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Christines Blog (Archive Blogs 5)

Tuesday 29t h Sept ember 2009 In an article in the October- December 2000 Edition of "Food Magaz ine" by Joanna Wheatley, an organic beef farmer, the following is written in relation to abattoirs being an unregulated source of material for veterinary and human medicines: "The Department of Health was concerned that bovine blood serum was being used in routine vaccinations. They decided the risk might be present but low compared to the apparent benefit of the vaccination programmes. They also appeared concerned that, if they admitted to a risk, there might be a large public reaction against all vaccines." "But only from July 2000 must pharmaceutical companies obtain their supplies from elsewhere in the world. And only from March 2001 did this apply for veterinary medicines." http://www.slowlyslowlycatchymonkey.com/BSE_from_Farm_to_Needle_Oct_2000.pdf Thursday 24 t h Sept ember 2009 Amorfix the Canadian company who have developed a blood screening test for vCJD, have now tested 30,000 blood donors at a Transfusion Centre in France they announced: These results should give governments confidence that very few blood donors will be falsely identified as potentially having vCJD during routine blood testing. The screening test has achieved 100 percent specificity (no reproducible false positive results). So why is this test not available to screen donated blood here in the UK? And why is Amorfix being denied access to blood samples from vCJD Victims? . I gave my permission for my Andrews blood samples to be used by the Department of Health to help with treatments cures and research, yet my Andrews samples without my permission are being withheld and not being given to Amorfix. The government and its officials are playing god with not only the British publics health but also controlling and keeping my Andrews blood samples back for their own agendas, I thoroughly disapprove of this and my poor Andrew would be very angry too.
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Amorfix Press Release continues The test continues to demonstrate its readiness for use by high- risk nations to conduct prevalence studies to assess the safety of their blood supply (see complete press release below) The continued delays and blocking of this essential test will mean that people could die needlessly through blood contaminated with vCJD. The UK government have it within their power to start this screening test asap and save more families from suffering the heartbreak of loosing a loved one to vCJD. Once again political agendas and cover- ups are paramount and the British populations health and well being a very poor third.

Press Release - TSX: AMF

Sept ember 21, 2009 AMORFIX BLOOD TEST FOR vCJD CONTINUES TO ACHIEVE EXCELLENT SPECIFICITY ON BLOOD DONATIONS AT SECOND BLOOD CENTER IN FRANCE - - 30,000 Donat ions Test ed t o Dat e - TORONTO, ON, September 21, 2009 - Amorfix Life Sciences, a company focused on treatments and diagnostics for brain wasting diseases, today announced it has achieved 100% specificity (no reproducible false positive results) upon testing 10,000 blood donations for variant Creutz feldt- Jakob Disease ("vCJD"). with the EP- vCJD Blood Screening Assay at l'Etablissement Franais du Sang de Pyrnes Mditerranne ("EFS PM") in Montpellier, France. "France continues to take a leading role in assessing the feasibility of testing routine blood donations for vCJD. The study in Montpellier included testing of fresh blood within 24 hours of collection and processing of the plasma with an automated sample handling system. This is the exact process that would be used in routine blood testing" said Dr. George Adams, Chief Executive Officer of Amorfix. "These results should give governments confidence that very few blood donors will be falsely identified as potentially having vCJD during routine blood screening." The blood samples were collected and tested as part of a large- scale study being conducted to demonstrate the feasibility of routine testing of blood donations for vCJD. Using the settings for maximum sensitivity of 1:1,000,000 dilution of vCJD brain, as verified by testing at the NIBSC in the UK, the test in EFS- PM was 100% specific. The test continues to demonstrate its readiness for use by highrisk nations to conduct prevalence studies to assess the safety of their blood supply. Including these 10,000 blood samples collected and tested at EFS PM, a total of 30,000 blood donations have now been tested at two sites in France. 99.90% specificity was previously reported for 20,000 samples tested at EFS- Alsace in Strasbourg. In both blood transfusion centers using two lots of kits, the EP vCJD test performed better than the 99.85% specificity required by the UK Blood Transfusion Service. About vCJD vCJD is rare and fatal human form of a family of diseases known as transmissible spongiform encephalopathy ("TSE") diseases caused by prions. Other TSEs are bovine spongiform encephalopathy ("BSE") in cattle, scrapie in sheep and goats, and chronic wasting disease in deer, elk and moose. Since 1996, a few hundred people living in or visiting Great Britain and other European countries have been diagnosed with vCJD due to the consumption of BSE- infected meat. People can incubate prion disease for 30 to 50 years and could be capable of transmitting it to others throughout that time. Indeed, it is estimated that more than 20,000 people
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are currently incubating the disease. Recently, five people have been infected through blood transfusions and thousands of people have received blood fractions made from vCJD- infected plasma. There is a general concern that vCJD is now within the blood transfusion systems and, as a result, a screening assay for blood is urgently required. About t he EP- vCJD Blood Screening Assay Approximately 81 million units of blood are collected annually and tested for infectious agents, such as HIV- 1 and hepatitis viruses at a cost of more than US$4 billion. Until now, however, there has been no way of protecting the blood supply by testing for vCJD. Amorfix is changing that through the Companys development of EP vCJD - a test for the presence of vCJD prions in human blood that allows for the selective detections of prions and not the precursor normal protein About Amorf ix Amorfix Life Sciences Ltd. (TSX:AMF) is a theranostics company developing therapeutic products and diagnostic devices targeting misfolded diseases including neurodegenerative diseases and cancer. It has specific programs in vCJD, ALS and Alz heimer's Disease. Amorfix's proprietary Epitope Protection (EP) technology enables it to specifically identify very low levels of aggregated misfolded proteins (AMP) in a sample containing normal protein. Aggregated misfolded proteins are a common element of many brain- wasting diseases, and more recent evidence points to misfolded proteins being created in many cancers. Amorfix has shown antibodies and vaccines to misfolded proteins are therapeutic in preclinical animal models. Amorfix's lead programs are a diagnostic blood screening test for vCJD and a therapy for ALS. For more inf ormat ion please cont act : Dr. George Adams President & Chief Executive Officer Amorfix Life Sciences Ltd. Tel: (416) 847- 6959 Fax: (416) 847- 6899 george.adams@amorfix.com Dr. Neil Cashman Chief Scientific Officer, Director and Co- founder Amorfix Life Sciences Ltd. Tel: (604) 822- 2135 Fax:(604) 822- 7299 neil.cashman@amorfix.com Tuesday 22nd Sept ember 2009 This time of the year really is really poignant and painful for me ...as Summer turns to Autumn, the days grow shorter and hours of daylight and sunshine less...so it reminds me of the final horrific months of my Andrew...... with the dying of the year he died by degrees every minute of the day......

