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Trail:

To the Ends of the Earth

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In the worker’s canteen I met up with one of the miners who had been eager to meet with me. He had been bereaved and left with two young children a few years earlier after his wife had died of a motor neurone type disease apparently identical to the Aboriginal Groote syndrome. Maxine had worked in the laboratory at the mine where I was taken to next. I met the chief chemist in the lab who showed me the fine powdery samples of jet black manganese dioxide dust. As these lab workers spent all day analysing the stuff, it was easy to see how Maxine must have endured her fair share of exposure during her time in these labs. Furthermore, the most efficient route of manganese uptake into the brain, is via the inhaleatory route; whereby airborne manganese can be efficiently absorbed directly up the nasal-olfactory route into the brain .

Whilst it was reasonably apparent that the mining company had been doing an impressive job regarding the preservation of the environment and safeguarding some of the socio-economic interests of the Aboriginal community, I did however feel that there was an insidious problem brewing with the issue of airborne manganese dust being kicked up by various factors. Although the corporation had been attempting to dampen down the dust from time to time by spraying water, there were storage heaps and tailings heaps of manganese very close to the village of Angurugu (just a few hundred metres from some houses) and storage heaps around the jetty very close to the mining village of Alyangula. All residents had been complaining of black dust settling inside their houses - even the houses that had air conditioning.

It seems that the problems of this community were fundamentally based upon the naturally high concentration of manganese in the bedrock which was so close to the surface - with all local water and home grown food supplies being contaminated. But the dust that was being generated by the mining operation had considerably exacerbated the problem. It should be remembered that once manganese is inhaled - like aluminium and silver, etc - it does not need to travel to the lungs and cross into the blood, etc; it can be absorbed directly into the brain via the nasal-olfactory tract.

I was ushered into the manager’s office. After cracking a friendly joke about the naturally high concentrations of manganese in the cup of tea he was about to give me, the manager seemed more interested in tape recording every word of what I was up to - over an interview lasting one hour - whilst failing to divulge anything that they were up to. I even failed to extract a map of the main manganese outcrops on Groote from them! Nonetheless, he seemed a nice, straight forward guy who was fresh to the job and genuinely interested in environmental issues surrounding metals - well, whenever his company hat was off.

The manager was also continually referring me to the studies at the Menzies School of Health Research and Royal Darwin Hospital in Darwin which had been funded by the Mining Corporation itself. These concluded that Groote Syndrome was solely a disease linked to the genetics of a specific Aboriginal clan which had interbred with the Macassan sailors who used to visit Groote for trepang three hundred years ago.

So if these factors were true, why didn’t the disease strike many years ago, and, furthermore, why didn’t the disease affect all of those other races around the world where the Macassans had also interbred?

But I kept on reminding myself of Gayangwa Lalara’s words of local wisdom surrounding the first cases of Groote Syndrome. She categorically says that there were no cases of Groote syndrome around when she was a child. The first case struck her father, which happened after they had settled full time at Angurugu and after the initial mining explorations had just began. The Aboriginal Elder of Angurugu, Murrabuda, Wurramarrba, also confirmed this to me. In fact, the only people who have stated otherwise were the ‘expert’ authors of a spate of publications on studies at the Menzies School of Health research that had been funded by the mining corporation itself. They had alleged that the Aboriginal authorities had informed that Groote syndrome was around as long ago as the 18th century. Whose observations would you trust?

I returned back to Angurugu little the wiser. Much of the manganese dioxide was going from this mine for incorporation into products that were being manufactured all over the world - bricks, steel, aluminium/uranium alloys, dyes, batteries, paint pigments, animal feed minerals and fertilisers - other industries whose workforces have been associated with a raft of clusters of these same types of neuro-degenerative disease.

