Feb- April 2009

Friday 10th April 2009

My daughter Emma is back from University to spend Easter at home. I have missed her very much, it will be good to spend some time together. Many parents suffer from ‘EMPTY NEST’ syndrome when their children leave home. I have felt this very acutely as my home has been silent of both my children after many years. Emma for all the good reasons, university life and moving forward and Andrew because he was cruelly taken from the life he should still be sharing with his family and friends.

Andrew and Emma photo 1
Emma is paving her way towards a good career and happy life and I am very proud of her and the achievements she has managed to experience during the last year. Here is a favourite photo of my children taken one Easter, Emma just a few years old looking very sweet standing next to her big brother Andrew.


Sunday 5th April 2009

MBC South Korean Producer Lee who was arrested for broadcasting a story about BSE has been bailed. In The Economist April 4th-10th on page 58 there is an article about the crack down by the South Korean Authorities regarding journalists freedom to report.

mbc producer arrested vcjd

The economnist mentions a blogger Park Dae-sung who was arrested in December after being rude about the governments economic management. He is still in prison.

The MBC documentary called ‘my lost boy’ about Andrew, vCJD and my fight for justice here in the UK was postponed three times and had to be edited to become a softer version of what the programme wanted to challenge. My Producer Chang was forced to delete and add various scenes to give a softer view of the lies and cover-ups here in the UK which led to the death of my son Andrew. This is the power of the beef, agriculture and pharmaceutical industries globally. My thoughts and prayers are with my journalist colleagues , friends and the people of South Korea as they fight for justice, freedom of speech. and freedom for the press to report the facts and truth. Alongside this blog is a photo of me with students and activists from Busan University in South Korea. Many of these young men and women have risked their freedom and their lives to speak out about BSE and continue to raise awareness about vCJD and my campaign here in the UK.

 

Saturday 4th April 2009

On Tuesday 31st March I  attended a meeting in the House of Commons. The meeting was a ‘Coalition on Blood Safety’ it was chaired by Earl Howe from the House of Lords.

Mark buckland

It was attended by Lord Archer who made a statement, Professor Azra Ghani from Imperial College, London, Dr Geoffrey Poole Welsh Blood Service and various other MPs, Lords and interested organisations and individuals. Lord Archer gave a brief statement about ‘Lessons from the Archer Report’ and Dr Azra Ghani Imperial College gave a brief talk about ‘The current risk of vCJD to the blood supply’.

With this blog is a photo of Mark Buckland who died of vCJD in 2006 aged 32 due to a contaminated blood transfusion he recieved during an operation. Mark came from Brighton West Sussex and studied in Manchester.
Afterwards we had a roundtable discussion in which I talked about Andrew, the campaign and my fears about a secondary SELF SUSTAINING EPIDEMIC (VCJD) through blood. The silent pool of individuals within the UK population who may be carrying vCJD and donating blood is a deep concern for myself and many supporters of the campaign. .

The Government must act as soon as possible and implement blood screening otherwise in the next years and decades we will see more innocent lives lost through vCJD which has been acquired through donated blood products and tissues.

Blood donors have told me …. ‘I GIVE BLOOD TO PERSERVE LIFE AND WOULD WANT TO KNOW IF I HAD THE POTENTIAL TO PASS ON A DEADLY DISEASE. TESTING MUST BE MADE AVAILABLE ASAP’

As Professor Azra Ghani stated during the meeting ‘there is a unknown pool of individuals’ who may silently be carrying vCJD.
These symptomatic individuals may remain well and free from the disease but could have the very real potential to pass the infection onwards during blood or tissue donation.

Below is part of the remit for the ‘Coalition Group’ 31st March 2009 Committee Room 21 House of Commons, Westminster.

COALITION ON BLOOD SAFETY OBJECTIVES

* To raise the profile and political awareness of issues surrounding blood safety and in particular, the safety of blood transfusions.

* To generate debate around how the NHS should ensure the safety of blood transfusions in the future.

* To build on the momentum generated by Lord Archers independent Inquiry by exploring and identifying future opportunities and solutions to help make blood safe for British patients.

* To allow groups and individuals with a diverse but linked interest in blood safety to understand the broader contest of the issue.

Thursday 2nd April

BLOOD TEST FOR VCJD!

There is a blood test available from a Canadian Company called Amorfix which can screen individuals for the rogue prion that causes vCJD. This blood screening test is 99.9 percent accurate and ten times more sensitive than the current HIV test. If put in place it would remove any individual who could have the potential to pass on vCJD through blood products.

This test has already been used on 10,000 anonymous blood donors in France. Amorfix now have 50,000 kits available to test for prevalence in the UK.( this was featured on Newsnight BBC2 23rd February 2009)

The Department of Health are not allowing Amorfix and other companies to access samples from vCJD victims to validate tests. As Andrews mother I would like his samples to be used to save lives but the Government are stalling regarding these tests.

andrew aged 22

Meanwhile lives could be lost as we don’t know how many blood donors are ‘silently carrying vCJD’ and donating blood. Professor Collinge has stated’ that one in a thousand of the UK population could be silently carrying vCJD’ (may 2008) .
I have asked my MP Mike Hancock to table the questions below to the Minister of Health.

To ask the Secretary of State for Health pursuant to the Answer of 27 March 2009, Official Report, column 757W, on Blood Donation Screening, what are the conditions for the EP-vCJD test to become a validated test.

To ask the Secretary of State for Health pursuant to the Answer of 27 March 2009, Official Report, column 757W, on Blood Donation Screening, whether his Departments will consider giving access to blood samples of those who have died of vCJD to companies who have developed a EP-vCJD test.

