Information given by individuals to others as gossip

Because it is gossip it must not be considered to be the absolute truth until it is checked in some way. This must not be taken as an insult to anyone as none is intended. There are no evil people involved in the subject whatever and everyone has taken large amounts of time and effort in carrying out what they feel is the best

However, what seems the best for the farmer may not seem the best for the consumer and what is best for the politician to keep the populus calm may not be the whole of the information that the populus feels should have been given. (a lot of farmers are, however, very honest and I would not pretend that it applied to all).

Return to the index.
Go to the definitions page
Go to the gossip before July 1996, often still significant
Go to the gossip between July 1996 and November 1996, often still significant
Go to the gossip between November 1996 and May 1997
Go to the gossip between June 1997 and October 1997
Go to the gossip after February 1998
Dont forget to go to the news gossip sections

February 1998

SEAC's new members are moving in...but some unknown.

One of them is a legal lecturer from Guildford College and is being a person on the side of the consumer. She is likely to throw the cat among the pigeons really very fast and the Consumer Assn have realised that she will play her cards when needed.

Worries are appearing that the document being prepared by the DofH to tell doctors how to use blood sparingly will create horror stories within the press.

Haematologists are realising that if the plasma products were no acceptable as being safe then clearly a percentage of blood transfusions may not be either. It is probably this worry that is seeping through to the press rather than any solid data.

Assessment of risk from BSE still based on MAFF advice.

This came from the pharmaceutical industry's assessment of whether or not they should do something about BSE in their products. They decided that there was so little risk that they would be doing things just to make everyone feel better but for little actual value. They refused to accept the German Government's risk calculations (although they liked the methods) because it used levels of infectivity in bovine tissues that were too high. Well, in fact these were the levels that MAFF told to everyone else and were spread around by them. In fact the levels used by the Germans were correct. (it is not clear who is passing this data to the pharmaceutical industry - this was in the USA - but they may not realise that is is incorrect - Ed).

The report on the meeting by Tyrrell, Bradley and Wilesmith with Dealler and Lacey in 1993 is going to be released.

The document may turn out to be deaparately damning against Bradley the author and Tyrrell, who should have seen the errors of what was going on. Claims were made that they had tried to show Dealler and Lacey the error of their ways but did not get anywhere. What can now be seen is that Dealler and Lacey were right! This may turn out to be a major document.

It seems that a major fall in the usage of blood in the UK may be suggested.

There is going to be a clinical directive indicating the usage to which whole blood should be put in the UK and this will come from the DofH after they have got the information from SEAC as to whether whole blood (or even blood without leucocytes) should be considered a risk from nvCJD. It may have to be admitted that whole blood represents a risk (of unknown size) to the recipient and as such it is difficult to state that the blood is therapeutically advantagous in certain clinical conditions.

BPL are going to import plasma.

What they haven't indicated is the cost of doing it, and this is dramatically greater than the costs so far. What they think they are going to find is that it will be much cheaper simply to import the plasma products.

Blood products from UK to be banned abroad?

this has been suggested as being present in the European Committee on Proprietary Medical Products. No official document has come out from the committee yet but it seems likely. Also the worry has appeared that UK donors may be banned from other countries and that the UK government may be the group that asks its people not to give blood abroad. The politics of that must be horrific, so it is wondered whether it can in fact be true.

Drug companies building up interest in BSE.

their main problem is that the European market may ban all products that may contain bovine extracts. The Americans are furious and are going to come to the meeting being organised in London on the 10th of March (see 'Meetings') to try to work out a way to get around this, even though the date for complying has yet again been put back to the end of the year. The document from the Pharmaceutical Research and Manufacturers of America BSE Committee in BioPharm Jan 1998 p20-56 is a good examply of how worried (and annoyed) the pharmaceutical groups really are.

The end to UK pooled plasma products.

It seems that the Department of Health took reasonable action for the evidence that it had concerning the risks to humans; but continued to take MAFF-like positions such as 'there is no evidence that nvCJD can be transmitted by blood' and 'there is no evidence that any infection is present in nvCJD blood'....many because the research either cannot be carried out or has not been. The DofH put all this over as them bending over backwards to avoid any risk to humans and little data was put over to indicate the animal or risk levels that were being carried out. It seems that SEAC would be informed by the independent risk analysis group and that they would then inform the DofH of what further action need be taken...so all this may take some time. Mean time retrspective risk analyses do not seem to be being carried out and action taken on the results.

The announcement that factor 8 can be replaced by the recombinant factor 8 in the UK...

Well, already this had been decided by the Scottish, Welsh and Northern Ireland DofHs and the statement that it would only apply to haemophiliacs under 16 yrs and new cases, is soon to be changed in England so that all of them get the recombinant form. On 26th of Feb there was almost dancing in the streets by haemophiliac families and the press secretary decided that this was excellent. (The Haemohilia soc was told about the risks from CJD in 1994 - Ed).

