Dec 2010

Friday 24th December 2010

 The holiday season is a time for being with our families and friends relaxing in their company, sharing, caring, making memories and laughter. Whatever our religious beliefs or faith this time of year gives families and friends the opportunity to stop work and spend precious time together.
Across the UK and our global communities for families nursing victims of vCJD and those affected by the disease this time of year has a terrible poignancy and heartbreak. With this blog is a photo of one of the current victims here in the UK 23 year old Irhad Durakovic and his devoted mother Indira.
I recently visited them at their home in London, Irhad was a graduate at Thames Valley University, had a private pilots licence, was an air cadet and was hoping for a job in the aviation industry. At 6ft 4inches tall, healthy,  handsome, musical and talented he had a wonderful career and life ahead, his mother showed me proudly his awards and talked about her intelligent and loving son.
Irhad arrived in the UK late 1992 with his mum, fleeing the war in Sarajevo…for peace and a better life. Instead Irhad ingested BSE material from our food and medicine chain and now he is bed bound, cant talk, is fed by a tube and is nursed devotedly by his mother 24/7.
As Indira told me ‘ The Uk Government is killing my son, food and medicine should have been safe. I cared for my son made sure he ate wisely he is my world ‘ she continued’ I want those responsible punished…why has this never happened?
The war in Bosnia  killed my only brother, Irhad and I were afraid for our lives…we escaped shelling, bullets and at times it was very frightening….but I can honestly say watching and nursing my son these last months…..that vCJD is far far worse……’.
Indira is another heartbroken mum……whose son’s life has been wrecked and stolen…
There will be no more happy holidays for Irhad
Saturday 18th December 2010

Below are the links to a documentary titled ‘Kuru’ which will broadcast across Australia on Sunday 19thDecember 2010 at 8:30pm. I have just watched a pre view copy.
Working closely with director Rob Bygot and his team, I provided Siamese Productions with resources, research and footage. It’s the story of a young medical scientist called Michael Alpers who has dedicated his life to find out why generations of the Fore Tribe in Papa New Guinea died of a horrific brain wasting disease known as the ‘shivering sickness’ or Kuru. The disease was specific to this tribe. Over a time span of 50 years individuals from this group of people have died particularly young children and women. It was discovered Kuru was due to the tribe cannibalising their loved ones after death, this practice was outlawed in 1959. Michael Alpers from Adelaide, Australia tracked the tribe as its numbers were devastated by a terrible neurological disease that couldn’t at first be identified or understood. Over decades Michael Alpers lived, filmed and worked with the Fore Tribe and a team of researchers to get to the truth and answers which have repercussions for the whole of mankind.During the programme Michael states ‘ We concluded that Kuru and cjd were the same kind of disease’ Professor Alpers injected brain material from a 11 year old girl called Kigea who died of Kuru in 1966 into to two chimpanzees. Less than 2 years later, the Chimps developed all the symptoms of CJD. This ground breaking experiment which showed that ‘The disease could be transmitted and that the implications of this positive transmission could be immense‘, took place. 15 years before BSE. UK Scientists and Whitehall knew for years that if infected brains or spinal cord were fed to humans it would result in the horrific brain wasting disease CJD..

Yet throughout the 1980s and 1990s scientists and officials in the UK government told us the UK public that is was ok to feed cattle their own diseased brains and spinal cords and then for over a million BSE infected cattle to be allowed into the human food and medicine chain.

After his 1966 experiment Alpers stated ‘It was significant with public health issues. A totally new human disease had been discovered’.

Professor Michael Alpers and his team believe that victims that have so far died of vCJD are just ‘the tip of the iceberg’ . As humans developed vCJD through ingesting infected cattle the incubation periods could be as long as a hundred years. As Vcjd has been transmitted from cow to calf and mother to child this raises many worrying scenarios for generations that have not even been born.. Alpers foretells that the next wave of vCJD victims could be higher, wider and broader in its range of victims as different genotype and individuals succumb to Vcjd due to infected material they ingested many years previously.

