK
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