In the afternoon, we went out yamming in the rain forest. The traditional Aboriginal custom of yamming can almost be likened to a religious ceremony. It entails parties of woman working the woodlands to track down the particular species of vine that nourishes the edible yam. I felt honoured to be able to push Roseanne out to the woods in her wheelchair - a skeletal 33 year old victim with a stunningly beautiful face. Like all Aboriginal people, she just accepts her fate. No self pity, just a Buddhist way of tolerating and living with her condition. I secretly wanted to steal her back to the UK and somehow get her right again ! I could feel her pain; a few faded traces of red nail varnish still smudged across her nails, as though she had just about given up her final hopes of getting married and living some semblance of a normal Aboriginal lifestyle. The other women brought the crowbars, hatchets, and spades for digging and extracting the yams; whilst Gayangwa’s 9 year old grandson was scuttling around, monkeying through the mangroves with his machete, pairing back spearheads from the saplings in order to give a poor tree snake hell - the one I had just seen coiled up a tree.

It was a kind of spiritual experience working with these people. The younger girls silently scouting around the forest floor with pickaxes, whilst Gayangwa was striding around forever staring upwards, surveying the tree canopy in order to pinpoint any tell tale signs of the edible yam. I began to wonder how she was not hypnotised by the arcs of sunlight strobe-scoping their way down the stringy backs to the forest floor. Where were those withered vines that bore the crisp, heart shaped leaves of the edible yam? The breeze caught the leaves, their flipsides flutter-valving out a kind of mantra of the forest floor. There were many false alarms. Our harvest was proving hard to find. Every so often Gayangwa had to break off her concentration to scold her grandson who was tarzaning across our tracks clinging onto an entanglement of extra tough vines.

After about half an hour, one of the girls called across in Aboriginal language. I soon got the gist that she had found one; a scorched up vine which trailed downwards, going earthbound beside the roots of a mangrove trunk. After alternate digging with the crowbar and then scratching the soil out with our bare hands, we eventually uncovered the first sightings of the yam itself - laid out right across the backbone of the manganese bedrock. As we dug around the rest of it, I got embarrassed by my ineptitude, since I had sliced the spade straight through the middle of the tuber - its sap already exuding from the bruising!

I was interested in yams, because all of the victims who I had questionned had consumed them in high quantities. And analytical tests already conducted had revealed manganese at excessive levels of 1000 ppm in the yam roots. The women were telling me that the yams would make you itch all over if you ate them uncooked. This made me wonder what other toxic substances could be lurking in their tissues - some allergic photosensitising agent perhaps? My enthusiasm and desire to investigate these issues further immediately reminded me of my total lack of funding resources and inability to take this whole research any further forwards - until I had some firm offer of funding. This was very frustrating.

As we left the forest, I could see the poor helpless Roseanne waiting back at the trackside for us in her wheelchair - in desperate need for some line of hope. God, at her age, she deserves it, surely?. My anger surged again, as I remembered the absurd, irrational and totally unscientific reasoning behind the British Ministry of Agriculture’s rejection of my proposal for a three year grant funding project - which their minister had invited me to submit in the very public forum of a BBC film. This project could have advanced some major discoveries/developments into the causes and prevention of these diseases - for a minute percentage of the two million pound grant award that our government had advanced to the various ‘tame’ professors for re-assessing their quesstimates of the future incidence dynamics of the vCJD epidemic - an epidemic which never really came! What useful purpose did that research study serve?

One of the reviewers of my proposal had misread the number of samples that I had proposed for each cluster location - by twenty fold less - and accused me of proposing too few samples per cluster location, thereby rejecting my application as scientifically invalid. If this had been true, you could merely increase the number of samples to be taken, surely? The Ministry’s intransigence was beginning to betray an agenda.

But despite my pointing this major error of the reviewer out to the Ministry, they blindly ignored my protest and continued to highlight this guy’s review as the key criticism - later inviting that particular reviewer onto their expert TSE surveillance panel. Their review got worse still; splitting hairs over the fact that I had used the term "slice" of soil when referring to the section of soil that is dug out with my sampling trowel! One of the reviewers actually asked what the word "slice" meant, despite widespread use of this term in the ‘gospel’ of soil sampling guidelines decreed in the Natural Resources Management Ltd instruction book . NRM are the most reputable sampling lab in the UK! Having been falsely accused of not including soil pH, redox potential in my analyses, the Ministry also disapproved of my intention to use small cardboard boxes for holding the soil samples - the very boxes supplied by the NRM!