Terrifyingly vCJD has developed into an even more lethal pathogen than Kuru. Michael Alpers adds ‘vCJD is not just a disease of the brain but it can also be found in victim’s lymph nodes, tonsils, spleen and blood’.

This raises huge concerns regarding public health issues and transmission. Especially if an individual is sub clinical (hasn’t yet developed symptoms of the disease) asymptomatic (carrying the disease but not ill) or incubating (infected with the disease but apparently well).

I like to thank Rob Bygott and his team for highlighting and raising awareness about vCJD with their excellent well produced and written documentary. Also for their support and understanding the terrible devastation it wrecks on victims and their families.

The Fore Tribe was devastated by Kuru…..I fear OUR so called civilised world could well be facing a similar scenario …

Thursday 16th December 2010

Three years ago today at 9.20pm my son Andrew died …gasping for air as his lungs rattled to get oxygen into his body…. this pain and horror went on for nearly four days as his young body fought to stay with his family, whilst his brain had been systematically destroyed by vCJD. My beautiful, handsome young son, whose long black eyelashes framed his violet eyes….opened his eyes at the point of death …and then he was gone…I held my son all day and night before he was taken to the chapel of rest.


After he died we dressed Andrew in his favourite pair of jeans and designer shirt, washed, brushed and styled his hair….which stood up in a curl on his forehead as it used to de when he was a little boy freshly washed and in his pyjamas after bath time.

My Andrew looked so young…not a line on his face, he still had spots on his chin ….…too young and not ready to die….especially so horrifically……

As the funeral directors took my son away, as they drove out of the street, taking my sons body with them…I cried and wailed liked a banshee……that is the reality of vCJD…….

…No more days of sunshine, holidays, Christmas, laughter, love or life for Andrew….. no more peace or happiness for me his mum

From the time Andrew became ill with vCJD till the day he died and ever since I have continued my investigations into ‘Who killed my son?’ and ‘What killed my son?’

Alongside this I have been grieving and continue to be totally heartbroken, there is no healing or respite when your only son has died of a totally avoidable disease, which was UK man made, manufactured, condoned and allowed by those named and shame on this website.

There is no respite when those responsible for his unlawful death frequent our TV screens, lauded, shaking hands with monarchs and other dignitaries, gaining ever more honours, wealth and powerful positions in the establishment. Their fat, self satisfied and often bloated corpulent figures dissipated by greed and good living…whilst my Andrew lies 6ft down in the cold earth……

There is no ‘moving on’ …..Ever….there is no forgetting the horror of Andrews death and dying…..there is no respite from the fact that those responsible have so far never been punished……There is no peace knowing that my son should still be alive that the disease was totally avoidable and that Andrew should have lived at least another 50 years of life with his family…

I buried my only son 4 days before Christmas the funeral service took place in the Cathedral were Andrew use to sing and take part in his schools nativity plays.

The nightmare never ends and my life is very very different and I can never be complete or the same again….. 

From One Who Stays

How empty seems the town now you have gone!

A wilderness of sad streets, where gaunt walls

Hide nothing to desire; sunshine falls

Erey distorted, as it long had shone

On white, dead faces tombed in halls of stone.

The whir of motors, stricken through with calls

Of playing boys, floats up at intervals;

But all these noises blur to one long moan.

What quest is worth pursuing? And how strange

That other people still go accustomed ways!

A spectre- horde repeating without change.

An old routine. Alone I know the days

Are still-born, and the world stopped lacking you.