Wednesday 16t h Sept ember 2009

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The role that vaccines, baby food, and school meals played in victims developing vCJD is discussed at length on this website. I would urge you to check out the link below and read the mounting evidence that continues to be uncovered regarding the unscrupulous and dangerous methods used to manufacture vaccines and how they are implicated in the development of vCJD. One world renowned scientist, who has dedicated her life to finding cures for a variety of neurological diseases, had been made to sign the official secrets act but bravely contacted me to discuss her concerns. Even talking to me about these issues during our recorded interview could mean imprisonment for this respected scientist. She was terrified this is part of what she told me: The most effective way to transmit vCJD to a human being is intravenous. We know without doubt that people have died of vCJD through contaminated blood so its probable that some of the other victims of vCJD have been caused through contaminated vaccines The facts are clear, we know that many people have died of CJD through growth hormone injections and also thousands of UK haemophiliacs live with the ticking health time bomb that the Factor 8 and 9 blood products given to them throughout childhood were sourced from vCJD donors, These UK haemophiliacs live daily with the fact that at any time they could go on to develop vCJD because of the regular injections they where given as children. We also know that individuals have died of vCJD through infected blood transfusions as well as transplanted tissues. Experts also tell me its extremely difficult to become infected with BSE material orally (by eating food) and the most effective route to become infected is via medicinal/ intravenous or surgical procedures. Margaret Thatcher and her Ministers knew that the vaccines supplied by her government had a risk of transferring vCJD to the babies, children and adults they were supposed to protect. Yet Thatcher and her very informed Ministers chose to continue with the vaccination programme throughout the 1980s and 1990s knowing these risks. The pharmaceutical industry was worth billions of pounds and childrens lives came a poor second to the money that was being made in the city of London and for those drugs companies global shareholders. The same Ministers and officials who were allowing these deadly vaccines and medicines to be administered to our most vulnerable, then made sure that their own children and grandchildren did not share the same risks. Whilst my Andrew was bombarded with vaccines processed from BSE infected cattle, Thatcher, her Ministers and Senior Scientists chose different lifestyles for themselves and their families. I leave it the readers of this blog to digest the information I continue to uncover and to form your own conclusions.. http://www.vaccineriskawareness.com/Vaccines- BSE- and- vCJD?r51560049 Thursday 10t h Sept ember 2009 The USA like many countries around the world that imported BSE contaminated food and medicines, have had unprecedented cases of sporadic CJD. This form of the illness is normally naturally occurring and until the emergence of BSE was very rare, just one in a million of the population and mostly people in the 65 year old age range. Since BSE entered the human food/ medicine chain America has shown a sharp increase in cases of sCJD. With patients as young as 25 years old apparently dying of sCJD.
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To highlight the campaigns and my solidarity with affected families, my friends and supporters in the USA with this blog is a photo of Andrew taken in Central Park New York, Christmas (2003). Since the launch of this website many families from the USA and globally have got in touch with me convinced the diagnosis of sCJD for their departed loved one is incorrect, convinced that BSE infected material is connected with their family members horrific and untimely death. As world expert in prion disease Professor Collinge said to me Incidences of sporadic CJD are rising and cases are becoming worryingly younger. Is it because we are getting better at diagnosis or as I suspect because of BSE material in the human food chain (MAY 2008). In the USA like the UK and other countries there also seems to be clusters of cases of sCJD but this strain of the disease is supposed to be spontaneous and one offs these groups of cases suggest environmental and lifestyle factors. The official government statistics in the UK for all types of CJD show a marked increase in cases of sporadic CJD whilst vCJD appears to be falling?. My investigations show these figures are massaged and not correct I know of several people who have died of vCJD who have never appeared on the governments official stats. This is another attempt by the establishment to keep the lid on true numbers of people who have and will die of vCJD here in the UK. There have been cases of people dying in the UK with reports at their autopsy of sCJD with also tendencies for vCJD what does this mean? Another cover- up? . Sat urday 5t h Sept ember 2009 Photo of me and Pete Buckland outside Westminster. Pete lost his only son Mark aged 31 to vCJD due to contaminated blood. Its essential to prevent more deaths likes Marks that all donated blood in the UK is screened for vCJD. A blood test is available which can remove any donor who has the potential to pass the deadly disease onwards. As regular supporters of this blog will know I have asked repeatedly for my blood to be screened for vCJD . As 20,000 blood donors have already been screened in France and as a citiz en of the EU I believe its my human right to be allowed this test, and that screening donated blood for cud in the UK should be implemented as soon as possible. The Department of Health keep saying there is no test and the Government continue to stall in the hope that a general election will be called before they have to make a decision. Whilst this prevaricating continues lives will be lost and once again the British publics health and welfare is being put before political careers and keeping a lid on the prevalence in the population. Thousands of us may be silently carrying the lethal disease with the potential to pass it onwards through blood. In an article in the Salisbury Journal this week http://www.salisburyjournal.co.uk/news/4576821.Campaign_for_vCJD_blood_screening/ Lisa Farrant (22) from Fordingbridge talks about her familys fight with the Department of Health to have her late grandmother recognised as a victim of vCJD. Audrey Cook was first diagnosed as dying of Alz heimers but after the families insistence it was
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changed to CJD. The former school dinner lady handled MRM (mechanically recovered meat) and meat for many years in school kitchens. Her family remain convinced she died of vCJD and are still battling the authorities. Audrey Cook was also a blood donor. How many elderly people have died of vCJD? But to ease and massage government statistics they are recorded as dementia or some other convenient disease? The cover- up continues and with UK blood not screened for vCJD more lives will be lost needlessly in the coming years and decades. How many people are carrying the disease? Kenneth Calman, the government's Chief Medical officer (named and shamed on this website) admitted "If just one in 1000 cases proves positive, in a population of 50 million that would imply that 50,000 people are infected." [Science 281 Sep 1998, pp. 1422) If you would like to help the Campaign for vCJD blood screening please contact me with any information/suggestions, your MP/MEP and voice your concerns. I dont want another parent to suffer the heartbreak I do every minute of the day. Professor Marc Turner at the first meeting of SABTO (Safety of Blood, Tissues and Organs who advise the government) said The numbers at risk are clear (2.4 million people donate blood in the UK).adding that UK donated blood Is a significant risk and concern to SABTO. Wednesday 2nd Sept ember 2009 On 2nd September 1983 at 1:20pm lunchtime Andrew was born in St Marys Hospital Portsmouth. Nearly eight pounds at birth he was such a strong baby that within a few days he was raising his head and having a good look aroundthat curiosity for life and the world around him remained throughout his too short life of 24 years.. Andrew grew into a strong and energetic boy and young man. Like any Mum I had so many hopes, wishes and dreams for my boy ...the foundations of which was that he would have a long, happy, healthy life I miss my Andrew so much his smile, his laughter and most of all the future he should have had with his family, partner, friends and colleagues... the dreams he will never fulfil the future that has been stolen from him. SONNET Time does not bring relief; you all have lied Who told me time would ease me of my pain! I miss him in the weeping of the rain; I want to hold him in my arms at the shrinking of the tide; The old snows melt from every mountain- side, Heaped on my heart, and my old thoughts abide. There are a hundred places where I fear to go- so with his memory they brim.
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And entering with relief some quiet place Where never fell his foot or shone his face I, say There is no memory of him here! And so stand stricken, so remembering him. Edna St Vincent Millay

Wednesday 26t h August 2009 I have been informed by Michael Powers QC that the photograph of my beloved Andrew dying of vCJD has been passed onwards to Dr Paul Knapman President of the Coroners Society. Lets hope those Coroners who are resisting testing for vCJD at post mortem will reflect on that photograph of a 24 year old innocent young man dying of an acquired disease and help to stop any one elses son or daughter acquiring vCJD by agreeing to automatically screen people during autopsies for vCJD.