Well, I suppose I should have learnt my lesson by now that the big brotherhood of Ministries and multinational corporations like to hide their mega manganese interests behind farcical disputes over the suitability of cardboard boxes or petty terminological confusions surrounding soil slices. But how do they have the heart to place these fastidious nit-pickings in front of the welfare of this crippled young girl? Don’t they have children themselves?

As my anger eventually drained itself out in the heat of that tropical afternoon, I stopped myself short of getting into imaginary spear and machete attacks on the Ministry of Agriculture’s offices back in London! Were the high concentrations of manganese beginning to get to my very own serotonin receptors by now, I wondered?

I got up at 5am to be sure of collecting all of Warren’s and my own baggage and getting us to the aeroplane on time. In the half light, I found Warren trying to crawl helplessly across the veranda of the Lalara’s family home to reach to his wheelchair. His silhouette reminded me more of an injured stick insect than that of a crawling human. Warren obviously felt deeply humiliated by my arrival at such an embarrassing moment; so I had just laughed to put him at ease, pretending that I had not really noticed his predicament, then got on with assisting him to his legs.

The final hour on the island had come. We were returning back to Darwin. Despite some indirect encounters with the extreme violence of this community, I was still feeling saddened at having to leave some of my new friends .

The airport terminal was just an open sided hut of a building and I was pleased to discover that security wasn't quite as tight and time consuming as I had encountered at Washington Dulles post Sept 11th - otherwise we would have missed the plane! 

Some of the Missionaries and the Aboriginal folk were already gathering around to say goodbye. I was hoping that they were not building up too many false hopes in relation to possible outcomes stemming from my visit - cures, etc. After all, I had not, as yet, been able to secure access to post mortem brain material from any victim who had died of Groote syndrome. The ball is in the court of the Aboriginal community here, for it is imperative that they waiver some of their beliefs over the sanctity of the body after death in order to permit the release of some brain sections - tissues which urgently need to be analysed for levels and valencies of metals, antioxidant enzyme activities, ataxin 3/prion protein status in order to advance this research programme forwards.

If you can obtain evidence of cause, then you can devise controls, prevention and cures for this horrendous disease. But up until present day, all post mortem tissues have been under the reductionist control of the genetic-only brigade (funded by the mine corporation!) who are only really interested in viewing the brain material in respect of confirming a diagnosis of the exotic "Machado-Josephs" mutation, and no further. Its more about academic prestige than getting to the root of the problem and sorting out solutions.

One of the main stumbling blocks of modern day specialist research programmes- regardless of the disease under investigation - is that they invariably home into a single metabolic fault as the sole causal candidate. They are failing to examine the overall holistic picture surrounding the aetiology of a given disease. Research should consider the multi-factorial possibility that several cell lines, enzymes, proteins or metabolic pathways might need to be simultaneously disrupted in order to bring about a specific disease condition.

For example, the dysfunction of the prion protein has been heralded as the ‘be all and end all’ of the CJD disease process. And then the dysfunction of the beta amyloid and tau proteins are considered to lie at the heart of Alzheimer’s disease. Now we are being told that the dysfunction of another protein, called ataxin 3 , lies at the heart of Groote syndrome. Whilst it is true that the disruption of these specific proteins may well represent some key hallmark of a specific disease process - thereby acting as a useful diagnostic marker for that disease - it is counter productive to disregard all of the other metabolic disturbances associated with a given disease as irrelevant, on grounds that they cannot be concisely explained by the ‘flavour of the month’ hypothesis. Such a blinkered approach can only hinder the healthy evolution of our scientific understanding of that disease

Given the diverse range of symptoms and pathological damage involved in Groote syndrome, it seems unscientific to attempt to relate all of these complications back to a single mutation in one brain protein - ataxin 3. In this respect, I feel that a multi-factorial causal hypothesis which jointly implicates manganese intoxication/magnesium deficiency can account for all of the metabolic disturbances, symptoms and pathology expressed in Groote syndrome victims - inclusive of the all important ataxin 3 mutation.

I had managed to persuade two of the foremost metal and protein analytical labs in the world to look at brain material from deceased Groote victims; thereby opening up further possibilities of unravelling the causal riddle of this mystery disease. In order to pinpoint the precise metal imbalance burdening the brains of Groote syndrome sufferers, then access to this brain material was an absolute necessity. Once the evidence has been established for cause, then it is possible to work out preventions, controls, and, more importantly, cures.

