Dementia cases will triple by 2050, why? but could we be seeing a human bse epidemic?

[Bodensee]

Chemmy, answer to your question, is None

JPG1 & jimbo111, I am glad to read that you both are grateful for the information I have posted

jenniferpa, of course it is important to recognize that when people speculate about possible causes of illness, that's all it is, but what I have quoted is factual and taken from reasearch currently underway in the UK to find a new drug for Alzheimers also I have quoted from a Guardian magazine published in 2001 which predicted an epidemic of human bse cases in the fututre, which is no different to what scientists are predicting with Alzheimer cases by 2050. My mothers mental health nurse actually told me recently that in his line of work he came across 2 middle aged patients who had vCJD and not dementia, this is not speculation. I am sure many families affected like myself want to know as much as possible about the illness, the cures, the research, not all of it is speculation.
I am sure Professor Sir John Collinge, director of the MRC Prion Unit at University College, London would welcome his findings on the Alzheimers website after all some members have never heard of him or his unit, and oneday he may even need volunteers for the new drug. This is a positive thing surely?

 

[Jancis]

I am sure Professor Sir John Collinge, director of the MRC Prion Unit at University College, London would welcome his findings on the Alzheimers website after all some members have never heard of him or his unit, and oneday he may even need volunteers for the new drug. This is a positive thing surely?

A very good point Bodensee. Thanks for taking the time to bring this important research to our attention.
Best wishes, Jancis

 

[Chemmy]

I am sure Professor Sir John Collinge, director of the MRC Prion Unit at University College, London would welcome his findings on the Alzheimers website

Well, if Professor Sir John Collinge BSc, MB, ChB, MD, FRCP, FRS , Head of Department, Department of Neurodegenerative Disease; director of the MRC Prion Unit at University College, London, (did I miss anything?) or one of his team would like to come and have a chat on the forum about his findings, I for one would be delighted. Although funnily enough I rather suspect the Alzheimers Society is following his research very closely and will report if and when any concrete results are forthcoming.

I think I'll wait for that. Good science is not eleven year old magazine articles, internet/media reports and hearsay.

Over and out.

 

[Bodensee]

Well, if Professor Sir John Collinge BSc, MB, ChB, MD, FRCP, FRS , Head of Department, Department of Neurodegenerative Disease; director of the MRC Prion Unit at University College, London, (did I miss anything?) or one of his team would like to come and have a chat on the forum about his findings, I for one would be delighted. Although funnily enough I rather suspect the Alzheimers Society is following his research very closely and will report if and when any concrete results are forthcoming.

I think I'll wait for that. Good science is not eleven year old magazine articles, internet/media reports and hearsay.

Over and out.

Chemmy, please dont get uptight, there is nothing wrong with raising awareness, you are probably right though I am sure the Alzheimers Society are aware of Collinge's research. The link to the prion clinic is only to provide people with information who have never heard about it before, you never know they may want volunteers at some stage. I shall be contacting them this week to ask about my mother's condition.

The Guardian magazine is as you say 11 years old, it is incredibly informative and valuable for anyone who has forgotten the dark days of the mad cow disease outbreak, if you or anyone would like a copy free of charge please pm.

 

[nicoise]

This is an area that I am interested in for a variety of personal reasons, and thus I follow any developments, and have followed your thread with interest.

Bodensee, in your research, have you come across anything that suggests that donated brains (given to whichever research facility is chosen) are tested for prion disease?

I ask purely because if brain tissue infected with prion disease of whatever variety is known to be highly infectious, that must surely be an issue for those either retrieving or working upon such tissues.

Thus surely any tissues, including those not diagnosed as having prion disease - such as those diagnosed with dementia/Alzheimers/Parkinsons/whatever - should be regarded with "suspicion" by those dealing with them? And therefore would be a valuable resource for such research, and provide another avenue for identifying prion disease that might have been misdiagnosed as one of the other neurodegenerative diseases?