Friday 21st August 2009 I appeared on BBC Breakfast News on Wednesday 19 th August with Michael Powers QC, Graham Medley Scientist and member of SEAC (the organisation that advises the government re vCJD) , discussing the UK Coroners resistance to test individuals during autopsy for vCJD. Below is the rough transcript of the valid points I put to these distinguished expertsas to why Coroners are not doing their job and should automatically screen every person at post mortem for vCJD. Here is also a newspaper link to me dramatically giving Michael Powers a photo of my dying son live on air . and you can see all the press coverage from this story on the press page of this website. http://www.portsmouth.co.uk/newshome/Anguish- of- mum39s- fight- to.5569347.jp This is a shortened version of what I said, this was not just on behalf of my Andrew and all victims of vCJD, but also on behalf of all members of the British Public and the global community .too often scientists, government ministers and their officials make decisions without public knowledge that have far reaching and sometimes serious or in my Andrews case deadly impact on individuals and the populations health and well being..
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Christine I am disappointed that a current Coroner who is refusing to screen for vCJD during autopsies did not feel brave enough to face me, but am hopeful for action and productive dialogue from Michael Powers the best medical lawyer in the UK who I also understand was a Coroner during the height of BSE. I like to present a photograph of my son Andrew dying of Vcjd to Michael Powers and ask him to pass this onwards to the Coroners that are reluctant to take samplesthis is the reality of vCJD a ticking health time bomb for the whole of the population. I have been told by experts that up to ONE IN A THOUSAND OF THE UK POPULATION COULD BE SILENTLY CARRY VCJDits therefore essential that Coroners help to find out the prevalence in the UK population and in doing so protect human health. By finding out prevalence we can protect the population and also push forward with treatments and cures. There are two other very important issues here: I am sure families would want to know if their loved one was carrying a deadly disease and would not object to samples being taken for vCJD. Especially if the deceased had been a blood donor, been involved in invasive surgery or medical procedures as these are high risk of passing the disease onward to other people. Individuals who silently carry the disease never become ill themselves but have the potential to infect other people with Vcjd.People have already died with Vcjd through infected blood and medical procedures. Many victims in the early stages of vCJD have been involved in car accidents, suicide attempts and medical emergencies.who know how many people have really died of vCJD..Coroners have to help clarify this.. A culture of secrecy in the 1980s and 1990s with public servants looking the other way Saying its not my job its not my responsibility killed my only son Andrew, I and the British public are looking for honesty, transparency, the public need and should know the facts.. Michael Powers QC states on his website about the role of UK Coroners THE CURRENT SYSTEM IS TOTALLY UNSATISFACTORY Wednesday 19t h August 2009 A couple of news links from todays TV, Radio and Press coverage. Many more links can be found on the press page. BBC Radio 4 Today Programme http://news.bbc.co.uk/today/hi/today/newsid_8208000/8208824.stm BBC News http://news.bbc.co.uk/1/hi/health/8207034.stm Tuesday 18t h August 2009 I will be appearing on BBC1 Breakfast Show tomorrow Wednesday 19 th August from 7.30am to talk about vCJD and how once again public servants are looking the other way and saying its not my job or responsibility and in doing so putting the UK publics health at risk. Please tune in and give me, Andrew and all victims of vCJD your support...and have your say online and via the BBC phone line......
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Monday 17t h August 2009 Below is a letter sent to one of the campaigns supporters who wrote to Douglas Hogg former Agriculture Secretary, asking him to defend his role regarding BSE and my Andrews untimely death. This trite letter is typical of the arrogance and disregard that the ministers and officials responsible for bse and its lethal pathogen vCJD have for its past present and future victims. HAPPILY GLOOMY ASSESMENTS .. what vulgar and banal words to use when talking about a disease that Hogg and his political minions helped to create and condone in the food chain.one death is one death too many when its avoidableand there have been hundreds and will be unfortunately hundreds more deaths due to vCJD. . The last paragraph in which HOGG STATES: I am confident that those who held my office before me and those who advised them acted in good faith and I have no criticism of their motives or conduct. This statement is untrue the only good faith those in power before and during BSE acted upon was to keep their jobs and the money making beef industry running. Hoggs support of Gummer and his cronies is not worth the paper its written on.Hogg like the other ministers and officials knew the dangers of BSE to human health. But care only for government policy political careers and profits. He lied during BSE and continues to lie and has been lying ever since.. This is the MP for Lincolnshire who has recently had to stand down because he lied again and again about fiddling his expenses.Hogg claimed 22,000 a year for his housekeeper and the car she drove, piano tuning, stable repairs and 2,000 to clean the moat on his mansion and huge estate. This is the MP who when challenged about these expenses lied and said he hadnt claimed, only to bee wronged footed with written evidence. When he was confronted with his wrong doings he backtracked and made a feeble excuse such as ...... paper work was missing! Douglas Hogg has now stood down as MP but he will get a huge pension and he remains financially very wealthy...when my Andrew was dying I was told that a wheelchair was not available and had to borrow one from the fantastic Red Cross.THREE MONTHS AFTER MY ANDREW DIED I WAS phoned with an appointment to have Andrew measured for a NHS loaned wheelchair.where is the justice in this? I am a taxpayer my son paid his taxes too and no doubt funded the wealthy life style of Hogg and his cronies My son is dead at just 24 .Hogg and his cronies remain wealthy and free..why?

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Friday 14 t h August 2009 In October 2000 one of the youngest victims ZOE JEFFERIES AGED JUST 14 died of vCJD. Her mother Helen had just been widowed and was left caring for four young children. Devastated Zoes mums said: I TOOK THE GOVERNMENTS WORD WHEN WE WERE TOLD BEEF WAS SAFE TO EAT AND WE HAD NO NEED TO WORRY SHE ADDED I REALLY DO THINK SHE HAS BEEN MURDERED. Helen from Wigan blamed herself for giving Zoe beef burgers and minced beef when she was a young child and added I wont allow any of my kids (Zoes three young siblings) to eat meat now. John Gummer declared again and again as did his fellow ministers and officials that beef was safe to eat. Like all those Ministers and officials named and shamed on this website Gummer and Company have selective memories about their decision making during BSE, which have been honed after years of ducking and diving to protect their wrongdoings and double dealing. During our face to face interview Gummer could quote word for word what he saw as exoneration of his responsibility in the BSE Scandal from the Phillips Inquiry. Yet when he was quiz z ed by the BSE Inquiry on Tuesday 8 th December 1998 ten years before our meeting, he had memory lapses and was unable to recall significant parts and areas of his decision making. During his time as Minister of MAFF, he could not recall seeing documents and warnings abut BSE and its threat to human health. He could not recall essential areas of his job as Minister of Agriculture Fisheries and Food; he could not remember anything about his role if it would incriminate him or his ministerial career. Below are just some of the half truths and memory lapses he suffered to extricate himself from the criminal proceedings he should have faced. The BSE Inquiry (part of the) STATEMENT No 311a The RT HON JOHN GUMMER oral evidence 8 th December 1998: * A1 I do not recall receiving a submission from MAFF lawyers dealing specifically with the consultation process under the food act.. * E1 I was not aware of the concerns expressed by the Welsh Office in the documents referred to. I was not aware of these problems I know from talking to ex MAFF Officials that Gummer was warned on many, many occasions the threat BSE posed to human health. There were documents, research papers, meetings and letters so full of concern that the people that generated them were warned in no uncertain terms to keep quiet or else. Indeed some of the scientists working on these research papers were so scared that they and their families change their entire eating habits and lifestyles, in much the same way as Gummer and his family did too. Dont be fooled by the publicity stunt when Gummer apparently fed his daughter Cordelia a beef burger (she did not eat the burger) . .Gummer and government Ministers knew exactly what their families could ingest safely. Whilst
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the likes of my little family of three and every member of the UK population did not have that informed choice or insider knowledge. Whilst they were telling us it was ok to eat BSE infected material.Gummer and those named on this website were keeping their families safe and free of infection Whilst the exact route of my Andrew developing vCJD is an area I continue to investigate (there is a person and paper trail back to the origins of my Andrews infection) and one that I am pursuing a the moment. What we do know without doubt are the individuals their names, the roles they played who were the creators and architects of vCJD. So why are John Gummer, John McGregor, Colin Mclean, John Major, Margaret Thatcher, William Rees, Donald Acheson, Keith Meldrum, Douglas Hogg, Stephen Dorrell, Richard Packer ( and see list of others) not in the dock? Why in fact have many of them been rewarded, knighted and made huge financial gain from their lies and cover- ups? Because the corruption that allowed these architects and encouragers of BSE and its lethal pathogen vCJD was so entrenched in the UK establishment that they think and believe they are untouchable. If government allows ministers or officials to get away with killing innocent people and putting the whole of the UK and indeed global community at risk those perpetrators feel they can get away with anything.. Well Gummer and company are wrongthe puppet master has been cutting strings.. they are expendable and rats are jumping ship.. Sat urday 8t h August 2009 I have just returned from a trip to Wolverhampton, Birmingham and Manchester. Whilst away I visited Andrews friends and all the places he was at his most happiest. His friends arranged a meal at one of Andrews favourite pubs, as I sat down and looked around the table of eight young people all talking about their latest holiday, memories of Andrew and their hopes and wishes for the future, it made me both proud and very sad that Andrew was not there with us, and that for him there will be no future. My son will never grow older than 24 years, whilst his friends will go forward with their lives. I am so glad that Andrew had and has such wonderful caring and considerate friends. Here is a photo of Maria, Owen, Me, Fergie and Emma at the Pub. Throughout Andrews last days his friends were constant, visiting regularly and some every weekend. I thank them for caring for my son and also being their for him during his best and darkest days.
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Friday 31st July 2009 We have just returned from a trip to Oxford here is a photo of me in the quadrangle of Christ Church College Oxford University. For those Harry Potter fans the dining hall in Christ Church was used in the first two films. During our stay in Oxford we also bumped into the crew filming the latest series of Lewis to be broadcast later this year. . As always during the summer months Oxford was full of summer students and tourists but it was still nice to have some time out when I wasnt filming/researching to enjoy a walk by the river and watch people punt and trying not to fall in!