Given that another victim of Groote syndrome had just died, it is imperative that the Aboriginal community authorise release of this material in order to accelerate the prospects of a solution to their escalating health crises. The researchers who I had contacted were perfectly willing and happy to return all tissues after microscopic surveillance/analyses has been carried out.

Despite the indirect monopoly of the mining corporation over all current research programmes investigating the origins of Groote disease, zero progress has been made in respect of the victims’ interest. Groote syndrome is increasing at an unprecedented rate. After an initial consultation at the health centre, victims are just sent home to endure a humiliating, slow, protracted death. They are told that there is no cure. They are abandoned, full stop. If it wasn’t for the excellent physical and spiritual care offered by the Anglicare Mission in Angurugu, the Aboriginal community would be left with no one other than themselves to care for their victims’ interests.

One way of resolving the whole problem is to abandon the entire village of Angurugu, and resettle the residents a few miles away in a new village sited away from the mining activities and the manganese rich bedrock. This advice was published in the 1980s but totally ignored.

The other approach is to start treating the victims for manganese intoxication. In collaboration with Warren’s wife, I had made several abortive attempts to coerce GPs in Darwin to treat Warren with a course of manganese chelators. Whilst it is unlikely that any chelating treatment could actually reverse Warren’s symptoms at such a late stage in the course of the disease, at the very least it is possible that chelators might arrest the disease process. Furthermore, I had provided evidence in the form of published studies of successful chelation therapy with manganese intoxicated miners. So why is no one prepared to treat Warren?

However, despite the cynical comments from one or two nurses at the medical centre, we managed to get Warren onto daily supplements of magnesium citrate tablets. After three weeks of taking the tablets, Jenny reported that his intensely painful muscle spasms had ceased. This improvement was a godsend to Warren, and had enabled him to start sleeping again through the night, as well as improving the functioning of his digestive tract, etc. So, at the very least, these improvements following magnesium supplementation had indicated that magnesium deficiency could account for some facets of the clinical/biochemical profile of Groote Syndrome.

After the farewells and the usual hilarious problems of manhandling Warren up the steps into the plane, we took off from the island. As we flew over the mine, I could see the Goliath shaped ore crusher amidst the black oceans of the manganese ore bed - scarred right back to the frontline of the rainforest. 

The dozers had been rapidly advancing to meet the recent spate of increased orders for manganese dioxide from the western world. At the same time I thought of the rising incidence rate of neuro-degenerative diseases around manganese processing industries in the West, as well as the ever increasing rates of mad cow disease in European cattle who were being fed exceptionally high concentrations of this mineral at an early age. Did the fruits of this island sow the seeds of madness in our cats and cows, our deer and elk, our mink and goats, and, more importantly, in our death row murderers or our innocent teenagers who contracted vCJD, etc? I do not think that anyone can answer that question just yet.

At Darwin I handed Warren back to his partner Jenny, said my goodbyes wondering whether I would ever get to see them again, and took my return flight to the UK. At the x-ray barriers, I cracked a few jokes about my metallic samples of manganese rock tripping off the alarms. The security officers were not too impressed with my humour, since manganese oxide is a component of some explosives! If I had been in the US, their security officers would have equated a crime of concealing manganese in your pockets as being equal to a crime of having manganese in your brain, and the officers would have thrown me onto ‘death row’

Considering the more laid back approach of the Aussie officials, I took the opportunity of asking the officers at the customs point if they would confirm or refute several reports that had come my way nearly two years back. These reports had stemmed from UK farmers and vets visiting Australasia up to six months prior to the official announcement of the outbreak of foot and mouth disease in the UK. They had all reported how they had been exclusively subjected to a thorough disinfecting/cleansing treatment when visiting Australasia at that time. Some had questioned officers over the reasons for the cleansing , and one farmer was told how UK livestock farming was sitting on a time bomb which Australia wanted to avoid. But no more clues were given.

