Gosio's Disease/SIDS/SBS/CFS Cover-Up

[Guest guest]

I put my story in the bmj and described the " mycotoxin connection "

between SIDS and CFS as being mediated by potentiated toxins from

common molds - and got not one single response.

I stated that the refusal of the medical establishment to

investigate the mycotoxin connection constituted " criminal medical

malfeasance " and failed to stir the slightest interest.

I even put this story in front of the SIDS parents who have spent

years fighting their conviction of murder and Munchausen's Syndrome

By Proxy - and they STILL fail to see that viewing the the SIDS

phenomenon from the perspective of " The Hypothesis "

provides astonishing answers to " unexplained phenomena " such as SBS

and CFS.

What does it take to get through to people if words will not

suffice?

-

http://www.purdeyenvironment.com/cotdeath.htm

The Guardian Weekend : Saturday, April 1st 1995

Inside Story: Bob Woffinden

Seven years ago Barry came up with what remains the most

persuasive explanation of cot death. It makes far more sense than

the latest theory - that the syndrome is caused by smoking. So why

is his work ignored or condemned?

Who can now tell what causes cot-death? There have been four major

television programmes dedicated to the subject, along with huge

amounts of radio and press coverage. And all we have to show for it

are many conflicting theories and lots of contrasting information.

Or so it would seem. You'd hardly guess it from the nature of the

publicity, but there is one single explanation for cot-death that

makes complete sense. The dense fog that presently surrounds the

subject is not the result of academic and administrative

uncertainty. It has all the hallmarks of a deliberate smokescreen.

The authorities may appear to be as mystified as the rest of us. But

there is no reason to believe that they are.

This would be serious enough even if the matter were not so tragic.

But no one can ever overestimate the family tragedy of a cot death.

The grief remains forever. So does the unsettling anxiety - the

wondering whether, in some obscure way, parents could themselves

have been to blame. They should be relieved of this burden, not have

it reinforced.

Cot death had not always been an inherent danger of parental life.

It was first described as a medical phenomenon by Dr A M Barrett in

1953. He estimated that unexplained infant deaths then were three to

four times what they had been a few years earlier, and that the

additional numbers occurred mainly in sleep.

Queries were naturally raised about the historical perspective -

perhaps cot death had never previously been noticed, monitored or

recorded - but by the end of the Sixties, the consensus of

scientific and medical opinion was that there had been no comparable

casualty rate before the war. And in 1969 the US paediatrician, Dr J

B Beckwith, proposed the term Sudden Infant Death Syndrome - SIDS -

to describe the phenomenon.

Pathologists in Britain had previously been reluctant to diagnose

cot death. They felt it implied some inadequacy on their own behalf,

and also compounded the distress and bewilderment of parents. But by

the late Sixties coroners started to record SIDS with confidence,

and the figures had become reasonably accurate by 1980. From 1986-

88, as cot death peaked, approximately 1,500 babies were dying

annually in England and Wales, all in the same mysterious way. They

showed no symptoms of illness, just suddenly capitulated, displaying

no outstanding pathological features. No one could doubt that it was

a medical issue of critical importance.

Though especially acute in Britain, the problem was not confined to

this country. There were cot deaths in the US, Australia and New

Zealand and throughout Western Europe. However, there appeared to be

nona in China, India, parts of Africa or Japan. Yet Japanese

families in America suffered cot death at the same rate as the rest

of the population. A number of international conferences were held,

and a variety of academic projects set up. But the research seemed

to be getting nowhere, and the deaths were increasing.

The Wedding in Winchester of Barry 's daughter Sue on

September 17, 1988 did not, at the time, seem a significant turning-

point in the investigation of cot death; nor is it currently

perceived as such. But history may exercise a more prudent judgment.

For the occasion of his daughter's wedding, hired a

marquee from a Rotarian friend, . The latter took the

opportunity to ask 's advice. He explained that the

manufacturers were having problems with the biodeterioration of the

reinforced PVC fabric used in marquees. Although designed to last

for years, they often looked unsightly after a short period.

was the ideal man to consult. He had spent most of his

professional life working on the deterioration of materials and

associated health risks. It was work on which his father had been

engaged in the Thirties, and had taken a general science

degree (embracing physics, zoology, biochemistry and physiology) to

enable him to pursue it further. He had set up his own practice as a

consulting scientist in 1965.