Thursday 30t h July 2009 Here is a photo of me just before I go in for my appointment at Sommerstown Health Centre to meet with the medic from the Wessex Unit Southampton University. I have now officially requested through the NHS that my blood is screened for vCJD. The meeting took about an hour in which I discussed my reasons for wanting the test. My GP, my family and my personal counsellor who I have been seeing for nearly two years all support me in my decision to be screened for vCJD. Jess Shearn the Nurse Counsellor was very supportive so the beginning of the procedure for my blood screened for vCJD in the UK begins. I will keep you posted regarding developments. Blood and blood donors are currently screened for vCJD at two blood transfusion centres in Francehow much longer do we have to wait before UK donated blood is safe and free of vCJD?

Friday 24 t h July 2009 PRESS RELEASE A Portsmouth mum who lost her son to vCJD just eighteen months ago is starting the process to have her blood screened for vCJD. Christine Lord campaigner lost her only son Andrew 'Andy' Black to vCJD on 16th December 2007 aged 24. Since then she has campaigned relentlessly and her most recent goal is to help safeguard the UKs blood supply. Check out www.justiceforandy.com
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Over 18 people who were blood donors have gone on to die of vCJD and in turn they have infected other people with vCJD through blood transfusions and blood products. There is a test available from a Canadian company called Amorfix but the department of health have been stalling and delaying the implementation of this blood screening test, which is more sensitive than the current HIV test. Amorfix have already tested 20,000 blood donors anonymously in France (see press release attached) and have thousands of kits available to test for prevalence here in the UK. Yet there are continued delays. Christine has written and contacted health minister Dawn Primarolo whose response is 'there is no validated test for vCJD' Yet the DOH are stopping validation. Why is this blood screening test for vCJD available abroad yet not in the UK? Lives could be lost whilst these delays continue. Christine will be attending Sommers Town Health Centre to meet with screening counsellor Jess Shearn from Southampton University Hospitals, to start the process of being allowed to have her blood screened for vCJD. Christine said: I speak for myself and many other family members who have lost a child to the avoidable vCJD we feel we should have the right to be tested and to help safeguard the blood supply so that no other parent or family looses a loved one due to vCJD through blood or blood products. she continued my sons death and all victims of vCJD was avoidable, we can prevent further deaths of vCJD through blood yet the DOH continue to delay this vital test by putting more and more protocols and hurdles in the way of its validation. Christine believes that the government has been stalling over screening not to protect human health but to keep a lid on prevalence of vCJD in the population she added the incubation period for vCJD can be decades and according to experts like Professor Collinge one in a thousand of the UK population could be silently carrying vCJD that means thousands of blood donors have the potential to pass on this deadly disease to others. She added At present lecodepletion at best only keeps blood 39 percent safe, ( Prof Mark Turner SABTO) Blood that is used and donated here in the UK should and can be 100 percent safe and Amorfix test can achieve this she concluded here we are over 25 year since the beginning of BSE thirteen years since the first victim of vCJD and what has changed.in this country? there is not an atmosphere that fosters good science/government and successful interventions but one that controls its.I am hoping by me starting the process of being screened the culture of secrecy that killed my son and still surrounds vCJD can be dispelled and in doing so protect and prevent others from dying in the same horrific way as my beloved only son. Friday 17t h July 2009 Cow and Gate admitted in a letter they sent me that they used mechanically separated meat (MRM) in their baby food jars from 1983- 1988 (see documents page) MRM is .the slaughterhouse slurry that many experts blame for causing vCJD. Other big name food companies also used this vile mixture of brains, spinal cord and rubbish that was left on the animal that nobody else would buy. MRM was toxic but was hugely profitable as it was very cheap and could be disguised. On jars and food labels
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it was usually named as meat products. For those of us eating these foods on a regular basis we had no idea we were putting our families and our lives at risk. I had no idea that during the 1980s and into the 1990s that MRM and what it consisted of was in school dinners, baby food and many of the products that lined our supermarket shelves. So who are some of the other companies that allowed MRM to be used as bulking agents in their food products? Batchelors, Bowyers and Dalepak all used MRM in their pies, burgers, soups and sausages. Dalepak who made the Ross range of burgers, steaks and grills added the pink sludge of brain material (MRM) to their food brands. Using bovine MRM in these products was not discontinued until 1992 How many millions of the UK public have been exposed to these products, how many them are now perhaps silently carrying vCJD or may indeed develop it in the next weeks, months or decades? So profitable was the sourcing and manufacturing of MRM that companies such as Perimax with plants in Scotland and England were set up specifically to produce MRM from pigs, cattle and poultry carcases. Where are the directors of these firms, the CEOs the fat cats that made huge amounts of money out of this vile practice and put everyone in the UK at risk of developing vCJD? Why did the government in the 1970s, 80s and 90s encourage and condone the use of diseased cattles brains, eyes and spinal cords in baby food and school meals? Why did these government officials and Ministers look the other waywhen they knew the dangers that BSE and the most infectious material from the brain and spinal cord posed? And more importantly who are the rich landowners, Tory MPs their families and friends that had shares in these businesses? They are some of the most wealthy and prominent members of government and the establishment. They made fortunes by supporting and encouraging the widespread use of MRM in food products destined for most dinner tables in the UK during BSEyet though they were the architects of vCJD, they remain untouched by the catastrophe. Financially sound many have even been knighted for their services to the country.I despair at the corruption that surrounds vCJDthe corruption that killed my only son I have the men and women responsible women firmly in my sightthey have been warned. Monday 13t h July 2009 Here is a photo of Andrew March standing alongside the Human BSE Foundation Plaque opposite the Houses of Parliament in Westminster. Andrew March is a haemophiliac and was given the most phials of medicine which was sourced from blood donors that went on to die of vCJD. He lives daily with the fact that he is 'at risk' of developing vCJD. Despite this Andrew March is an active campaigner and wonderful musician and composer. Andrew March like myself is actively pursuing the right to have his blood screened for the rogue prions that cause vCJD. Despite screening tests being available the Government and Department of Health are stalling and delaying the validation of these essential tests. Why the continuing delaying tactics and rhetoric which muddles and confuses? Once again the UK populations health is not being safeguarded and my fears are that in five, ten twenty years time more people will die of vCJD through blood products, when their lives could have been saved...... Friday 10t h July 2009 Here is a letter from Jan one of the campaigns many supporters. She wrote to her local MP Oliver Letwin regarding the Amorfix blood
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screening test for vCJD. I provided her with all the information about the Canadian Company's and how they have tested 20,000 blood donors anonymously in France and now want to carry out a prevalence study on donated blood here in the UK. Amorfix test is more sensitive than the current HIV test and the Department of Health are the ones stalling on validation. Amorfix cannot get the test validated until the Department of Health give the go ahead. Dawn Primarolo talks about the 'Potential for a test to produce incorrect results means caution must be exercised'. This is once again rhetoric and inaction which is stalling a test with virtually 100 percent accuracy. I believe the wording of both these letters speak for themselves and are more about keeping the lid on exactly how many of us in the UK population may be silently carrying vCJD than anything else.