Thanks in advance - I just don't have the time to keep up with all the research.

 

[Bodensee]

This is an area that I am interested in for a variety of personal reasons, and thus I follow any developments, and have followed your thread with interest.

Bodensee, in your research, have you come across anything that suggests that donated brains (given to whichever research facility is chosen) are tested for prion disease?

I ask purely because if brain tissue infected with prion disease of whatever variety is known to be highly infectious, that must surely be an issue for those either retrieving or working upon such tissues.

Thus surely any tissues, including those not diagnosed as having prion disease - such as those diagnosed with dementia/Alzheimers/Parkinsons/whatever - should be regarded with "suspicion" by those dealing with them? And therefore would be a valuable resource for such research, and provide another avenue for identifying prion disease that might have been misdiagnosed as one of the other neurodegenerative diseases?

Thanks in advance - I just don't have the time to keep up with all the research.

Hi Nicoise,
From what I understand the CJD Surveillance Unit in Edinburgh deals with samples of blood, tissue and organs and brains for testing from deceased and living persons, I have read that tonsils which are removed from patients are used to research for vCJD also spleens. I think this is how they can tell the prevelance of the disease within the population, and it is worrying from what I gather. That is why they use disposable surgical instruments for tonsil operations it is a highly infective area.
I would imagine those people working with brain tissue will be wearing protective clothing, but it is also possible to infected through blood as no one is actually screened to see if they are carriers. I absolutely agree with you about 'suspect' diseases such as alzheimers/dementia etc, people have been mis-diagnosed because the symptons displayed can be similar to vCJD. Other websites that are useful include SABTO who are the Safety Of Blood Tissue and Organs, they have regular meetings to discuss these issues and patient safety. The NHS provide patient leaflets advising on the risks of blood and plasma and transmissable diseases.
I have managed to locate an e-mail of the nurse co-ordinator at the prion unit, she deals with the blood taken from the victims to see if they have vCJD or not, she can answer our questions and send out leaflets, here it is (Moderator note: email address remove as per rule 3.3 of T & Cs - Please PM Bodensee if you require the email address)
Hope this helps.

 

[Bodensee]

nicoise, you might like to have a look at this research by a Canadian company ' Amorfix', they are developing a test for Alzheimer's Disease, I had no idea that the only definitive diagnostic for AD is post-mortem examination of brain tissue. This might answer your question about brain tissue and it also explains why it is so difficult for GP's/ consultants to give a 100% diagnosis of AD, very interesting here is the link:

http://amorfix.com/alzheimers_disease.php

 

[Nessa456]

I have a stong interest in this topic and have posted about it on this forum in the past:-

http://forum.alzheimers.org.uk/showthread.php?32198-Alzheimers-Symptoms&highlight=offal

I've read quite a bit about the discovery of prions and BSE/vCJD - it's a fascinating subject in it's own right

In my opinion the extent to which a person has eaten offal in the past may well have been a major factor in whether they have been exposed to vCJD, as it's in the offal parts of the cow/other animals that the prions are most likely to be concentrated.

There is also a theory that scrapie, which is another prion disease that occurs in sheep, and has been around for hundreds of years, could potentially have jumped the species barrier without us knowing and that diseases like Alzheimers could actually also be prion diseases themselves:-

http://journals.cambridge.org/downl...87a.pdf&code=8a127fe3ee497b52a467b20ce538f628

"Most important, using certain scrapie models it is possible to reproduce some of the characteristic pathological features of AD, particularly the occurrence of amyloid containing plaques and a selective loss of neurons in the hippocampus."

http://www.columbia.edu/cu/21stC/issue-2.1/debened.htm

"BSE is a neurodegenerative disease caused by a prion (a transmissible protein). BSE appears to be a form of scrapie, another prion-induced neurologic disease seen in sheep for centuries, which jumped from sheep to cows when British cattle farmers started using animal feed containing prion-infected sheep offal."

http://www.mad-cow.org/~tom/scrapie_human.html

The main way to test for vCJD is via a special brain scan but as you say, vCJD would have to be suspected in the first place and relatives/the person themself would need to seek out testing - most probably wouldn't do this either through lack of information or just plain fear!