DEATH ON THE MENU.

This book, written by Harash Narang, has recently become available and is a good insight into the personal lives of the patients that died of nvCJD..and some patients that may have died of the disease earlier but denied as such by the CJD Surveillance Unit. To obtain a copy look at the book section of the web site.

400,000 pounds being given to a Birmingham group to look for a treatment for CJD.

This is bound to come out now that there is a problem with blood transfusion.

Whitehall at risk?

Inside the walls of the ivory tower there is worry that the Inquiry into BSE may actually be going to find that Whitehall hid information from Ministers and Parliament. (I see no way that this is not going to happen unless fall-guys are found - ed)

The meetings of the European and local groups on safety of blood transfusion products have not produced a report

... Probably because it is too fast and these meetings were only a few weeks ago, but also, because it has been almost impossible without data from the DofH as to the risk analysis, the results of which are not ready.

Outbreak of insecurity with blood products in Birmingham following Dealler's lecture.

This took place towards the end of January to the haematologists of Birmingham and was discussed after he left. He went over the statistics of risk analysis and blood products. Apparently the drug companies are moving in for the kill with foreign derived products.

Announcement by DofH on blood product risk to be on 17.2.98.

Although this is just gossip, it is still not sure what they are going to say. It does not seem as if they are getting ready to put over that the risks are high in that they are not getting in touch with all the plasma companies to replace UK products. i.e. there is going to be an enormous fight afterwards. (this did not take place, probably because of the CPMP meeting - Ed)

Committee on Safety of Medicines meeting on blood transfusion products risks.

This meeting is taking place very soon and will potentially not have good news for UK producers. Some of the information that they are looking at is derived from Paul Brown's work in the USA, which indicates that UK blood products could not be declared as safe. The legal aspects of this are looking very worrying to the people on the board. The CSM is meeting at the DofH in the UK of course and this may not be good news as they may have to fulfill the regulations for Europe, who have already demanded that UK blood products that contain blood from nvCJD donors are considered a risk to the recipient.

Dont tell the recipients of the nvCJD donors that they may be infected.

This was the directive from the Department of Health (6.2.98) and was based generally on the fact that there was no way to find out if the person had become infected and no way to treat them anyway. They decided it would be ethcially better to allow the people to live in more blissful ignorance than depressed by the knowledge.

What is happening to the meat and bone meal?

Serious underground information suggests that it is not going to be incinerated at all but rather a large amount is to be simply used as landfill. This seems such an odd thing to do with something that can be incinerated that it seems strange. Statements have been made indicating that the Intervention Board in the UK is to incinerate it using its own power station burners but this cannot be found from the power companies. A fully safe burner is being produced independently but the IB seems to be taking little interest in it.

TV series on BSE.

This series (4 programs, weekly starting on 15.2.98 on BBC 2 at 8 pm) called Mad Cows and Englishmen, has taken around 18 months to produce and will be out at the same time as the Inquiry starts in public. As far as I can see it will not come out with good news for MAFF.

Meeting in Geneva.

In private but a few things came out of it that might interest...Dr. Dealler had all his bags stolen at the airport, various researchers were working so hard in their labs that they could only come for one of the days, and various good and bad news came out. Geneva high quality restaurant actually stated that the beef they were selling came from the USA!

Narang's book is now available.

This is the one that goes through cases of CJD before the nvCJD was admitted by the CJD Unit and indicates that there may have been cases before they realised it. The way to get a copy is to ring Harash Narang at 0191 281 5311 (or leave a message with someone there).

The major business meeting concerning BSE in London has decided to double.

By this I mean they had so many applicants to be in the audience (at over 1000 pounds each) that they decided it was better just to run the show twice! Once in March and again in June.

Phillips a legal opportunity to attack MAFF action?

It seems that the worry that some of the potential witnesses have had concerning Phillips may have decreased to some degree in that they have been offered legal advice by the inquiry and they may take this as an opportunity to bring out serious information into the public. The worry has always been about legal reprisals concerning the giving of information to the inquiry but if adequate legal advice is given this worry can maybe be avoided.

January 1998

Oprah Winfrey may have stopped the law.

The introduction in various states in the USA over the past few years of a law indicating that it was possible to be sued for making statements against a product may turn out to be unlawful. It looks as if the cattle ranchers in Texas may simply not win because the law that they were using to sue her might not have been valid due to the right of free speech in the US constitution.

The worry has appeared that information given to Phillips Inquiry may actually be a problem legally.

