Hi All. You may remember that about this time last year I wrote about some of my hopes of what ANZMES might be able to achieve for ME politics in New Zealand. I had written to The Minister of Health Annette King several times with the suggestion that a Working Group or similar be formed to advise the government on matters relating to ME in this country. I had envisaged that hopefully a range of people with a range of ideas might form this group and that it’s suggestions would improve things for ME sufferers in New Zealand. Initially I had thought that she had shown some interest in this proposal, or at least had not dismissed it outright. However just before Christmas I received a letter from her saying that there was no chance that this would occur, at least not in the near future. This was disappointing because I feel we do need closer contact with those in government to facilitate improvements in the future care of sufferers and to increase acceptance of the condition.

I was disillusioned but some events this year have helped to alleviate this disappointment. I perhaps shouldn’t have felt this so acutely anyway because I know that the war to improve things in the ME world is a long one and that setbacks abound and that actual progress is rare. Sometimes however chance takes a hand in events. What seemed like luck probably wasn’t entirely because what occurred partly occurred because many on the committee were still ferreting away at creating political connections and so the apparently random seeds ‘fell on fertile soil.’

Part way through this year a GP who knew Ros Vallings informed her in a chance email that he had noticed that ‘The New Zealand Guidelines Group’ was advertising on its website for people to review various overseas guidelines on ME/CFS. This was entirely unknown to us and came as a surprise to me as one of my main hopes for the Working Group had been that it might review and perhaps create guidelines for doctors in New Zealand on how to treat ME. Good guidelines I believe may be one of the best ways to affect improved care for ME sufferers here. Ros applied for a position and was accepted (and so she should have been if they had known anything of her work.) I also applied and considered downplaying the fact that I had ME myself as I thought the deciding people might think I was therefore not objective enough to be considered. However the key person running the programme there heard that I was a sufferer as well as a doctor and thought, in contrast to my expectations, that this was in fact a good idea. However as I remember others on the committee had also had contact with some of those involved and probably aided us in our selection. The facilitator of the project and a lecturer at Canterbury University were the only other two chosen to do the reviews.

We reviewed the Australian Guidelines, the UK Report to the CMO, the Canadian Case Definition Guidelines and the New Jersey Guidelines in America. I found the process quite tiring as it had to be done to a deadline but it was also very interesting and stimulating. I greatly appreciated at the time Jill Booth’s offer of help in editing my bit in Meeting Place that was due at that time, and her subsequent completion of this for me. Ros had to squeeze the reviews in somehow amongst the many other things she has to do. Our reports were submitted and the coordinator then combined our markings and suggestions on the reports into one paper. This has been submitted to the Health Dept. and they will decide what happens next. Hopefully they will propose that new guidelines be created here for NZ docs. If they do we may be further involved in this process. Hopefully this will eventuate as it is a chance to influence things positively. Such a report would be bound not to satisfy everyone though as there are now so many dispirit interests involved in CFS. It has been some time since the report was sent to the Health dept. but the wheels of government departments turn slowly. As long as some progress is being made one day we may have firmer suggestions for doctors to follow here. One unfortunate problem is that GPs and specialists are inundated with guideline papers on nearly every disease under the sun at present and are beginning to suffer from too much Guideline-itis - a nasty condition not related to CFS but known to cause similar glazing of the eyes and marked inertia. Hopefully, though, because doctors are generally keen to understand this confusing condition better guidelines on CFS will be taken notice of.

October 2004. Unfortunately the New Zealand Health Dept. decided not to go ahead with a full scale project to create specific New Zealand guidelines for the care and management of CFS for health professionals. They did produce a summary of The Guidelines Group report and this was circulated to doctors. If anyone out there is aware of ways the NZ Health Dept could be convinced to create guidelines we would be interested. Ken Jolly.