By Amy Lowell

 Friday 10th November 2010 Kenneth Clarke has recently stood up in the House of Commons and as head of the Justice Department announced cuts to legal aid. Some of these cuts will affect negligence cases which includes medical injustices. I am not going to enter this debate but the moves of Kenneth Clarke and the increasingly right wing government is clear, those that are poor, vulnerable, disabled, in need and unable to defend themselves will have even less chance of seeking and getting justice. elow this blog is a reply sent to Tommy Goodwin who lost his son Grant aged 30 to vCJD on 16th January 2009, from Kenneth Clarke. Its arrogant, unforgiving and pays merely lip service to a distressed and grieving dad. . Tommy has accused Kenneth Clarke of the unlawful death of his only son and the reply below is Kenneth Clarke’s brusque and as ever pompous reply.

As usual that old chestnut the BSE inquiry is used by Clarke as his ‘GET OUT OF JAIL FREE CARD’….we know the inquiry was stage managed by the very people it was supposed to investigate. Lord Phillips never had the true picture of the corruption and cover-ups that have killed so many innocent UK and global citizens.

Tommy Goodwin has been told despite Grants death certificate stating vCJD,. despite Lancet and many other papers published about his son’s condition by Professor Collinge and Professor Knight of the CJD unit Grant will never ever appear on any government statistics as a case of vCJD.

Professor Richard Knight has written a paper about Grant which he no doubt hopes will shore up his scientific career and on the same day told Tommy ‘ Grant will never go on the government official cjd stats for cases of vcjd’..The hypocrisy of this statement makes Tommy and my head spin…..

Despite Grants blood being used by the DOH for research into Vcjd and worth millions of pounds to UK government scientists… ….Grant Goodwin remains in limbo….his death due to vCJD not acknowledge by Whitehall, The Department Of Health or the UK Government . As it approaches the second anniversary of Grants untimely death his family remain completely distraught that not only has their beloved son died of vCJD but he is not recognised as a definite case of vCJD by the UK Government and its agencies.

As Grants tearful dad said to me ‘It was horrific to watch Grant die of a totally avoidable disease but now Westminster and the Department of Health want to make out as if my Grant never existed…lived or died….’ Tommy Goodwin continued ‘This is how figures for vCJD are being massaged and deliberately kept low to falsely reassure an unsuspecting public’. …

As you can see from the arrogance of Kenneth Clarke’s reply to a heartbroken dad, Clarke remains dismissive and lies not just about his involvement in the BSE/vCJD cover-up and corruption but the fact he has never received letters from other families and members of the public. I and many parents have written to Kenneth Clarke’s since his promotion to Lord Chancellor accusing him of lies and corruption throughout BSE and of our loved ones unlawful deaths. I know that many members of the campaign and ordinary public have also demanded his resignation. Kenneth Clarke allowed BSE material into our children’s baby food, school meals, the elderly meals in residential homes, colleges, universities and to feed our police force and armed service personnel. He allowed BSE material to be used in our vaccines….all the time knowing that BSE was a lethal pathogen to humans. Kenneth Clarke has put every family in the UK at risk of developing vCJD. Clarke could protect his own life and family and did so, we as ordinary members of the public never had that informed choice. Or the information he suppressed.

Kenneth Clarke continues to abuse his position of power in our government…..and is once again standing up in the House of Commons pontificating about cuts to the legal aid system…This is not about protecting us or saving money for the British public but is about Kenneth Clarke’s and those responsible for BSE guarding their backs and the lies that killed my only son Andrew….

Hundreds of children have died due to Kenneth Clarke’s and those named and shamed on this website deliberate decisions….hundreds more individuals have faced horrific disablement and death…experts predict hundreds more will die…..thousands struggle every day with what one victim described to me as ‘A living death’…hundreds of UK children under the age of 15 have lost a mum or dad to vCJD…..the list of victims of vCJD is endless……

Kenneth Clarke is responsible for so many unlawful deaths …his deliberate measured decisions have exposed us all to BSE…. Every member of the British public over 13 has eaten at least 50 BSE infected meals……even strict veggies…..

If any of these facts are untrue I invite Kenneth Clarke’s lawyers to sue me…..