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Monday 6t h July 2009 Since the launch of the website millions of people have been in contact with me and the rest of the campaign team. From important evidence, information, offers of support and help to broken hearted families the website has proved to be a wonderful way of communicating globally. Recently several new families have been in touch who have lost their loved ones to vCJD and also families whose loved ones are alive and still struggling with the horrific man made disease. VCJD whatever government statistics say continues to kill on a regular basis, it hasnt gone away Here is a photo of Andrews shirts hanging on his wardrobe door in his bedroom. Since he died 18 months ago I have sent all the clothes he wore during his illness to various charities, but the clothes he wore when he was fit and well I have not been able to part with. One day soon I know I must pack away his clothes, the designer shirts, suits, jeans, trousers that my son wore with such panache and style and send them to the charity shops. I know I will keep a few of his favourite shirts and items that have good memories and sentimental meaning for me. Every so often I go into his room and fold up some shirts put a few pairs of jeans in a black bagand each time it feels like I am boxing my son up and sending what is left of him awayand each time I fold an item of clothing that he wore it feels like I close another door of what was once my sons life and I weep uncontrollably for hours.. This is the reality of loosing a beloved child to vCJD.the reality that is now my life and on going grief..The reality for thousands of family members and friends of those taken and stolen by the avoidable vCJD. Wednesday 1st July 2009 Emma has just finished her first year at university and I am very proud of all she has achieved. Here is a photo of Emma and her boyfriend Sam in her bare room at halls. It took two trips to London in my small car to get all her stuff home, goodness knows where she put it all..... Here is a photo of Emma with her boyfriend Sam in her very empty room. Like thousands of other parents up and down the UK I am pleased to have my daughter back home again for the summer. I have missed Emmas laugh, energy, bossiness and outspokenness. Most of all I have missed our cuddles. Thursday 25t h June 2009
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One of the first victims of vCJD was Stephen Churchill who died aged 19 years old in May 1995. Yet ten, twelve and thirteen years later young people in their late teens and early twenties are still dying of vCJD. Surely if BSE infected material was no longer in the food and medicine chain after 1996 then the ages of victims should be getting older not staying the same? What are we not being told? And how many more innocent young lives will be stolen through the UK man made manufactured disease vCJD? Why is there not a more broader age group succumbing and dying of vCJD?, one of the latest victims just 20 years old was not born until 1988 .so did he get infected as a baby? ...or much later? Below is a statement from Professor Chris Higgins member of SEAC (Spongiform Encephalopathy Advisory Committee) from a article he wrote in the 'Biomedical Scientist' January 2007. Professor Chris Higgins 'For unexplained reasons vCJD affects young people disproportionately, with the vast majority being under the aged of 30 years old at diagnosis' 'There are no unexplained reasons just information that is not being shared with the general public, we are still not being told the truth about vCJD how many have and will die of this horrific acquired disease? And how long and where BSE toxic infected material was in the food and medicine chain? Wednesday 24 t h June 2009

'WHAT WILL SURVIVE OF US IS LOVE' (Phillip Larkin)