He was able to provide the answer. He explained that the

degeneration of the marquee fabric was due to fungi. At a later

meeting, one of the Austrian manufacturers commented that if the

problem was really that straightforward, he'd simply increase the

amount of fungicide.

" The deterioration was so severe that it hadn't occurred to me that

a fungicide was present, " recalled . " But I warned against

increasing the amount. This particular fungicide, OBPA, is an

arsenical compound. I knew that when you have active fungal

deterioration there is a danger that the fungus can convert the

fungicide into toxic arsine gas. "

The PVC manufacturers listened politely, but seemed to consider this

cautionary warning little short of loopy. didn't know

who to believe. He decided to try to reconcile the situation by

telephoning the fungicide manufacturers. They returned his call the

same day. They told him that his friend was talking absolute

nonsense. OBPA was perfectly safe. Indeed, it was so innocuous that

it was even approved for use in cot-mattress PVC.

spent a sleepless night, and telephoned at

breakfast-time. He asked whether there was any possibility that

fungal deterioration and the production of toxic gases could

conceivably be linked to cot death. replied that it was a

possibility. He even knew which fungus could be involved.

The notion that deaths might be caused in this way was not new. In

the 19th century, a number of fatalities occurred because of arsine

gas generated by a fungus, now known as Scopulariopsis brevicaulis,

growing on wallpaper containing arsenical pigments. It is now

generally considered that Napoleon died on St Helena in this way.

The mycological mechanism was ultimately identified by an Italian

chemist. The syndrome was named after him: Gosio's Disease. At the

turn of the century, a number of infant deaths in England were

attributed to this. Lord Salisbury's Conservative administration set

up the Royal Commission on Arsenical Poisoning, which in 1904

reported that arsine poisoning was difficult to diagnose and was

probably undetected in many cases. As late as 1932 however it killed

two children in the Forest of Dean.

's hypothesis fitted in with one observation. At the start

of the Eighties, parents were warned not to overwrap their children.

This had some success in reducing the death-rate; but overwrapping

itself was obviously not the cause, otherwise Innuit people would

have suffered an abnormally high rate of cotdeath. However,

overwrapping could simultaneously trap the toxic gases and cause

overheating, thereby generating more gases more quickly. .

Would the theory be borne out in practice? resolved to

examine the issue. No one was paying him to do the work, but the

urgent need to save lives overrode other priorities.

wrote to all coroners in England and Wales, asking if he

and could be supplied with actual, cot-death mattresses.

Hampshire and other police forces lent generous support, and more

than 200 mattresses were delivered to Winchester for analysis at

's laboratory in Guernsey.

The first part of the experimental work was easy. All the mattresses

were contaminated with scopulariopsis brevicaulis, particularly in

the areas exposed to the warnth and perspiration of the baby. Yet,

no one could detect the arsine gas that had anticipated

fmding.

'We did notice that those of us doing the lab work were suffering

headaches, " ,explained . " I was teasing my chemist, saying

he obviously wasn't competent. He replied, 'Well, you will give me

these complicated jobs, looking for arsenic in the presence of so

much phosphorus and antimony.' And then it all clicked. This fungus

was working on phosphorus and antimony compounds.We immediately

repeated the tests, looking instead for phosphine , (from

phosphorous) and stibine, (from antimony) gases - and we found them

straightaway. "

In fact, arsenic - with one important exception - was not used in

British mattresses. But arsenic, phosphorus and antimony are

adjacent Group Five elements in the periodic table, and react

similarly. Phosphine, stibine and arsine are exceedingly dangerous

trihydride gases (stibine is 1000 times more toxic than carbon

monoxide) which act as anti cholinesterases - like organo-phosphorus

insecticides - and to which infants are very sensitive.

Anticholinesterases in the blood cause cardiac inhibition. The heart

beats slower and slower until it stops altogether. It was a wholly

logical explanation for SIDS.

The poisoning action would leave no visible signs, but was

consistent with the recorded observations. If this was real1y the

solution then, 36 years on, Barrett's original observation in 1953

made perfect sense: PVC cot mattress coverings were introduced in

1948-49, and fire retardants were first put into them in 1951.

From 1953 onwards, the deaths appeared to rise steadily until they

significantly increased in the mid-Eighties. To enhance fire safety

precautions, the Department of Trade and Industry (DTI) brought in

the Furniture and Furnishings (Fire Safety) Regulations in 1988, but

had given industry four years' advance warning of their

implementation. Under DT1 pressure, all companies had put increased

amounts of fire retardants into furnishing materials, cot mattresses

included, over the previous four years.