Clarke’s ageing dissipated air of overfed puffed out corpulence hides a man of cynical steel and despotic ego…desperate to keep the lid on his criminal acts….Clarke currently holds the reins of our judicial system. Where is the justice in this?












Monday 6th December 2010

Below is a published paper about yet another victim of vCJD this time inTaiwan, the man lived in theUk between 1989 and 1997. So far I have been unable to ascertain when he exactly lived in theUK and when he started to develop symptoms. All of these Asian victims are important to map and define especially as they had lived, travelled or worked in theUK. These patients and others globally that I have been in contact with who obviously contracted the infection in the UK hold the key to understanding clusters, incubation periods and most importantly source of the infection. However precise information relating to these crucial events and victims infection are rarely published even though they are of public interest and concern,

My thoughts and understanding are with this mans family and friends may their god go with them…..

Probable variant Creutzfeldt–Jakob disease in Asia: A case report from Taiwan and review of two prior cases

Chih-Wen Yang MD1,3,
Jong-Ling Fuh MD1,3,
Shuu-Jiun Wang MD1,3,*,
Jiing-Feng Lirng MD2,3,
Chih-Chao Yang MD4,
Shih-Jung Cheng MD5

Article first published online: 25 NOV 2010

DOI: 10.1111/j.1440-1819.2010.02151.x
© 2010 The Authors. Psychiatry and Clinical Neurosciences © 2010 Japanese Society of Psychiatry and Neurology


New variant Creutzfeldt–Jakob disease (vCJD) was first identified in theUK in 1996, and was causally linked to bovine spongiform encephalopathy. Herein we report the first case of vCJD inTaiwan: a 34-year-old man who had lived in theUK between 1989 and 1997. The patient presented with depression, irritability, personality change, painful feet and allodynia, followed by gait ataxia and cognitive impairment. Electroencephalograms did not show the typical appearance of sporadic CJD. The cerebrospinal fluid 14-3-3 protein immunoassay was negative. Brain magnetic resonance imaging revealed high signal lesions involving bilateral caudate nuclei, left lentiform nucleus, bilateral dorsomedial thalami and pulvinar on fluid-attenuation inversion recovery, T2- and diffusion-weighted imaging. Prion protein gene analysis showed homozygous for methionine at codon 129. The patient developed akinetic mutism at 16 months and died at 28 months after onset. The clinical presentation and neuroimaging findings were compatible with the vCJD cases reported since 1996, and met the World Health Organization Case Definition for probable vCJD. In this communication, we also review two other cases of vCJD inAsia. All three cases were assumed as imported cases from theUK because of the residential or travel history of the patients.

Wednesday 1st December 2010

Gianluca Sgueglia died aged 33 in Italy, his family and brother Antonio were led to believe by medical experts that Gianluca’s decline and untimely death was due to vCJD. Within months the Italian authorities changed their minds and now say Gianluca died of another form of CJD. The family believe that their son and brother died due to BSE infected material. They continue to fight against the Italian Government, for the right diagnosis. Because of their difficulties in gaining independent support the Sgueglia family are currently formulating a foundation/charity in Gianluca’s name which will support and help other families and will be free of any government influence and interference.

The Sgueglia family are suffering not only the loss of their loved one but also the trauma of fighting the authorities for official recognition, this is a common scenario that is happening across Europe including theUKand globally. Governments do not want to admit the extent and numbers of people that are succumbing to vCJD, the number of cases of those who have died and are dying of thisUKman made manufactured disease are being manipulated to allay the public fears and to continue the cover-up that started here in theUK. Cases of sporadic CJD (naturally occurring form of the disease generally in people over 65) have tripled with cases as young as 20. This is in direct correlation to the exportation and consumption of BSE material. How many sporadic CJD cases are really vCJD?

I wish the Sgueglia family strength, and continued determination in their efforts to discover the truth…….