Phillips has got the word from the civil service that there will be no retrobution taken against people giving evidence. However they ask for information at the same time saying that legal problems with giving the data may appear in the future and so suggest that certain people may require legal advice before giving any inforamation that may put them at risk. This is certainly a major problem to some witnesses in that some of the things they may have to say, may not be confirmable by heavy proof and so they may be giving information that could be seen as libellous. More is likely to come of this. The way that MAFF made sure that as much of the information was present inside its own walls and that anyone giving it out was at risk will surely not change just by the gentleman's agreement between Phillips and the Civil Service. Many meetings were held in private, many researchers were told not to release any data; all will be a problem if someone makes a claim that cannot be demonstrated as correct without this data being released. The inability of Phillips to prevent retrobution against MAFF employees (or indeed any employees) must represent a major problem.

UK butchers are not carrying out the ban on beef on the bone.

The way this is being done in local butchers is by simply showing the meat as food for animals e.g. Tbone steak (for dog). This has not been approached by the Government yet.

Narang's book to be launched on 27.1.98.

This book makes it quite plain that nvCJD type illness had been going on for a few years before the increase in cases seen in 1995. He also claims that they should have realised there was a problem earlier and that a number of the cases were in people involved with the meat trade.

nvCJD meeting to take place at the same time as the starting of the Phillips Inquiry.

Apparently they will be meeting in the Methodist Church opposite to Westminster and they are going to be wanting blood!

Survey for chronic wasting disease in Rocky Mnt mule deer shows 6 per cent positive.

Apparently wildlife officials require that people shooting mule deer must deliver the head of the animal to them for diagnosis and this is how they know the percentage with the disease. The research is being done at the NIH at Hamilton, Montana. If the test proves positive, the hunter is advised to dump the rest of the carcass. Already they have started further research: inoculating the CWDD into cattle, and feeding it to them, and just letting the infected deer live in contact with cattle to see if the disease is transferred. This percentage is simply so high that a similar type of epidemic might be underway as has taken place with BSE. Up until recently CWDD in the wild was hardly reported at all and now may be prevalent in both mule deer and elk from Colorado and Wyoming. As many people are aware, the carcasses of deer hit by cars are taken for rendering, and various foods are left in the winter by local people for the animals. The worry is simply that a disease may be present and has become recycled in the same way as in BSE. It is also not clear how the result for the brain test will be given to the hunter quick enough for the carcass to either dumped or kept; it would need to be kept frozen at an abattoir and it is not clear that many of the hunters do this.

Belgian program on BSE.

This took up two slots, the first saying just what the disease was andhow it was not so marvellously going away as we would all think and the second part about the 32 year old man that appeared to die in Belgium of nvCJD in 1994. I am expecting a horror story to cross the channel.

Launch of the 'Mad Cow Crisis' book.

This came out edited by Scott Ratzan from the USA and is basically about the incredible mishandling by the UK Government. It was launched at the Houses of Parliament (with Simon Hughes, who wrote a chapter, MP Bermondsey) and was followed by a meal at the Oxford and Cambridge Club in Pall Mall. Quite a treat! See reviews of BSE books.

Bones in sugar?

I have heard charred beef bones are used as a bleach to whiten sugar (in the US). Also, "brown" sugar in the US is actually refined white sugar with molasses (treacle) added.

Possibly a case of nvCJD in Belgium.

This one sounds much more likely than previous ones abroad. It is in a 32 year old man and seems to have had similar clinical symptoms to the cases in the UK. No further details are available at the present time.

Assured British Meat Company.

Lord Linsay (Chair), plus David Naish (NFU), Richard Cracknell (Assn UK meat traders), Mike Taylor (Marks and Spencer), Brenda Dean, Anthony Diplock (Guys, Biochemistry). Voluntary organisation, started with 1.8 million from Government but is expected to be self funding eventually. ?anything from Public Health, ? from the Consumers Assn. Initial research was done by the Meat and Livestock Commission showing that an assurance of meat safety was what was required by the consumer but they cant have found out that a commercial quango with minor teeth was the way that the consumer would most respect. They say that the ABM was set up under pressure from the MLC to try to stop MAFF responsibility being passed across to groups involved with health and health assurance.

The ban on gelatine and tallow for pharmaceutic products was in the media several times in Holland last year. It is postponed to 1-4-1998.

As 80% of all products underwhich essential ones for preventing inmediate death would not be available anymore the dutch health minister asked the EU to consider to make exception for acute lifesaving products. (Although medicine should be safe I agree with her that the baby should not been thrown away with the bath water. I think it is better to take the risk of dying in the long run than to ban all medicine containing gelatine or tallow and let people die here and now.)

Dutch scrapie falling? doubtful.

In the Dutch Journal of Medicine from 29-3-1997 was an article called; CJD a year later. In this article is the phrase: It is significant that since the esthablishment of the registration duty for scrapie the amount of reports substancial has decreased and even stays behind at the estimated numbers. (note from Toos, Holland, Before the duty to report scrapie there was a research going on in wich sheepkeepers voluntarily did cooperate)

Compton's test for BSE is to go onto a commercial footing.