To my surprise, the customs lady answered me openly saying that they had known full well about the foot and mouth disease problem brewing in the UK, well in advance of the date of the official announcement in the Uk. She could clearly remember the UK’s briefing sheets to them during the autumn of 2000. "The pommy government has always been really good over informing us about impending infectious disease crises in good time. It is the Chinese lot who never bother!".

As I walked onto the plane, I wondered why the British government had not told their own livestock farmers before anybody else! This would have enabled us all to work cooperatively to prevent the spread of the disease five months sooner than we actually did. I wondered whether this revelation from my Aussie customs informant betrayed the fact that our pommy government had no real intention of halting the spread of the foot and mouth disease. Their negligent inaction confirms this suspicion! Furthermore, their deliberate failure to address the true cause of BSE - since Cambridge University studies in 2000 showed that manganese can cause the prion protein to transform into its BSE causing form - is equally negligent.

But I suppose the deviant and delinquent behaviour of the UK government towards their own people’s interests is all part and parcel of the global and European (agenda 2000, etc) totalitarian diktat to reduce livestock numbers at whatever cost - to make way for the increased consumption of multinational controlled GM soya sources of protein?

On the aeroplane, I got out the realms of bulky research papers that I had collected during my field trip, and set about formulating my own conclusions during the long haul flight home.

I read the papers from both sides of the controversy. The excellent pioneering manganese studies on Groote by Mark Florence and John Cawte during the 1970s/1980s. And then the later studies at the Menzies School of Health Research during the 1990s, which launched the theory of an inherited ‘ataxin’ mutation as the exclusive cause of the disease - which they had termed ‘Machado-Josephs’ disease. In one sense, I felt that both parties were partly right, and, in an ideal world, should have merged together to thrash out an overall multi-factorial conclusion on the cause of this disease.

In this respect, my own conclusion was beginning to gel. It encompassed both sides of the aetiological fence; that a combination of manganese intoxication/magnesium deficiency had caused the mutation as well as the host of other metabolic complications that were evident in Groote Syndrome. And furthermore, the Aborigines were particularly susceptible to this disease due to some, as yet, unrecognised genetic weakness factor, along with the fact that they had thrived off a food chain (yams, crabs, fish, etc) in an environment that demonstrates excessive levels of manganese and deficiencies of magnesium. Furthermore, Aboriginal people use exorbitant quantities of salt on their food, which further impairs the uptake of magnesium across their gut wall.

On top of this, the Aboriginal folk who live in Angurugu are chronically exposed to the airborne manganese dust that continually blows across their village as a result of the operations of the adjoining mine.

A few weeks after arriving back in the Uk, the results of my soil/vegetation and water analyses on Groote came back from labs. This data completely substantiated the earlier work carried out by Mark Florence and John Cawte - that manganese was excessively high and magnesium very low in both the soils and the traditional bush foods of the Aboriginal people of Angurugu.

In the batch of soil results, manganese had panned out at an astronomical minimum of 84,196 ppm and maximum of 216,943 ppm in the soils of the mission gardens at Angurugu - where the Aboriginal people used to cultivate their food.

Whereas the manganese levels in the soils back at the Emerald River Mission gardens - where the Aborigines lived before Groote syndrome had emerged - had averaged out at 2,081 ppm. Magnesium was very low in the soil of all areas tested on Groote, averaging out at .14.

The analytical data that covered the analyses of the vegetation and foodstuffs was equally compelling. Yams dug from the Groote syndrome area at Angurugu yielded excessive manganese levels at 1351 mg/kg, whilst Yams dug from the disease free area of Bickerton island yielded just 29 mg/kg.

Iron and aluminium were also high in the Angurugu Yams at 1332 ppm and 629 ppm respectively, whilst their levels only yielded 100 ppm and 49 ppm in the disease-free Bickerton Island Yams.

The Pandanus and cycad did not demonstrate particularly high levels of any toxic metal, except a slightly elevated level of lead and zinc in the Angurugu cycads at 7.2 mg/kg and 93 mg/kg respectively, whilst levels were less at 6.3 and 39 mg/kg in the cycads drawn from disease free regions.

Magnesium was depleted in all bush foods, averaging out at 0.2 % w/w in all types of vegetation tested.

Mark Purdey - November 2002

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