To ask the Secretary of State for Health pursuant to the Answer of 27 March 2009, Official Report, column 757W, on Blood Donation Screening, whether family members of those who have died of vCJD can decide whether blood samples of their loved ones can be used in the validation process of the EP-vCJD test, and accessed by companies who have developed a EP-vCJD test.

 

To ask the Secretary of State for Health pursuant to the Answer of 27 March 2009, Official Report, column 757W, on Blood Donation Screening, whether his Department is placing blood samples of those who have died of vCJD at the disposal of research to develop a prion filtration technology and blood screening for vCJD.

Sunday 29th March 2009

Dr Murray Walden MD from St Johns Rehabilitation Hospital in Toronto Canada is concerned about the huge rise in the numbers of Alzheimer’s cases globally and research suggests its not entirely attributable to an ageing population. Experts at the conference are worried that the ‘world may be experiencing an epidemic of Alzheimer’s diseases’ as incidence not prevalence has soared.

Dr Walden said ‘Epidemiological data collected over a 25 year period shows the incidence of Alzheimer’s disease in the 1960 was just 2 percent in people over the age of 85, whereas today most experts accept that the incidence of Alzheimer’s disease is 50 percent. It is 20 percent over the age of 75 years and 10 per cent in individuals over the age of 65 years old’ Dr Walden said ‘So incidence seem to have soared enormously in this brief period’.

INCIDENCES IN ALZHEIMER’S AND DEMENTIA HAVE RISEN TO EPIDEMIC PROPORTIONS SINCE BSE…..and cases are getting younger!

The increased incidence in Alzheimer’s Disease began in Europe moved to North America then to Japan, China. Dr Walden is convinced that this unprecedented explosion of dementia cases are due to infectious prions.

How many cases of Alzheimer’s and dementia are due to vCJD? Many families who have lost their elderly loved one have come forward to me via the website all convinced their family member has not died of dementia but of vCJD….many of these who have died worked in the catering industries and handled BSE infected material…we are still not being told the truth about vCJD … THE NUMBERS OF PEOPLE WHO HAVE DIED OF VCJD…and the correct estimate of how many of us are AT RISK OF DEVELOPING VCJD ……

 


Saturday 7th February 2009  

Just how many victims are there of vCJD?

ports news chris

 

Official statistics collated by the Edinburgh CJD Unit are used to reassure the UK public that vCJD is not a ‘significant threat ‘ to most people. The CJD unit only recognises 167 victims….I know through the hundreds of families who have contacted me that vCJD continues to kill on a regular basis…(photro Portsmouth News) .

Below are just some of the silent victims who wont appear in statistics for vCJD:

At least three children have been born to mothers dying of vCJD one a young girl is severely brain damaged. The other two youngsters are so far healthy but their dads and families live in constant fear that their children and grandchildren may go on to develop vCJD.

Three long term survivors of vCJD who have been treated with a controversial drug pentosan remain alive but in semi comas, unable to communicate, move and needing 24/7 nursing by their dedicated and loving families. Two young men and one young woman all aged 24 years old.

Over 4,300 UK haemophiliacs are ‘AT RISK’ of developing vCJD ( a third of these children) because their drug treatments were sourced from blood donors that went on to die of vCJD.

Thousands of people worldwide are walking around oblivious to the fact they were given blood, tissues , cells or organs from people who went on to die of vCJD. At any time these individuals could go on to develop vCJD and also if they are blood donors have the potential to infect other people.

‘One in a thousand of the population is probably carrying vCJD’ Professor Collinge May 2008

OVER 2 MILLION VACCINES IN THE UK WERE GIVEN TO CHILDREN DURING THE 1980s, 1990s, which were SOURCED FROM BSE INFECTED CATTLE. We also exported these vaccines to eleven other countries worldwide.

Also what about the elderly, homeless, addicts, dispossessed and people on the fringes of society. Any one of these dying of vCJD can easily and deliberately be misdiagnosed as dementia to keep the Govenments vCJD statistics low and less frightening.

The victims of vCJD are in their thousands….the potential for victims of vCJD is an epidemic waiting to explode.

Apparently no expert can tell me why my Andrew went on to develop vCJD ….what they are saying is that with the diagnosis of a victim from the next genotype at least 350 people will die in the coming weeks, months, years and with no screening or blood test a secondary self sustaining epidemic could occur through blood.

(18 blood donors have died of vCJD and four people have died through receiving blood donations infected with vCJD. Countless have died through growth hormone treatment, fertility treatment, organ transplants). …the list of people who have died, will die and have the potential to infect others is in the tens of thousands…………


Friday 6th February 2009  

From a very young age Andrew was at first fascinated and then determined to have a career in the media. He even made a camera out of a box and pretended to film everyone when he was just five years old. His determination to make a career in television and radio was astonishing and he really admired quick witty banter.

andrew madam tussauds

One of his heroes was comedian Robin Williams and when we visited New York 2003/4 we popped into Madame Tussauds near Time Square and Andrew insisted on having his photo taken with Robin Williams wax work dummy. Both of us agreed it didn’t really look much like the comedian but whenever I look at this photo I smile and celebrate the fun and laughter my only son brought to my life. I miss his grin, smile and laughter so much ……..


Thursday 5th February 2009

Dear Mrs Lord,

I have just watched the DVD which you very kindly sent me and I will mention vCJD whenever I can. Blood safety is of the up most importance and your campaigning is very important.

My very best wishes, 

Baroness Masham of Ilton

 


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