The system uses Delfia (a crafty method to look for labelled antibodies) to look for the prion protein in tissue and as such is going to be put forward by EG and G Wallac, the company from Finland that owns the right to Delfia. The person to get in touch with over this is Mr Dean at 01908 265744. Still under development.

The new food safety agency that is being announced today is expected to damage MAFF.

Although it is expected to be a forward looking group, it is not expected to be nice to MAFF's economics at all and for much of the research work to be taken out of MAFF's hands. This may actually be a good idea in that a lot of the research was involved in increasing output to such a degree that other risks were taken.

Lord Justice Phillips arrived yesterday.

They say that he still has no adequate scientific advisor for the inquiry and there is intense discussion in the background as to who should be invited to be considered. It would be very difficult to find someone with a completely open hand while there are so many groups of scientists in the field.

Possibility of Narang's test of use in corneal transplant donors.

The problem with these is that the rate of infection of the recipient may well be high if the donor is infected. Narang's test, although not 100% sensitive seems to be relatively specific for the disease. The idea of this is to be put forward to Moorfield discussion group.

Meetings soon concerning CJD and blood products. Three are taking place over the next week (2nd wk Jan): the Committee on Proprietary Medical Products (based at Canary Wharf in London), the Serious Hazards of Transfusion (at St. Mary's London), the Standing Advisory Committee on Transfusion Transmitted Infection is also meeting. Following the CPMP meeting there is likely to be a Biotechnology advisory group working on this for the CPMP with presenters of information coming from invited sources. (I was really quite surprised just how closed these meetings tend to be and how selected advice is taken - Ed).

Narang has issued his writ in the high court against the Public Health Laboratory Service with sinister claims.

He claims that he was told not to publish data and that this was because the information was not wanted to get out to other groups (including SEAC?). He says he apparently had reasonable information showing that a slightly different form of CJD had appeared in certain people exposed to beef but they did not want this to come out. The PHLS has not yet replied.

Confirmed case of nvCJD in a 57 year old.

This was confirmed at a meeting of neuropathologists at the beginning of January by Dr Ironside. No further data is available.

Dog in Norway did not have a TSE

The case reported last year in a dog turned out not to be related to BSE. The cat in Norway did have BSE and seems to have got it from eating imported cat food.

nvCJD in Mexico?

MEXICO CITY (Jan. 7) XINHUA - the health authorities of Mexico reported today that the human variant of the "mad cow" syndrome has been detected for the first time in the country. The disease was detected on a woman by physicians of the National Medical Center and was confirmed by experts from New York. It could be the first case in a Latin American country ever detected of the "mad cow" syndrome. Mexican physicians said that the woman could have gotten the disease in the United States after having eaten infected beef, although there is now some idea that the diease is associated with the injection of hormones. The health authorities have requested information on the disease from French, British and U.S. institutions. Enditem 08/01/98 02:40 GMT (beware, all the other cases such as this have turned out to be sporadic CJD - Ed)

Australian case of nvCJD turns out to be a meningitis.

The worry that a nvCJD case may have appeared in Western Australia (see below) has gone now that the pathology has not turned out to be positive.

The use of animal products in surgery.

A few people are looking for information regarding a CEN/TC 316 meeting on April 17, 1996. If you have any information regarding how they could get notes or other documentation of this meeting I would appreciate it. The reference states the European commission on BSE risks and CJD ordered the CEN committee 301010 section CEN/TC 316 create a standard for animal tissue used in medical devices. Any information would be appreciated.

200,000 ox brains used in UK in 1980s: an underestimate.

The author of the report, which was funded by MAFF and helped very much by a former member of the Meat and Livestock Commission, did not seem to realise that the removal of the brain from a cow head was really very easy with a band saw and that the brain had a price, which was part of offal prices and could be obtained through the society of offal producers (now defunct), which was then in Smithfield. The major food manufacturers said they did not use brain...but they may well have used offal and some of that was brain.

Importation of factor 8?

We hear that various groups are thinking of offering the Department of Health good deals for the supply of blood products. They seem to understand the mathematics of risk from CJD much better than locally and have not bothered with any ideas of leucodepletion (which seems really rather hopeful, even if every white cell is removed). The American Red Cross, for instance has products for sale.

Various groups now seem to be getting ready to supply information to the Phillips inquiry into BSE in the UK.

It seems that his administration team will be overrun with paper by the 12 of January, which is the official start of the inquiry.

Professor Pattison is now Sir Professor Pattison.

Probably the person that made the difference to SEAC so that it worked and organised itself.

---

December 1997

Oprah Winfrey's vs Texas cattleranchers starts on 20th Jan

To read what Oprah and her guests said see PR Watch Volume 4,#2 which investigates industry censorship. It is on the world-wide web at http://www.prwatch.o rg/97-Q2/TOC.html
This site is organised by John Stauber, who has done a lot of work to look for the risks to people from food and food products.

