A request for comparative statistics on Motor Neurone Disease and Guillain-Barré Syndrome in NZ
T Monk made this Official Information request to Ministry of Health
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From: T Monk
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
Ministry of Health
Dear T Monk
Thank you for your request for official information, received by the
Ministry of Health on 16th July 2018. The Ministry's reference number for
your request is: H201805030.
If you need to contact us at any stage about your request, please quote
this reference number in your correspondence.
You requested:
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.
Your request has been logged and you can expect a reply no later than 8th
August 2018 as required under the Official Information Act 1982.
Please note that a working day is defined in the Act as ‘any day of the
week other than a Saturday, Sunday, Good Friday, Easter Monday, Anzac Day,
Labour Day, the Sovereigns birthday, Waitangi Day and a day in the period
commencing 25 December in any year and ending 15 January in the following
year.
If a large amount of information has been requested or if the Ministry
needs to consult in order to make a decision, we may need to extend this
date (this is provided for in section 15A of the Act). We will advise you
if such an extension is necessary.
Yours sincerely,
Maria Perez
Ministerial Support Services
[Ministry of Health request email]
Ministerial Services l Government Services l Office of the Director
General
[1]http://www.health.govt.nz
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Ministry of Health
Dear T Monk,
Please find attached a letter regarding your request for official
information.
Kind regards,
Gemma
Ministerial Services (OIA)
[Ministry of Health request email]
Government Services
Office of the Director-General
Ministry of Health
[1]www.health.govt.nz
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From: 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
Ministry of Health
Dear T Monk
Thank you for your request for official information, received by the
Ministry of Health on 7 August 2018. The Ministry's reference number for
your request is: H201805417.
If you need to contact us at any stage about your request, please quote
this reference number in your correspondence.
You requested:
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.
Your request has been logged and you can expect a reply no later than 4
September 2018 as required under the Official Information Act 1982.
Please note that a working day is defined in the Act as ‘any day of the
week other than a Saturday, Sunday, Good Friday, Easter Monday, Anzac Day,
Labour Day, the Sovereigns birthday, Waitangi Day and a day in the period
commencing 25 December in any year and ending 15 January in the following
year.
If a large amount of information has been requested or if the Ministry
needs to consult in order to make a decision, we may need to extend this
date (this is provided for in section 15A of the Act). We will advise you
if such an extension is necessary.
Yours faithfully
OIA Services l Office of the Director General
[Ministry of Health request email]
[1]http://www.health.govt.nz
****************************************************************************
Statement of confidentiality: This e-mail message and any accompanying
attachments may contain information that is IN-CONFIDENCE and subject to
legal privilege.
If you are not the intended recipient, do not read, use, disseminate,
distribute or copy this message or attachments.
If you have received this message in error, please notify the sender
immediately and delete this message.
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Ministry of Health
H201805417.pdf
127K
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Appendix One Guillaine Barre.pdf
555K
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Appendix Two Motor Neuron Disease.pdf
550K
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View as HTML
Dear T Monk
Please find attached a letter regarding your request for official
information.
Kind regards,
Ministerial Services (OIA)
[Ministry of Health request email]
Government Services
Office of the Director-General
Ministry of Health
[1]www.health.govt.nz
****************************************************************************
Statement of confidentiality: This e-mail message and any accompanying
attachments may contain information that is IN-CONFIDENCE and subject to
legal privilege.
If you are not the intended recipient, do not read, use, disseminate,
distribute or copy this message or attachments.
If you have received this message in error, please notify the sender
immediately and delete this message.
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Things to do with this request
- Add an annotation (to help the requester or others)
- Download a zip file of all correspondence
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T Monk left an annotation ()
Dear Sir or Madame,
Here is some supplementary information and questions related to the prior question regarding rates of Motor Neurone Disease and Guillian Barré Syndrome in NZ and potential causes.
New Zealanders eat ~111 million chickens per year.
https://www.stuff.co.nz/business/8493339.... ~65% of these are reportedly infected with Campylobacter. Given a lot of people tend to be sloppy with food hygiene this tends to call to question the claimed relationship between Campylobacter infection and Guillian Barré syndrome.
In 2016 the water supply in Havelock North was reportedly contaminated. 1/3 of the population reportedly came down with gastrointestinal symptoms. The Dept of Health reported that in that case the main organism identified was Campylobacter.
http://www.arphs.govt.nz/Portals/0/HPA%2...
QB1. What is the incidence and prevalence of seropositivity (as an indicator of asymptomatic Campylobacter infection) in the NZ population?
(If this has not been tested, that is useful information for future medical research)
QB2. How many of the Campylobacter diagnoses made in Havelock North 2016 gastroenteritis outbreak were made by a laboratory; or were assumed clinical diagnoses?
QB3. What contaminants were tested for (and found) in the water (bacterial, viral, chemical) during the Havelock North outbreak?
QB4. What has been the annual incidence and prevalence of Motor Neurone Disease and of Guillian Barré Syndrome in Havelock North annually over the past 20 years?
NZ has great health and agricultural researchers who have discovered many important things, to the benefit of New Zealanders and the rest of the world.
Relevant statistics are not only vital for evidence based research; but for our country (which has a great publicly funded health care system) to monitor for disease; for the sake of the health of New Zealanders, and due to the potential socio-economic implications of disease and factors that cause diseases.
I believe NZ, like other countries with universal health care, does monitor diseases; so it should be possible to find answers to these questions fairly easily.
Thank you once again for your help.
T Monk
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