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