Transfusion haematologists taking a realistic view of UK blood products: but they think that foreign ones may turn out to be worse.

The worry going around is that there may well be quite a lot of nvCJD in other countries too, but early in the incubation period. Also, there is a 'black market' in plasma, which has been coming from the far east, from Russia and various other places with inadequate testing techniques. The worry has simply been that these places have rapidly rising HIV levels (e.g. some of the parts of the old USSR) and this will mean that some serum will be negative for antibodies for HIV but still be infective. The feeling is that there the UK supply may be between a CJD devil of unknown proportions and the deep blue sea of poorly tested foreign sources.

BSE in sheep?

A claim has been made by a local Suffolk country man that he has seen BSE-like symptoms in a sheep that had been fed with scraps of human food. The sheep had no post mortem examination and so he could not be sure. He also says that the pigs that have been exposed would not live to the right age groups to show symptoms. The information was given to the Central Veterinary Lab but not response has appeared. Address available.

CJD in a young person in Perth, Australia.

The patient has not yet died but apparently is expected to be dying of nvCJD according to the journalists. The neurologist, Graeme Hankey is not so certain and expects to have a PM on her. See http://www.wantr ee.com.au/~rabbit/cjd.htm.

External blood products could be provided to the UK for little more than the cost of buying them from UK manufacturers.

BPL have probably been aware that their costs were lower than those from abroad but it now seems that the other companies are getting ready to bid for the UK market with products that are not a risk from nvCJD.

The recipients of the corneal grafts from a person with CJD will have the grafts removed.

Officials had been saying that the risks were 'minimal' and that there was 'no evidence that any infection would take place'. CJD experts were quite aware that the risk was probably high and that there was little that could be done at that stage because the grafts were put in place several months ago. The response in the editorial in the BMJ stating that the risks should be considered as being minimal for nvCJD in corneal grafts in the future was not followed up by the scientists in CJD who would have warned that although we have only seen around 25 cases so far the number incubating the disease may actually be quite high. The major problem is always that the incubating period following grafting is low, possibly 18 months and so the transplantation into older people is not decrease the problem. The authors of the articles in the BMJ have now been made aware of the actual risk associated with nvCJD and another article may appear later.

Lord Justice Phillips to have a scientific and a public health advisor.

This would seem almost necessary as the subject is simply so complex that it cannot be understood by a lawyer stepping into the scene. The worry by all in the scene is that the advisors will be from one camp or another. How they will find anyone that can stand up straight and be certain of their science is not clear. Phillips will be out of the country until the second week in January and the inquiry is to be based outside the MAFF. Public documents are to be released as required by him. Many people, however are worrying that the scientists will feel heavy pressure put on them to say what MAFF would like them to say.

Stopping of all external bids for incineration of MBM.

It appears that some of them were so expensive and some of them so incompitent that they cannot possible be accepted. Many of the bids were unacceptable by the DTI and Intervention Board, who are determined that the Power Generators are the ones who will do the incineration.

Not the power generators that are to incinerate the MBM.

It now seems that both National Power and Powergen have not agreed to incinerate the material and it seems to be being done by a powerstation type incinerator of the DTI themselves. Information is not being released about this. Exactly what is going on is unclear as the temperatures required for the incineration are reached for only a short period in powerstation type incinerators. For contacts see intervention board

The intervention board has cancelled all bids for burning rendering products.

This has just taken place and means that all these small incinerators around the country that have been fought over may never take place. The sudden turn around, presumably came through the Department of Trade and Industry and must have involved the demonstration of low risks to staff at power stations as that was the problem initially along with the very high prices that Powergen and National Power were thinking of charging.

Anti Rhesus factor shortage in the world is given as the reason why it is not imported: It turns out that this is not true.

There is no shortage of anti-D but the reason that it is not so fully availble is that the product that we use is derived from tested donors rather than from immunised volunteers, as happens in Canada. Octapharma have said that they can supply all of UK's needs from Canada. The risk to young women from anti-D has not been put out to anyone so far but it will hit the press fairly soon.

Was the corneal graft donor actually found as a CJD case by the screening procedure now happening at the CJD surveillance unit?

It was only announced in December that the unit was actually looking at many brains apart from the neurological cases. Suddenly this case in a 53 yr old woman with lung cancer is announced as having CJD. Doctors simply cannot think why she got the neuropathology carried out anyway...unless it was the screening.

Bioproducts Ltd (BPL) may be on the brink of collapse?

Factor 8 in UK: 160 million units are used, and of that BPL supplies about 100 million but the Haemophilia directors are demanding artificial products. Gamma globulins are going to be difficult to use with suppliers from elsewhere showing that their products are not a risk. Albumin can be imported easily. Fresh frozen plasma can be handled as bag by bag products i.e. not mixed. What will they do? The talk is that they will either close or import plasma to process. The problem with that one is that various huge companies are already covering the resources of plasma and BPL will find it difficult to find a supplier in a rapid way. Also, they will have to buy the plasma and that will put their product costs as greater than those of the foreign companies.

