Dear Ministry of Health,

A friend of ours who lives on Waiheke Island is rapidly deteriorating with Motor Neurone Disease. Other friends know of at least one other person on the island with this rare, (usually fatal within 3 years), neurological condition.

“A “cluster” of six port workers in the Nelson area developed MND within a 10-year reporting period (1995–2005), five of them within a 4-year period (2002–2005). The estimated population of port workers in the Nelson area at the time was 150. This led to postulation that these MND cases were linked to the use of methyl bromide gas as a fumigant for cargo. The small numbers involved mean that the cluster could simply have been due to chance and that continued reporting is needed.”

“In 2006 a larger, prospective longitudinal study in Christchurch reported the highest incidence of MND in the world thus far, finding a steady increase in incidence over a 22-year period from 1985, the cause of which is yet to be determined. When included in large international meta-analyses (and considered to represent the national average), 👉🏼these two studies paint New Zealand as having extraordinary disease rates not attributable to higher numbers of familial cases👈🏼”

https://www.nzma.org.nz/journal/read-the...

Besides MND, we personally have one friend on Waiheke (and another in Auckland) who have had Guillain-Barré Syndrome. In both cases the severely paralysing (GBS) condition was assumed to be due to eating contaminated chicken (though no one else in their families who ate the same food developed any symptoms of Campylobacter or GBS). In both of those cases, (thanks to excellent medical care and rehabilitation) our friends with GBS eventually fortunately recovered most function.

Guillain-Barre syndrome may be triggered by:
i. Most commonly, infection with campylobacter, a type of bacteria often found in undercooked poultry
ii. Influenza virus
iii. Cytomegalovirus
iv. Epstein-Barr virus
v. Zika virus
vi. Hepatitis A, B, C and E
vii. HIV, the virus that causes AIDS
viii. Mycoplasma pneumonia
ix. Surgery
x. Hodgkin's lymphoma
xi. Rarely, influenza vaccinations or childhood vaccinations

https://www.mayoclinic.org/diseases-cond...

We have a world class publicly funded health care system in New Zealand.
It is in our interest to monitor the incidence and prevalence of various disease - especially those that are likely to be highly debilitating (requiring a lot of resources) or cause fatality at an early age.

Campylobacter was detected in 65 percent of retail chicken samples in New Zealand
https://www.wattagnet.com/articles/29187...

There is a tendency to assume certain triggers cause diseases. While Campylobacter from undercooked contaminated chicken is an alleged cause of GBS, why don’t other people who eat infected chicken get the disease? (ie Its reasonable to wonder what else might be a cause or contributing factor in the severely paralysing GBS cases.)

Also, if Campylobacter really is a cause of paralysing GBS, could it also be a cause or contributing factor in MND?

1. a. What is the incidence of Motor Neurone Disease (MND) in NZ overall, versus in other countries of the world?
1. b. What is the incidence of Guillain-Barré Syndrome (GBS) in NZ overall, versus in other countries of the world?

2. a. What is the comparative incidence of MND in NZ by region?
2. b. What is the comparative incidence of GBS in NZ by region?

3. a. What is the incidence of MND on Waiheke Island?
3. b. What is the incidence of GBS on Waiheke Island?

4. a. What is the prevalence of Motor Neurone Disease (MND) in NZ overall, versus in other countries of the world?
4. b. What is the prevalence of Guillain-Barré Syndrome (GBS) in NZ overall, versus in other countries of the world?

5. a. What is the comparative prevalence of MND in NZ by region?
5. b. What is the comparative prevalence of GBS in NZ by region?

6. a. What is the prevalence of MND on Waiheke Island?
6. b. What is the prevalence of GBS on Waiheke Island?

7. What are the gross numbers and rates of reported Campylobacter infections (by site of origin) for each of the past 20 years in NZ

8. a. Are patients diagnosed with GBS subject to studies for viral and Campylobacter infections (and are the cohort who also ate the suspect chicken subject to these tests?
8. b. Are patients diagnosed with MND subject to studies for viral and Campylobacter infections?

9. a. Does the NZ govt do regular testing for chemicals in urban drinking water supplies? (If so, where is this done; and could you please provide results from the past 20 years or a link to results)?
9. b. Does the NZ govt do regular testing for chemicals in rural or semi-rural (such as Waiheke Island) areas where agriculture and industry may result in atmospheric contamination entering water tanks from water gathers on roofs? If so can you please provide the annual stats for the past 20 years.
8. c. Is there a lab where rural and semi-rural households can send water samples for testing?

It is of practical importance to us as a country to be monitoring what is happening to the environment, especially contaminants that may affect the rates of various serious diseases.

Thank you for your help.

Yours faithfully,

T Monk

Dear Ministry of Health,

Thank you for supplying the numbers of hospital discharges with the diagmosis of Guillian Barré Syndrome and Motor Neurone disease.

Could I please have these stats for a 20 year period to establish a trend

I appreciate that whoever has replied to my inquiries has access to digital data - so stats over a longer period should be easily accessible.

As far as I can see, ESR, a private company does not publicly provide long term results on anything.
Given the government pays ESR it would be odd if the Ministry of Health did not have access to ESR data.

Could you please check to see if ESR data is stored by the govt; in which case the preferred source for long term stats related to Campylobacter infections would be the Ministry of Health. If the govt has it or has access to ESR data on it, could you please supply that and the rates of Guillian Barré Syndrome and Motor Neurone Disease over 20 years.

Thank you

Yours faithfully,

T Monk