's finding explained virtually, all of the cot-death

mysteries. In two cases, families had decided at the last minute to

stay overnight with friends. In each case, their baby was placed in

the cot of the hosts' older child. The latter, by using the mattress

daily, had activated the fungus which liberated the gases. The child

had been strong enough to withstand the toxic effects; the baby had

not.

It also explained why lower-income and single parent families were

especially vulnerable, as they were more likely to use older

mattresses on which the invisible fungus was more highly developed;

and why there was no cot death in Japan, where cotton futons were

impregnated with boric acid, a safe fire retardant.

was urged to contact the principal charity in the field,

the Foundation For The Study Of Infant Death (FSID). In May 1989, he

addressed its scientific advisory panel. He'd modestly imagined that

he'd be congratulated on his work. 1 really thought I'd then be able

to leave them to get on with the jab. But theydidn't seem interested

in initiating new research projects. " The FSID subsequently

dismissed 's work.

wanted urgently to alert the public to the dangers. He

considered that the scientifically responsible way to do this was to

publish his results in the British Medical Journal. The publicity

generated would, he felt, perform the vital function of warning

parents.

The late Sir Gibson, a former chairman of the British Medical

Association Council, warned him that the BMJ was more interested in

medical politics than advances in medical science; but it still came

as a thunderbolt when the journal, having sent his paper for peer

review, rejected it.

The BMJ explained that the piece had been rejected because of prior

publicity; countered that he had warned them that they

were taking too long to assess the paper, because the story was

bound to break. It hadn't escaped the attention of the local media

that police were delivering baby mattresses to his premises; and

reporters were in no mood to wait.

wanted to avoid uninformed scaremongering. He contacted

the reporter , of You And Yours, knowing the Radio 4

programme was one of the few which would allow him adequate air-time

to explain his theory. He and set a date for broadcasting the

cot-death solution: June 6 1989. But on the night before the

programme was to be aired, it became obvious that it had leaked.

During the night, was disturbed by phone calls: Would he

do an interview for the Today programme? He explained about his

arrangement with You And Yours, but Today ran the story anyway,

prompting news bulletins all morning. You And Yours, recognising

that its more considered piece had been pre-empted, dropped the item.

The vast majority of the newspaper follow-up to the programme

focused not on the story itself, but on the development which

ensued: the official rubbishing of it. When asked to comment,

several medical researchers said that was only a

materials scientist, with no knowledge of cot death. The BMJ

belatedly entered the debate, upbraiding for " clearly

breaching a principle that most medical journals subscribe to, " and

not first submitting his thesis to scientific scrutiny.

was accused (as, later, was The Cook Report) of fomenting panic

among the general public; but the real panic seemed to be engendered

among administrators, desperately trying to absolve themselves of

responsibility; and academics and other professionals.

At this juncture, however, still hoped that government

officials would treat him disinterestedly and heed his warnings,

especially his advice to use new mattresses and lay babies on their

backs. Some hope. and had first outlined the

theory to the Department of Health on January 11, 1989. They

received a reply on February 22 from Dr Lister Cheese, senior

medical officer, who politely explained.that the hypothesis did " not

stand up to scientific scrutiny " .

" This was astonishing, " said . " The process that I was

describing was in all the industrial mycology handbooks. Had they

even bothered to look? "

MPs - among them Sir Dudley , Nigel Griffiths and Sir

Price, who maintained a continuous correspondence with the then

junior health minister, Virginia Bottomley - were prompted to ask

parliamentary questions. The Government reacted by commissioning

work from the Laboratory of the Government Chemist (LGC).

Frustratingly, the LGC was asked merely to repeat and confirm the

work already done, then was incapable of carrying out the work

anyway. 'We had warned them about the sensitivity that was required,

but they didn't take that into account at all. They couldn't detect

anything. In fact, one member of their staff was able to do the

tests properly in our lab, but not in her own. "

In February 1990, nevertheless, and were invited

to a meeting with the chief medical officer, Sir

Acheson. " One of the things that shocked me about that meeting was

that he hadn't been properly briefed by his staff. All he knew was

what we'd said over a year earlier. He had none of the more up-to-

date information. "

The following month, nevertheless, Acheson gave a press conference

to announce that a group of independent experts would examine

's hypothesis. He added, however, that he himself did not

believe it, and that there was no need for parents to take special

precautions.