Immunogical groups decide not to take any action about nvCJD risk meantime.

This was as a result of the potential risks from mixed IgG made out of UK plasma. They said that they would make further decisions based on more data from Government sources.

Public Inquiry to be announced on 17.12.97

They say that it will be announced at the same time as the decision not to give the farmers much money in compensation.

Worlingham BSE cull Incinerator in Suffolk by Bronzeaok Thermal Processing Limited.

I heard this week that owners of the land which Bronzeoak wanted to build on will not sell to them. Good News? Not really because I have just heard today that Bronzeoak is still going ahead with the written Inquiry and has 2 possible sites in mind if negotiations with the owner of the old site will not sell to them. If any one has any information about Techtrol Incinerators or Incinerators in general that might help us stop Bronzeoak from building in Worlingham, a nice village surrounded by large towns, please write to me David Hallows, 22 Manor Close, Worlingham, Beccles, Suffolk. NR34 7RX or Telephone 01502 714508 (this is acting as a notice board - Ed)

Gamma Globulin horror story may well appear soon.

The fact that 2.2 million doses of gamma globulin have been used in the UK since 1989 may well hit the press soon and through the major audience type ones. One journalist is chasing it up very hard and it seems that it is such a huge story that he will be difficult to stop.

The second BSE case in Belgium.

Large amounts of finger pointing with this one but it really does not seem to be associated with the UK.

Bone marrow products can be imported but the bones cannot.

All very complex and probably due to the UK Government just not realising what was going on. It is still not clear whether or not gelatin can be eaten in the UK at any risk at all. It seems as if this is not being fully discussed in the media except the Guardian.

Wanted! Beef on the bone. Protect your right to choose. Sign our petition against the ban now.

This document issued by the National Federation of Meat and Food Traders (1 Belgrove, Tunbridge Wells, Kent TN1 1YN) is being distributed all around the country. It derives from the fact that the UK Government managed to get everyone to believe that there was little risk and so to ask why the ban was needed anyway. The funding for this is unclear.

Dutch investigate UK export fraud.

The dutch national police is investigating the role of the RVV ( goverment institute for controlling all kinds of lifestock and products ) in the brittish beef fraud. The department of agriculture said the research started 1 mouth ago and no statements will be made for the time being.

Lungs to be banned as food by EU.

The lungs of the mouse with scrapie are highly infectious with scrapie but few other experiments have been carried out to see how much infectivity was present in other species. The Consumer committee at the EC basically decided that the lungs should not have been presumed to be infectivity-free (as the MAFF had done) but rather to assume them to be infected: and action taken in cattle, sheep and goats. The press does not seem to have realised this yet.

It appears that Jack Cunningham's son went to the same school as one of the people that have died of nvCJD.

Maybe that could explain a bit better why he has a much better understanding.

CJD (corneas) inquiry headed by William Stuart.

All very difficult to work out why it took so long for the tests to take place and why it took place at all. The worry is that Stuart was previously closely involved as the Science Advisor (to the cabinet) early in the Tory Government.

Dispatches to be a major crush for former Government.

The TV program due to come out in 4 days time (11.12.97, Channel 4) apparently has evidence that the MAFF went out of its way to prevent important information reaching either the press, the population or the politicians. i.e. this was Whitehall making sure that they could manipulate the politicians as much as possible. I am told that the program is utterly damming and will come out at a time that the Government is planning which type of inquiry to plan for BSE.

Narang demonstrates action of rapid urine test for TSE.

Apparently this was done by an independent group and so the former claims about the credibility of Dr. Narang's tests must be questioned. Exactly what was found out is not clear: all that has come out from a Government meeting is that the test seemed to work and that further research was going to go ahead. No details of the experiments are currently available but if the test did work it would be surprising if it was not chased by every pharmaceutical company.

Questions in the House of Commons.

It seems that there is to be a flurry of questions about the safey of blood products going through fairly soon and the results can do nothing but show that the government was aware that risks were present since mid 1996 and little has been done about it.

James Erlichman, the major reporter that got the information to the press about BSE early in the epidemic is to be put forward as a hero in the newspapers.

This all seems a bit rich after he actually had difficulty getting the papers to take on the articles early in the disease.

Lacey's biography is on the way.

It seems that Prof. Lacey who was one of the first to stand up and say that the risk from BSE was unacceptably high and is quite a character is now being interviewed for a full blown biography for public sale.