Thursday 18t h June 2009 On Wednesday 10 th June I attended the 'Coalition on Blood Safety' in Westminster. Here is a photo of me and Pete Buckland at the House of Commons before we went into the meeting. Peter lost his only son Mark to vCJD through a blood transfusion. (see Marks graduation photo) Mark died of vCJD aged 32 in May 2006. For three years of his illness Mark had been treated and told he was suffering from ME (chronic fatigue syndrome). Even though Marks blood donor had died of vCJD in 2000 just twenty months after he had donated blood, both Mark and his GP were kept in the dark about these facts.
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At Mark Bucklands inquest the Coroner recorded that Mr. Buckland deserved to be told the truth sooner. A high level committee within the Department of Health took the decision not to inform Mark Buckland, his GP or the 65 plus other people who had received contaminated blood, apparently their reasoning being there was no test or cure. But what about the human right to know whether you are carrying or infected with a deadly disease? As Marks sister Gina said Mark spent three years of his life fighting to find a cure for a disease that he didnt have, and there were people who knew he didnt have it she continued He had a right to know he was going to die he would have had the chance to do things like travel the world instead. I believe this cover- up was never about protecting Mark Buckland but protecting the Department of Health, those named and shamed on this website and commercial interests. Ironically Mark had been a vegetarian since his teens and was only informed about his blood donor dying of vCJD in 2004. Very worried his anxieties were brushed aside with the comment that there was nothing to worry about as the risk was one in a 1,000. By the time Mark was given this devastating news he was already dying he had been forced to give up work, was losing his memory his balance and co ordination. Within two years of that false reassurance Mark was dead at just 32 years old. Two other recipients of the contaminated blood have also gone on to die of vCJD. The other recipients live daily with the fear that they too are at risk of developing vCJD. Once again victims, and their families were lied to and the real truth about vCJD this time transmitted through blood donation kept secret from the British public. As parents who have lost their only sons to vCJD, Pete and I share a burning need to continue to search for the truth and find the answers. I am hoping by joining forces with the thousands of other people affected by vCJD that we can eliminate the culture of secrecy that killed our loved ones. Government policy has a duty of care towards the UK publics health and well being, what we need is transparency and openness to transform political and personal agendas.public servants should protect and keep the British public safe and Government policy should always put human health first. To paraphrase Lord Archer: Commercial interests should never ever come before human lives. Coalit ion on Blood Saf et yAIMS. The coalition has been set up to bring together stakeholders who have an interest in the issue of blood safety in order: 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 into contaminated blood 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 context of the issue
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Tuesday 16t h June 2008 Here is a photo of Emma (second left) and me at our bed and breakfast in Skiathos, one of the Greek islands where the film Mama Mia was set. The people with us are family members of our hosts Kostas and Mary who run a lovely very small hotel in Skiathos Town. I have visited many Greek Islands but can honestly say that Skiathos has a particular magic of its own. It was good to be on a Greek Island again to walk in the sunshine and talk to my daughter without interruptions. We shared memories of holidays past and talked about Emmas future plans. I am now rested, recharged and ready to continue the campaign, aware that balance in all things is essential. I am also so grateful to be part of Emmas life and to see her grow into a lovely young woman I am very proud of my number one and only daughter. Friday 12t h June 2009 Below are the minutes from the last 'Coalition on Blood Safety' group that I attended in March at the House of Commons, Westminster. Dr Burton (2) comments on the UKs latest tonsil and appendices retrieval of 50,000 tissues that were collected and tested for vCJD. Of these 50,000 cases not one was found positive for vCJD. However this should not be seen in isolation because as Professor Mark Turner SABTO (Safety of Blood Tissues and Organs committee) stated 12,674 tonsils and appendices were tested anonymously at Derriford Hospital Plymouth (2004) three individuals showed signs of vCJD. Professor Turner continued We should not dismiss the Derriford findings which are significant.' I was also told that if my Andrews tonsils had been examined just a few years before he became ill his tonsils may well not have shown any signs of vCJD. Also in some primates orally inoculated with BSE they do not show signs of vCJD in their tonsils till after death. A haemophiliac recently died of an unrelated illness but he had been exposed to blood products from a donor that went on to die of vCJD. At Post Mortem the haemophiliac was found to be harbouring vCJD in his spleen. Although the haemophiliac showed no symptoms of vCJD during his lifetime he was silently carrying vCJD and had the potential to pass the deadly infection onwards. Government policy and research has a duty of care to protect the British publics health and prevent further deaths of vCJD through blood, I am hoping by being part of groups like these we will be listened to, heard and our views, opinions, expertise and experiences will be taken on board. Government and Whitehall have within their power to implement screening of all blood donations for vCJD...this will undoubtedly save lives .. why is the Department of Health delaying? Coalit ion on Blood Saf et y meet ing Lessons f rom t he Archer Report Commit t ee Room 21, House of Commons Tuesday 31 March 2009 At t endees Earl Howe (Chair) House of Lords Lord Archer of Sandwell House of Lords
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Professor Az ra Ghani Imperial College Brian Iddon MP House of Commons Baroness Masham House of Lords John Grogan MP House of Commons Dr Geoffrey Poole Welsh Blood Service Iwona Walicka MacoPharma Marcel Thomasin MacoPharma Dr Steve Burton ProMetic Andrew March Christine Lord Justice for Andy Campaign Matt Gregory Haemophilia Society Jane Allen Hepatitis C Trust Hannah Cohen British Society for Haematology Representatives from Connect Public Affairs, provide secretariat support to the coalition 1. Opening comment s Earl Howe chaired the meeting, and opened by summarising the aims of the Coalition on Blood Safety and introducing the main speakers, Lord Archer and Professor Az ra Ghani. He stated that the contamination of haemophiliacs is one of the greatest disasters that has befallen the NHS. 2. Present at ions Lord Archer Lord Archer noted that victims of the disaster have been calling for a Government inquiry for a long time, but with no success. In essence, his report examined both the lessons to be learned and what could be done now. He reflected that the UKs initial attempts to import plasma were hampered by limited domestic facilities available to treat the plasma. In fact, despite Ireland becoming self- sufficient in five years, the UK took 20 years. The UK was unable to meet domestic demand and began to import risky US blood products, thus increasing the risk of infection. Various diagnostic tests for both donors and products were explored in the 1980s as a potential solution. The USA had surrogate tests which were not very accurate and the UK didnt wish to use these tests, instead preferring to wait to use specific tests. Scientists were unsure of the infections causes, as were politicians who on reflection he said should have erred on the side of safety. Lord Archer highlighted the issue that Hepatitis C and AIDS affect sufferers earning capacity. He also said that the Government has never been held properly accountable on the matter. He believes that if there is a doubt about safety, action should be taken. Professor Az ra Ghani
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Professor Ghani highlighted that vCJD was first noticed in 1996, the cases were amongst relatively young people and slightly different to CJD. These specific cases were related to BSE and scrapie in sheep. She explained the scientific context to the disease, and noted that the prion has been established as an infectious agent that can transmit the disease during the last 10- 15 years. The prion is different from viruses and bacteria as it is more resilient. Professor Ghani reported that there have been 164 deaths from vCJD, with 64 victims still alive (the incubation period is long). However, she highlighted that it is difficult to assess the onward risk due to the incubation period and so we dont know how many people are potentially infected. 18 of the reported cases could be traced back to blood centres. Thus the risks of this kind of exposure and how to deal with it were a concern. A risk to the blood supply had occurred to a first wave of victims, and there was a possibility of subsequent waves of infection. Red cell transfusion has resulted in vCJD transmission, resulting in three clinical cases. The most important measure put in place to reduce the risk is leucodepletion but this is only 40% effective at reducing the risk. She noted that the US has not experienced a BSE epidemic. In the UK, those who have received blood since 1980 cannot donate. She inferred that a blood test to screen blood supply would be ideal, although said that this was an under- developed technology and that the science was not yet sufficiently robust. 3.&nbs p; Quest ions f rom at t endees 3.1 vCJD prevalence levels Christine Lord commented that it had been thought that only one genotype was at risk, but that this had recently been disproved. She said she was concerned about a lack of resources and urgency especially in reference to blood transfusions. Prof. Ghani replied that this was something she and her colleagues had been seeking and said that without a test it will be hard to make progress. Lord Archer asked how far it was possible to keep records from donor to recipient, so we can identify the source of infection. Prof. Ghani said that she thought that the records were in place, so we can tell where infections are coming from, but re- emphasised you cant usually tell if someone has the disease due to the long incubation period. Steve Burton stated that most test cases are from animals, and that at a meeting at the Prion 2008 conference, there was discussion about the result of recent tests on monkeys that indicate that the blood becomes infectious early on during the disease. He noted the talk of first and second waves, but pointed out that testing in terms of chemical measures shows that blood could be extremely infectious. The issue with the test is that even if a donor tests negative, this may be because there is not enough infectious prion in the blood to detect by the test but enough to pass on the disease. Earl Howe asked questions about how the incubation period for vCJD can be measured. Prof. Ghani responded that this is done by looking at animals over periods of time, although she admitted that we cant extrapolate out from mice studies. Dr Burton later referred to the prevalence studies of tonsils and appendices. Prof. Ghani responded that 80% of the cases tested in the prevalence studies were in the 20- 30 age cohort. Around 50,000 tissues had been tested so far and no cases of vCJD had been found. The prevalence rate is still unknown. 3.2 vCJD st at ist ics and Depart ment of Healt h Christine Lord commented that there had been some ring- fencing of the statistics by the Department of Health, especially around vCJD, and she referred to her concerns around the culture of secrecy that existed. Earl Howe replied that the Department had been very good at collecting such information. Prof. Ghani added that the probable cases were published by the department, and that although this is a controversial word it is really just a technical term. 3.3 Appropriat e use of blood t ransf usions Brian Iddon MP argued that some haemophiliacs didnt need to be given blood transfusions, and asked if the Government should
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restrict the use of blood products to this end. Lord Archer said that it is for a doctor to assess if this risk should be taken, raising the point as to whether doctors should be retrained. Matt Gregory stated that the doctors prescribing treatment are expert specialist haematologists. Hannah Cohen added to this by saying that the doctors in question received specialist training. Furthermore, work is being done to ensure that blood products are not used unless necessary and more training in the appropriate use of blood amongst transfusion communities was required. Baroness Masham queried how ma ny partners of haemophilia sufferers had contracted the disease, to which Lord Archer said that this information isnt available. 3.4 Current st eps in place Christine Lord said that she would like to see testing used as there is currently too much secrecy, with the disease now almost considered the new AIDS. She described it as a ticking health time bomb. Earl Howe said that he thought most health ministers had wanted to give maximum exposure to the disease, and that it would be a disaster to try and cover it up. He asked what could be done to promote the case to Ministers. Iwona Walicka spoke about the differences between the test and the filter. She commented that the filter is a preventative solution, whereas there are some problems with the test, such as the issue of people being given a false positive result which would be a disaster for the blood donor. In addition, the prion filter has been CE- marked since 2006, which means that it can be used legally in the UK. Dr Geoffrey Poole commented that the blood services do spend a lot of money trying to protect people. In reference to vCJD he said that advice is being sought from SaBTO, who are gauging the current risks and costs of further infection and risk reduction measures. He said that the importation of red cells would pose significant logistical difficulties, advice had not been forthcoming regarding alternatives such as filtration and testing, and that the blood services are awaiting the advice from SaBTO. There was a short discussion about the role of SaBTO, its upcoming meeting at the end of April, and the possibility of inviting SaBTO members to future meetings. 4 . Summary of meet ing and next st eps Earl Howe said that the discussion on this issue will continue, and that the next step is to determine how the coalition should move forward with its aims. The next meeting will be in May/June looking at the international experience of blood safety. Earl Howe indicated that the coalition should write to the Minister (Rt Hon Dawn Primarolo MP) alerting her to the meeting and to the aims of the coalition. Monday 8t h June 2009 Written by Suz i Leather MBE statement to the BSE Inquiry Weds 28th October 1998 I remember at one panel meeting the Chief Food Scientist Dr Howard Denner saying that 'ON THE WHOLE RESEARCH (into bse) WAS COMMISSIONED IN ORDER TO PROTECT MINISTERS'
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This research was commissioned by MAFF, interpreted by Scientists employed by MAFF and the data presented to the public by MAFF. Selective research was fed to a unsuspecting public, outside independent scientists were excluded and MAFF owned every diseased head of every BSE infected cow. Suz ie Leather continues in her statement: 'Another issue was the demand from Ministers to avoid 'unnecessary' costs to industry; they were adamant that costs to industry should be minimised. It was an era when regulation (even food safety regulation) tended to be characterised by Ministers.' Wednesday 3rd June 2009 Below is an extract from the Phillips Inquiry from Stephen Cramptom who gave evidence on Wednesday 28th October 1998. It highlights the intimidation and aggression that Ministers and Officials would use to silence groups and individuals who dared to 'CRITICISE GOVERNMENT STATEMENTS AND POLITICS ON BSE' When I read statements such as these, ,conduct interviews with individuals who there at the heart of Whitehall throughout BSE it feels more like a police state than a supposed democracy. Threats of imprisonment and worse were directed at many..... The words 'very very careful' (see paragraph 4) have resonance with me ...during my second meeting and interview with John Gummer he told me to 'be careful'.....regarding what I was saying about MAFF and his role in the BSE scandal. I challenged him asking 'Are you threatening me? he didnt answer. This exchange took place barely fourteen weeks after my Andrew had died of vCJD. I know other families have been intimidated by government officials to keep quiet, not speak to the press and have been so frightened they will only speak to me 'off the record'. This only highlights to me the scale of the conspiracy and corruption surrounding BSE and the huge amount of money, prestige, and status that those responsible for killing my son have to loose.

