Thanks
@Ravn, interesting to watch that. Yes, Fiona of ANZMES did really well, supported by Sarah Dalziel and Warren Tate. The argument seems pretty straightforward - ME/CFS is classed as a disability by the UN; and a previous submission to an NZ Select Committee on Health had resulted in a recommendation that ME/CFS be classed as a disability but the government had not followed through. People with ME/CFS are in fact disabled, and without that official recognition of the disease as disabling, it becomes almost impossible to access scarce support resources.
The point was made that it can be hard to assess the disability, because of the fluctuating nature of the disease and because of the delayed payback. If the argument has to go on here in NZ, or other countries have the same problem, I think this point is worth emphasising more. If there is poor knowledge about the disease in the medical and social welfare workforce (as there is)
and ME/CFS isn't clearly included in the list of conditions that can be assumed to be disabling, then it is likely that many people with ME/CFS, particularly those from disadvantaged communities, won't get the support that they need.
It looked like there were about 8 members of parliament present on the select committee. One is Shane Reti; he is a doctor and is with the current opposition party. A few years back, I visited a local member of parliament with a couple of other people to ask for better care for people with ME/CFS including a specialist service to serve people with ME/CFS in the South Island. He was mildly receptive but said he would consult with Shane Reti, as Shane was his party's health expert. We later got a message that the local MP would not be taking things further; I forget the exact words, but it felt as though we were being dropped like a hot potato. My impression was that Shane Reti had suggested that existing psychological support services were adequate for people with chronic fatigue syndrome.
I noticed in that video that Shane Reti's only question during the ME/CFS session was to Whai Kaha (Ministry of Disabled People), asking if the financial costs of recognising ME/CFS as a disability had been modelled. (They had not been. Personally, I think that any finding from modelling would be an argument for recognising ME/CFS. If it costs little, then it is worth providing the recognition in order to take a consistent approach to conditions recognised by the UN as disabilities. If it costs a lot, then it is clear that this group of disabled people are not currently being well served by the health system, and this inequity should be remedied.)
Anyway, I just wanted to note that, should Shane Reti's National party become government, and the odds are that they will in the next election later this year, or the one after that, as the Labour government has been in power for a while, then he will probably be the Health Minister. From the little I have seen of him in relation to ME/CFS, I suspect that would not be helpful for improving care of people with ME/CFS.