International withdrawal of blood products that have an increased risk of CJD

On November 25, the Central Laboratory Blood Transfusion Service Swiss Red Cross, Bern, Switzerland withdrew from the market two lots of immune globulin intravenous (human) Sandoglobulin and one lot of Albumin (human). The Central Laboratory was notified that the source material used in the production of Sandoglobulin and Albumin lots contained product derived from a donor who might have received Human Pituitary Derived Growth Hormone in 1969, putting the donor at increased risk for Creutzfeldt-Jakob disease. The immune globulin was distributed in the US by Novartis Pharmaceutical Corp. of East Hanover, NJ; the albumin was distributed by Baxter Healthcare Corp. (Source: Center for Biologics Evaluation and Research Internet site, 11/26/97). The recent report that blood products from humans incubating nvCJD were sent to 46 countries has been a shock but it seems that all of these are either going to be withdrawn or the recipients followed up.

There appears to be information appearing suggesting that quite a large change will have to take place in the supply of beef in the UK (soon).

The reason for this is not clear yet but may have something to do with nerves/bone marrow/blood that may have been found to be infective. 3.12.97

Worry is appearing about transplantation.

The media in the UK seem to have realised that nvCJD, if it can be in blood products may well be in other transplanted products too. Also, the donors of them tend to be relatively young and hence may be infected with nvCJD. This is clearly not going to stop until the Department of Health makes its statistics clear and comes out with an explanation of its position.

European Commission tells pharmaceutical companies not to use any bovine product.

This appears to include gelatin and tallow, which the UK Government have declared as being safe. This is not completely true in that SEAC have looked into the use of tallow in cosmetics.

November 1997

Austria refuses to take any UK plasma due to nvCJD risks.

Octapharma was going to export UK plasma for it to be processed to remove hepatitis C. The Austrian Government refused to permit it due to potential contamination of the plasma plant with nvCJD.

BANNING OF UK GAMMA GLOBULINS.

Gossip is flying around at the moment indicating that the UK Government is to ban their use soon in the UK. This should apply to possibly other UK blood products as well and it is very likely that we will see this come out as a single announcement from the UK Government. The idea seems to be that we might as well ban them ourselves before other countries do it before us. This data has come from the media and may not be valid.

Vicki Rimmer has died today (21.11.97)

This was the first person to have nvCJD and she has died eventually of a pneumonia. The diasnosis has been challenged due to the length of the illness but it seems likely to be true. James Ironside is carrying out the post mortem at this moment.

SEAC meeting on 2.12.97 looks as if it will be a bumpy ride.

The data concerning blood transfusion, blood products and risk analyses may well be on the way and decisions will have to be made on them.

'Dispatches' the hard hitting TV program describing the incompitence of the Tory handling of BSE may well be shown in early December.

We simply dont know the exact date yet but various people have been interviewed and this will look extremely black for the former Government.

An ethics committee has decided that people that have received the blood of nvCJD patients will not be told.

Apparently the decision was made by the Midlothian Ethics Committee because Dr. Will asked for their permission to investigate the outcome of the transfusions or inoculations of many people as a prospective study. The Committee somehow decided that as the risk was so slight from actualy developing nvCJD it would be a greater harm that the people were told that they had received the products. It is not clear how they decided that the risk was slight, however, as nvCJD is a human TSE and so very small amounts of infectivity are needed to transmit the disease and also the experiment itself was to find out what the risk actually was (i.e. we do not know that the risk is slight). The major problem from this is that Midlothian ethics committee may have given the UK Government 'pemission' not to tell anyone of exposure to the disease in this form. Clearly these people should not be blood donors and so may have to be told that a risk is present.

Amersham International withdraws products that may contain nvCJD.

Blood products made from mixed plasma products that might contain nvCJD in the UK have been taken off the shelf. They were involving Zenalb 20, that was used in a scintillation device for brain scanning, and the Pulminate 2 agent. The withdrawal has indicated that industry is not prepared to wait to find out if the blood products are proven to transmit the disease and further products are likely to be withdrawn.

Possibility that a judicial inquiry into BSE may be stopped by higher politicians.

It is said (and currently there is no proof of this) that some parts of the cabinet do not want a judicial inquiry into BSE because of the long term cost to the Government. They have said that they will announce a full description of the inquiry that will be produced in about 3 weeks time (?first week in December).

James Ironside went to talk to the legal people involved with the nvCJD cases.

They were determined that he gives them some idea of the number of cases of nvCJD that they should expect. He simply said that at the current time there was not enough information with which to make any adequate prediction.

Meeting today (21.11.97) by the European Parliament Committee on BSE in Strasbourg.

They say that a no-fault compensation may be enforced by them concerning BSE damage to patients..but not for money to be given relatives. It looks as if the directive may go to the UK to have an inquiry.

No acknowlegements have been sent to the complaints for demands for inquiry to Department of Health.

Don Hefferon, the father of a man that died of CJD due to hGH and in the process of taking the Government to Court wrote demanding that the inquiry goes ahead. Four weeks later there has been no result. Cambridge 01223 311526

Export of all UK blood products may be banned by EU.