The inquiry was headed by Professor , of St Bartholomew's

Hospital, London, the chairman of the Government's advisory

committee on toxicity. With urgency of the essence - one would have

thought - the report was finally produced 15 months later, in June

1991. The inquiry found the hypothesis " unproven, through

lack of any independent supporting data " - a somewhat unsurprising

conclusion as the group had not carried out investigations which

might have supplied the supporting data.

But a year earlier, Dr Neil Ward, of the trace element unit at

Surrey University, had done some blood analysis, and discovered that

the antimony level in six cot-death victims was four times the

normal maximum. This was the scientifically-proven link between the

escaping gases and the poisoning of the baby. It seemed to confirm

's theory.' Tests on tissue samples of cot-death victims

were as obvious as they were essential. The inquiry had not

commissioned any.

's theory had met with a sceptical response from the

official cot death organisations, from scientists working in the

field, and from the Government. Despite that, some independent

observers were highly impressed. He had reported to the British

Society for Allergy and Environmental Medicine (BSAEM) in Buxton in

July 1990, and been grateful that his ideas had at last reached a

comprehending and appreciative audience. Also, the Lancet had by

then published material and correspondence outlining and discussing

his work, and the Journal of Environmental Medicine published the

first full account.

Tomy UK Ltd, the Japanese-owned toy manufacturer, then offered a

grant to enable to research all the worldwide cot-death

literature. " This was extremely successful. It showed that the work

of cot-death researchers was consistent with what 1 had found, and

retrospectively explained some of the seemingly wilder hypotheses.

For example, there was a suggestion that junior aspirin caused cot-

death. You could see how this misapprehension had arisen. The first

sign of the poisoning is a headache. A baby would thrash around,

disarrange the bedclothes and save itself. But if a concerned parent

administered aspirin, then the child didn't have the headache, so it

died of poisoning. The finding, although not understood at the time,

was obviously consistent with our hypothesis. "

It is startling to recall that at this time of fervent interest in

the matter, the Department of Health had learned nothing and done

nothing. On August 8 1991, Baroness Hooper, parliamentary under-

secretary of state for health, explained that " the chief medical

officer did not agree with Mr over the use of new

mattresses or the prone position for babies " . At that time, the

Department of Health dismissed the idea that any particular sleeping

position could be advantageous, and the FSID concurred with this

approach.

One of those who sadly died at this juncture was Sebastian, TV

presenter Anne Diamond's child. In the wake of the tragedy, she

became a zealous and astute campaigner. She quickly realised that

New Zealand had achieved some success , advocating avoidance of the

prone sleeping position, and that this advice was corroborated by

Professor Fleming, of the Institute for Child Health. It was

only her expertise at generating media interest, and the impending

transmission of This Week (Thames), the first cot-death programme,

that finally shamed the department of Health into accepting her

suggestion. On October 31,1991, the Back to sleep recommendations

were announced.

The campaign had a clear message: if babies were put to sleep on

their backs, they would be safer. Yet it was evident it that the

sleeping position could only be a secondary factor; after all,

babies had been sleeping every which way for centuries. When the cot-

death statistics could be analysed, some time later, it could be

seen that this initiative had reduced the cot -death rate by about

40 per cent. This is something for which the Department of health,

suddenly overlooking the years through which it had been offering

totally contrary advice, claimed great credit.

The Department neglected to point out that the figures revealed

something else: there had been a significant drop even before the

Back-To-Sleep campaign. Could the reason for this have been the

publicity, albeit limited, which 's original announcement

of the cause of cot-death had attracted, and the precautions which

parents had taken? Lives had been saved during this period not

because of the Department of Health, but despite it.

There was soon a third factor at work. completed his

research and, before moving on to other work, pubished his report,

Cot Death: Must Babies Still Die? in November 1991.

By this and other means, manufacturs had been alerted to the risks.

They changed the composition of the fire-retarnt materials, leaving

out antimony.

This has never been publicised. If a company openly stated that it

had changed the composition of the chemicals to make mattresses

safer, there would be automatic inference that they hadn't

previously been safe - and thus the company would be vulnerable to

legal actions. One of the leading companies did, in fact, put

together a major advertising campaign stressing the newly-enhanced

safety of its mattresses - but aborted it, presumably on legal

advice.

By this stage, the SIDS figures had declined greatly - there were

only 442 iths in England and Wales in 1993; but it was 442 too many.