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Monday 25t h May 2009 I was recently asked to be a contributor on Portsmouths Hospital Radio Station as part of their version of Desert Island Discs. A regular hour long show, which has been running for decades in which a different weekly guest talks about their life, work and dreams accompanied by five of their favourite CDs. Mike Underdown and David Best have been co presenting the show for over 30 years and have volunteered their services on the airwaves to make hospital patients across Portsmouth stay on the wards, a little brighter. I talked about the campaign, Andrew and vCJD and the wonderful support I have and continue to have from the UK public and globally. I also spoke about my career and life in Portsmouth as well as talking at length about my trips to South Korea and Northern Ireland. I recollected the many countries Emma, Andrew and I have visited over the years from toddlers I had taken my children on frequent trips outside the UK. It was at times a very moving experience to remember my little family of three when we were
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all together and Andrew was well. Here is a photo of me and David in the studio, I chose six records two of which Yellow by Coldplay the last song Andrew ever sang to me as he lay motionless in bed., and Somewhere over the Rainbow were particularly poignant.. It was fitting that I took part in the programme based at the very hospital where Andrew was born on 2 nd September 1983 at 1:20pm on a Friday afternoon, weighing a healthy 7 lbs 12 oz s. Mike and David have a wonderful dedication to Hospital Radio its listeners and to music programming, long may they continue broadcasting. Friday 22nd May 2009 Here is a recent email from Ian Collins Presenter talkSPORT national radio. This was the radio station that gave Andrew his first experience working in London, he worked for many years on Ians overnight show 'the creatures of the night'. I am so proud of all my son achieved in his too short life, his light shone brightly if only for a little while. Hi Christine It's so reassuring to hear that you continue to fight this cause. We all miss Andy so much here but his memory lives on in such a strong way and we regular refer to those great moments together on air. Am so pleased that the documentary has been rightly recognised in the TV world; it's entirely right that it is. Ian Thursday 21st May 2009 By the time you read this,. I will be on a sun drenched island in the Mediterranean with my daughter Emma. This is the first time since Andrew died that we have had time to spend alone, and it will be wonderful to be with my beautiful daughter Emma, to walk along deserted beaches, to eat under the stars and to talk with no interruptions. My daughter has been so brave and strong , I am so very proud of her and everything she has achieved in her first year at University. Together we have to try and get our lives back on track and to move forward knowing that this is what my son Andrew and her brother would have wanted. I hope to return recharged and rested which will enable me to continue with the campaign and my investigations. I am filming, photographing and recording everyone we meet and everything we see as I normally do when on holiday, so this will no doubt form part of the next documentary and my forthcoming book. Wednesday 20t h May 2009 More than 800 haemophilia patients have received blood from donors who developed the human form of mad cow disease, the Government has admitted. http://www.telegraph.co.uk/health/healthnews/5335252/802- haemophilia- patients- at- risk- from- vCJD.html
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Monday 18t h May 2009 Here is a photo of Andrew in Union Square San Francisco USA taken on one of the last family holidays we all spent together. He looks so well, confident and strong. I remember that day in San Francisco we were staying at Fishermans Wharf and Andrew, Emma and I spent the day shopping, riding on the cable cars and enjoying the hospitality and warmth of the San Francisco citiz ens. During out stay we did all the tourist things taking a boat across the bay to Alcatraz , visiting the golden gate, despite being August the famous fog enveloped the bridge and generally having a great time. I remember me taking this photo and Andrew, Emma and I laughing and laughing. I miss those days and my son so much. Tuesday 12t h May 2009 FROM : The Sunday Telegraph May 10th 2009 TORY WENT HUNTING FOR MOLES ON EXPENSES John Gummer has been exposed fiddling his MPs expenses making the tax payer fund amongst other things roof repairs, cleaning and 9,000 a year for gardening. From wood chopping, removing jackdaws nests, rodents and getting rid of moles from his landscaped lawns. Every tax payer including myself in the UK has been footing the bill for Mr Gummers luxurious and pampered life style. Officials in the House of Commons Fees Office were concerned that Gummer was not producing receipts to justify many of his claims. Writing his own receipts Gummer claimed thousands of pounds for maintenance on his mansion in Suffolk. These annual statements are almost identical claiming payments for gardeners, cleaners and other people working for him on his country estate. His second home claims since 2004 has cost the British Tax Payer at least 90,000. In the past Gummer also claimed 200 a month towards the interest on the loan at The Grange in Suffolk. Gummer told the Sunday Telegraph The purpose of providing money for a second home is to enable a MP to fulfil his constituency duties efficiently and properly and its in that spirit that I have made my claims. I know that the victims of vCJD and their families who live in Gummers constituency Suffolk Coastal are like me despairing, angry and appalled that the Minister who got away with killing our loved ones .seems to have made a killing with his expenses and is laughing all the way to the bank.and his stately pile. Friday 8t h May 2009 I have been informed by his family that another YOUNG VICTIM OF VCJD JUST 22 years old DIED YESTERDAY MORNING THURSDAY 7TH MAY 2009 AT 7am. His family are devastated,..... another wrecked life,...... another stolen future.
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This young man who has just died of vCJD like my Andrew will never , ever be forgotten or a mute statistic to me and supporters of the campaign. All victims of vCJD past, present and those unfortunately to come will be remembered and the campaign will be their voice. I will continue to pursue those Ministers and Officials NAMED AND SHAMED on this website relentlessly UNTIL THEY ARE PUBLICY AND LEGALLY ACCOUNTABLE FOR KILLING SO MANY INNOCENT VICTIMS.....THEY ALL SHOULD BE IN PRISON. My thoughts and prayers are with this young mans family, may your god protect and guide you through these dark days. Tuesday 5t h May 2009 I receive thousands of emails via this website from all over the world. As I have reported before on this blog .....cases of sporadic or naturally occurring CJD and dementia are rising dramatically across the globe and this strongly correlates with BSE material in the food and medicine chain. Below is an edited version of one of the many emails that I have received in a similar vein from the USA... It is strikingly clear that the US is not safe from BSE and I believe there are likely many unreported cases of vCJD already occurring in this country. I think anyone who still believes there is not a problem in this country is grossly misinformed. You really have to look past what the government and the USDA are telling the public about BSE and CJD and look at what is happening. B (USA) Tuesday 28t h April 2009 Lives will be saved if donated blood is screened for vCJD. There is a test available but the Department of Health are stalling.. The test is by a company called Amorfix who have already screened 10,000 blood donors in France. I asked my MP Mike Hancock to table some questions on my behalf to the Minister of Health. Below are the questions and her answers. As a parent who has lost their only son to vCJD if we screen donated blood we can prevent further deaths and a possible 'SECONDARY SELF SUSTAINING EPIDEMIC THROUGH BLOOD. (Dr Hester Ward SABTO (SAFETY OF BLOOD TISSUES AND ORGANS) October 2008) At least 18 blood donors who gave blood for many years went on to develop and die of vCJD...and with 'PROBABLY ONE IN A THOUSAND OF THE UK POPULATION CARRYING VCJD' (Professor John Collinge UCL) , there may well be a 'POOL' of individuals silently incubating vCJD who will never become ill with the disease but have the potential to pass it onwards to others through donated blood, tissues, cells or organs. With this blog is the photo of Andrew taken the day before he died this is the reality of vCJD....if we screen donated blood people will not again die needlessly .... A culture of secrecy killed my only son....its now time for transparency, openness and proactive decision making by the Department of Health. False reassurances and rhetoric by Ministers in the 1980s and 1990s killed my Andrew. In the 21st
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century the UK public should be protected and blood products should be safe and free of the rogue prions that cause vCJD, its the DOH duty of care to keep the UK public safe and to prevent further deaths. Yet they have been preventing companies working on tests from accessing human vCJD samples..and in the process stopping the validation of these tests! Some of these samples may well include bloods from my beloved Andrew! which I allowed the DOH to retain with the understanding they would be used in research and to help find treatments, tests and cures. Last week Amorfix which was featured on BBC2 newsnight in February 2009 was finally allowed to present its test and findings to the NHS, CJD Unit and various departments in Whitehall....hopefully this means that validation of this test is now very close. I will keep you posted.... My Andrews samples may well be some of those used in this validation process and as his mother I want some of his last physical remains to hopefully save lives in the future.. ..this will then be a true legacy for my beloved boy ....and its what he would have wanted....