This is now being discussed by the EU (exactly who is doing it I am not sure) and is a bit pointless as UK exports minimal amounts anyway. The worry that is coming from the UK is the treating of the UK blood (and blood donors) a bit like UK beef.

Leucodepletion as an answer to blood transfusion problems.

Behind the scenes the various haematologists are unhappy that both the cost and the need to carry this out soon after transfusion can be done in the UK adequately. This looks as if there will be a crash in the use of blood in the UK and more problems may arrive as a result.

Haematologists in the UK are ready to stop all UK gamma globulin.

It seems that the major producer of i.v. preparations in Europe is Sandoz and they control 60% of the UK market anyway. As a result the importation of the product may now apply to the whole market soon.

Haemophilia Society in UK meeting to discuss the use of UK factor 8.

They are now aware that the risk has been taken concerning this and the use of human blood for its manufacture. It looks as if demands for its stopping have already started.

SEAC meets on 11.11.97: blood transfusion in the UK may be changed dramatically.

The word going around is that SEAC have made it clear to the Department of Health in the UK that they cannot guarantee the safety of UK blood or blood products. The withdrawal of large amounts of UK blood products may start very rapidly and the stopping of the use of gamma globulin for the prophylaxis against hepatitis A.

Narang's claim for test of urine.

This is the one that is claimed to work and Narang seems to have started on pretty good statistics. The research was not done by Narang, but by a researcher doing the tests in a blind fasion. Narang is excited by this and has made sure that it will be able to get around his critics. (No doubt he will have patented it). He thinks that a lot of the information about the test may actually be in the hands of MAFF already.

Death on the Menu. CJD victims: Diagnosis and Care. Families devastated by BSE reveal their tragic stories.

Harash Narang's latest book indicating what took place at family level and why things took so long to get through. For a copy HH Publisher. Address: 40 Brentwood Ave, Newcastle upon Tyne NE2 3DH. 0191 281 5311. Fax 0191 281 0611. ISBN 097 809 53 07 6413. Price 19.95 pounds. 320 pages, hardback, plenty of photographs unavailable otherwise. Forward by Edwina Currie (former MP). This is really quite an oportunity to get an insight into the problem as seen from the family side. (Narang has put a lot of time into this and has been involved with the relatives much more than other groups. The findings suggest that BSE should have been recognised earlier than 1996 in humans).

New incinerator in Suffolk is unaccepted by locals.

The developer, Bronzeoak Ltd, is proposing to build an incinerator at Worlingham, near Beccles, Suffolk. The local authority is Waveney District Council. 'Time is marching on, and although the residents were cheered earlier in the year by the news that the developers application had been declined, an appeal has been lodged and now they only have a few days to lodge an effective response'. Contact: Alan Mills 20 Ash Tree Close, Worlingham, Beccles, Suffolk

First case of BSE in Belgium.

It seems that there is no connection between this case and the UK. This is really fairly disastrous for the Belgian Government, that has been saying that Belgian beef is certainly safe.

The inner circle??

Various groups have found it impossible to come to the meeting in France on the 16-20th of November. 'full up' is the reason that has been given but this is not at all clear and worry is appearing that certain researchers are simply not wanted.

Still no response from UK Government about having an inquiry.

It is said that this is purely because of the potential costs.

Report of piece of DNA that is associated with scrapie infectivity.

One report under the table indicates that a piece of DNA has been transfected into a host and the animal has then developed TSE. This would completely blow away the prion theory and so we must wait for the full details.

New book by Harash Narang.

This seems to be an interesting version in which he has interviewed the relatives of a large number of cases of CJD and nvCJD and tried to separate the two groups by many factors. This seems an interesting book and it can be seen that it has taken a lot of work to produce. More details later when it is available.

Environmental Agency certain of the safety of incineration.

It seems that they are quite determined that the hopeful calculations carried out represent a good indication of the risks involved with incineration. They are quite aware that the incinerated particles may not reach the right temperature and only do that for around 2 seconds but they are happy that the destruction is adequate. The MBM storage is probably getting too difficult for them to allow it to build up more.

Evidence (poor currently) of animal incineration being associated geographically with the cases of nvCJD.

It seems that a study has been carried out to see if the areas where the incineration takes place are also the areas where the cases appear...and it is found that they are in some way similar. Poor statistics can be put in on this currently but this type of assessment will continue.

Deep mining to get rid of MBM?

It seems that Worldrill's technique for drilling deep holes and incinerating carcasses underground may not be completely dotty but apparently the Government offices that are meant to have looked at it are not playing the game. It is really quite complex to work out how to get information into Government offices without it being shifted from one desk to another and it looks as if Worldrill's been having that problem. It looks as if the underground incinerators were originally built in the USA (and patented) to get rid of toxic chemicals. Unfortunately the incinerator cost 650 million dollars.