It was against this background that The Cook Report was transmitted

on November 17 1994. With some deliberation, The Cook Report was

entitled, The Cot Death Poisonings. Central TV commissioned

independent laboraies to do the tissue analysis that the

inquiry had neglected to undertake (including samples from Anne

Diamond's baby); and mattress analysis, to establish whether one

related to the other. Concluding that they did, the programme then

outlined the theory explored above.

The tabloid press responded with enthusiasm to this fresh

investigation. Very quickly, however, the atmosphere changed. Dr

Colin Morley, of Addenbrooke's Hospital, Cambridge, was one of the

first to dismiss the programmers' findings. Soon, the re-publicised

theory was being assailed from all directions, as the press

performed one of its characteristic U-turns.

Dr Calman, who had replaced Sir Acheson as chief

medical officer in September 1991, described the research as

1imited, inadequate and flawed " . Virginia Bottomley, Secretary of

State for Health, urged television producers to " have formal

consultations with experts from the Department of Health " before

making programmes that could arouse public alarm.

The assault on 's credibility, so reminiscent of what had

happened in 1989, was briefly halted when The Cook Report

transmitted a second programme, two weeks later. Fresh research

compared antimony levels in the hair of children and their mothers,

and discovered that the children were exposed to much higher levels.

Since the mothers were inhabiting the same general environment, the

most plausible explanation for the disparity was whatever babies had

been exposed to in their cots; and that had been established by

analysis of the mattresses. Dr Calman immediately announced a fresh

inquiry, to be chaired by Lady Limerick, vice-chairwoman of the

Foundation for the Study of Infant Death.

It seemed strange that the inquiry was being chaired by a

representative of an organisation which had already rejected

's work, but the media did not raise this issue.

Throughout, the journalistic response to this saga has been

excitable and poorly-informed, with the shallowness of news reports

all too evident.

In the BBC's QED, made by MacDougall Craig Productions, and

transmitted in March, there were a number of separate, fresh strands

of research which, ostensibly, cumulatively demolished the fire-

retardant theory. The ish Cot Death Trust had commissioned work

on antimony levels found in the livers of cot-death victims and a

control group of babies who had died of other causes. No significant

difference was perceived between the two groups.

However, there seemed to be confusion between chronic poisoning,

which could be measured by deposits in the liver and acute

poisoning - which would cause SIDS, and would not be measured in the

liver but in serum or lung tissue. QED commented at length on

antimony in hair, but without drawing comparisons with other members

of the family. Second, research in Bristol found that PVC mattresses

were safer to sleep on than other forms of bedding. This was

presented as a refutation of 's work. Yet the mattress

itself never caused problems - it was the chemicals within, many of

which have been eliminated from children's bedding since 1991. Thus,

this line of research was irrelevant. Third, we are now all asked to

believe the fresh theory: that SIDS can be attributed to parental

smoking. Here, at last, is a perfect theory for the government, one

which absolves it of all responsibility and blame.

It is axiomatic that no parent should smoke in the same house as any

child, let alone a new-born baby; but to suggest that smoking is a

significant cause of SIDS is questionable. If there were bona fide

epidemiological evidence to support this, it would have been

discovered long ago. In fact, anecdotal evidence tends to undermine

it. Oakley, who helps to organise a cot-death support-group in

Plymouth, told me that " we're in close contact with nine cot-death

families, of which four are non-smoking " . Woods, of the London

solicitors s Innocent, is on the steering committee of legal

firms bringing an action against the Government " for failing to

discharge its public duty to protect health and safety " , and is

compiling a register of non-smoking households in which cot deaths

have occurred.

If smoking were linked to cot-death, then one would have expected to

see high cot-death rates in Britain in the Thirties and Forties,

when smoking was fashionable and widespread. There was, however, no

cot-death at that period.

Similarly, one would expect to see particularly high levels today in

southern European countries like Spain and Italy. This is not the

case. In Russia, smoking is prevalent but cot-death non-existent;

conversely, in America, fewer and fewer households are smoking, yet

cot-death remains a serious problem.

Although 's work continues to be repudiated by scientists

in Britain and, especially, the United States, it is clear both that

the death-rate has been falling since his theory was first

propounded, and that current research - with the figures thankfully

way below the 1988 peak - can shed only limited light on the

situation then.

The cot-death trail is a familiar one: at the outset, moral

cowardice and an administrative unwillingness to take responsibility

for actions; and then, fullscale bureaucratic obfuscation, as it

becomes more important to cover up the cover-up