CJD: Screening
Mr. Hancock: To ask the Secretary of State for Health pursuant to the answer of 27 March 2009, Official Report , columns 756- 7W, on CJD: screening, what the criteria are for validation of a test for variant Creuz feldt- Jakob disease. Dawn Primarolo: Any item of equipment for a variant Creutz feldt- Jakob disease test kit must meet the essential safety requirements specified in the In Vitro Diagnostic Medical Devices Directive. The device must perform as intended by the manufacturer and meet criteria relating to sensitivity, specificity, accuracy, repeatability and reproducibility. Mr. Hancock: To ask the Secretary of State for Health what rights family members of those who have died of variant Creuz feldt- Jakob disease (vCJD) have in relation to the use of their relatives' blood samples for the purposes of (a) research into and (b) validation of a blood screening test for vCJD. Dawn Primarolo: Such samples can only be used for the purposes for which consent was given. Consent may be withdrawn at any time. Mr. Hancock: To ask the Secretary of State for Health pursuant to the answer of 27 March 2009, Official Report , column 757W, on blood donation screening, if he will make an assessment of the merits of giving access to blood samples of those who have died of variant Creuz feldt- Jakob disease (vCJD) to companies which have developed a blood screening test for vCJD. Dawn Primarolo: A process, overseen by the independent OD Resource Centre Oversight Committee, is already in place to enable appropriate access to the small number of blood samples from variant Creutz feldt- Jakob (vGD) disease patients. Companies developing vCJD screening tests are already participating in this process. Monday 27t h April 2009 The BBC1 documentary for InsideOut South titled 'who killed my son?' in which I filmed Andrews last days and my fight for justice, was entered for the circom awards. This prestigious
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competition is for all the regional TV stations across Europe. There were 42 entries and ANDREWS DOCUMENTARY CAME SECOND. Click on this link to read the results http://www.circom- regional.org/about/1- prix.asp. The judges comments were very good, here are some of them below: The story tells of a search by one mother for the answers to the disease vCJD. The Son of Christine Lord was diagnosed with this disease and he died the same year. The makers and the mother create a powerful story. The use of a personal diary is original because it gives the documentary something extra. It put the viewers into the house during the whole process and at the same time there is still a distance to protect the boys privacy. At the same time, the mother is a professional and she is doing research demanding answers as a journalist as well as a mother. There is a good use of different styles, diary, archive interviews and drama. This mixture delivers a real good story - and we cant find any 'howevers....' Wednesday 22nd April 2009 People often ask me where I get the strength and determination to continue the campaign and my pursuit of justice and the truth. Below is an extract from my diaries ...which explains why I will never ever relent until those responsible are publicly and legally accountable for my beloved boys death. AUGUST 5th 2007 Andrew is very distressed, I have had to keep him calm and reassure him most of the afternoon. I hold his hand stroke his face and talk to him quietly .... Suddenly Andrew almost shouting says ' Sue them Mum....for the hell that is my life...I must be able to walk and talk ....I must be normal and stand again'. very agitated he continued ' Sue the people that made me like this.....promise me......(his violet eyes so troubled and so frightened) ...'I cant remember...I get confused...but promise me.....I be dead next year.....find out who did this to me and expose them'. I reply as my heart continues to break ' I promise you'....and I hold his hand as today even a cuddle is painful as the horrific vCJD continues to wreck and devastate his once fit and strong young body. ...... Andrew looks at me and says 'Help me leave this crappy place....how much longer have I to be in this crappy place'. Outside the bedroom which has become his prison....its a brilliant summers day, childrens voices, laughter can be heard , birds are singing ....my beautiful boy will never live to see another August 5th...as he so rightly said this time next year he will be lying in a grave......
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Andrew can no longer cry properly ....the muscles in his face no longer work very well....I see two tears squeez ed out of his eyes and fall onto the sheet...that is covering his ever frail body...... Friday 17t h April 2009 I have always kept a diary and from the time Andrew became ill I continued to write about the terrible nightmare that was unfolding within my little family. I am writing and editing these diaries and photos for my book. As I retrace Andrews dying days...once again I am reliving his slow and torturous death. Once again I seem my Andrews determination to 'get better' and go back to the young man he once was...once again I hear my encouraging voice reassuring him during the severe pain and panic attacks which are symptoms of the disease. ..all the time knowing that he will never 'get better'...... There are pages and pages in which I describe the countless bottles of medication, tests, hospital visits and procedures all suffered by my 23 year old son .... I watch over my son as he tries to gain strength tries to become how he was....he eats constantly, keeps trying to walk and move about to gain his 'STRENGTH' to get back to the young man he once was....and all the time I hold his hand, reassure ... ...knowing that the raft of tests are not about cure but about confirming his death sentence.... vCJD. I write in my diary the day Andrews diagnosis is confirmed....June 6th 2007 photo with this blog is taken at Southampton general hospital the day of diagnosis..... ' As I arrived at the hospital a nurse took me into a side room just yards from where Andrew was lying in bed. I knew the news wouldnt be good ....as I sat down .......I noticed Andrews consultant, a registrar and another nurse was in attendance..... Andrews consultant told me briefly that the battery of tests they had carried out including a painful lumbar puncture had revealed that Andrew had vCJD... and that he would become totally immobile, bedridden and demented and within months would be dead. The consultant told me there was no treatment all I could do was take Andrew home and love him....he told me ' We were hoping for something like secondary brain cancer because then there would be a chance for treatment.' .... Andrews consultant was very angry at my sons illness and what had caused it he told me ' a stray burger didnt cause this'. Shocked and numb ...I didnt cry I couldnt cry....my son was waiting to hear what the consultant had told me....I excused myself and went to the loo...silent tears started to fall but I quickly brushed them aside...put on my brightest lipstick ....left the safety of the ladies toilet and strode down the ward with my head held high, smiling to greet my waiting son...... 'What did he say mum? Andrew asked me.... How could I take away hope from my 23 year old son? How could I not give him hope even for that day, that week that hour? I also didnt want him to be frightened....so I made the decision that Andrew wouldnt know he was dying and wouldnt know what was wrong with him...so I said ' Its a severe virus which will make you poorly for a while,. but you are coming home tomorrow and I look after you'. Relief, trust and hope crossed my sons face...... and he smiled........ I spent the next 9 hours at his bedside laughing smiling and making Andrew feel safe....because even when their hearts are breaking
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....thats what mums do.....

"One in a t housand of t he UK populat ion could be carrying vCJD." (Professor John Collinge,March 2008)
To wat ch t he document ary please use t his link www.bbc.co.uk/mediaselector/check/england/realmedia/insideout/south/insideout? siz e=16x9&bgc=C0C0C0&nbram=1&bbram=1&nbwm=1&bbwm=1 Site Map

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