Anyone with rapidly-progessing dementia or early onset dementia should probably be tested to rule out vCJD but in reality most people prefer not to know these things as it's too scary for them, which plays right into the government's agenda.

I've no doubt the government are only too happy for people to remain in the dark on this subject as they wouldn't want people to know if there really was an epidemic of cases and they wouldn't want to have to pay out on all the compensation claims - deaths from vCJD are reported in an exceedingly low key manner if at all but they're still regularly occurring - try googling it - they want it all swept under the carpet basically.

They also like to classify CJD deaths as sporadic CJD - sCJD ie 'unknown cause' rather than vCJD (human form of BSE) to keep the vCJD statistics lower than they really are.

It's a major cover-up basically and I'm not surprised they don't want this blood test known about or in general use as they're probably scared to death of the possible results!

 

[Jancis]

It's a major cover-up basically and I'm not surprised they don't want this blood test known about or in general use as they're probably scared to death of the possible results!

I wouldn't be at all surprised if you are correct in this assumption.

 

[jenniferpa]

It's a major cover-up basically and I'm not surprised they don't want this blood test known about or in general use as they're probably scared to death of the possible results!

I have to ask - do you have proof of this? I mean real, independent proof rather than internet speculation? It seems a bit "conspiracy theory" to me. Sorry if this sounds rude but it strikes me that it's pretty easy to make these accusations but not so easy to substantiate them.

 

[Nessa456]

I have to ask - do you have proof of this? I mean real, independent proof rather than internet speculation? It seems a bit "conspiracy theory" to me. Sorry if this sounds rude but it strikes me that it's pretty easy to make these accusations but not so easy to substantiate them.

What would consitute real proof? All the scientific studies that have been done? The internet blog of a mother who's son died of vCJD who's done loads of background research and interviews with people involved in the BSE crisis?

http://www.justice4andy.com/

It's easy to dismiss anything as a conspiracy theory but if there is nothing underhand going on why exactly has it been so hard to get this vCJD blood test on the market? You'd think the government/NHS would be glad of a test that gave a quick diagnosis to determine if a person did have vCJD - so why aren't they interested in it? Why has funding for a test been so hard to get?

You need to read between the lines and it's fairly obvious it's a subject the government would prefer people to dismiss
as irrelevant.

There have been 4 cases of people developing vCJD just from blood transfusions and there's no way of knowing how many people who've had it have donated blood either

http://www.hpa.org.uk/Topics/Infect...Z/CreutzfeldtJakobDisease/VariantCJDAndBlood/

"There have been four cases of variant-CJD infection associated with blood transfusion: three of the four recipients developed symptoms of vCJD. All four cases had received transfusions of non-leucodepleted red blood cells between 1996 and 1999.

The first case of vCJD disease associated with blood transfusion was identified in December 2003. This individual developed vCJD six and a half years after a transfusion of red cells. This was donated by an individual who developed symptoms of vCJD three and a half years after donation.

A case of vCJD 'infection' was identified a few months later in a recipient of red cells. The donor developed symptoms of vCJD 18 months after donation. This second case died from causes unrelated to vCJD five years after transfusion. Post-mortem investigations found abnormal prion protein in the spleen and a cervical lymph node, but not in the brain, and no pathological features of vCJD were found.

The third case developed symptoms of vCJD after 6 years and died 8 years and 8 months after receiving a transfusion of red blood cells. The donor developed vCJD about 20 months after this blood was donated.

The fourth case developed symptoms of vCJD 8.5 years after receiving a transfusion of red blood cells. The donor developed vCJD about 17 months after this blood was donated. The same donor donated the vCJD-implicated blood transfused to the 3rd and 4th cases.

On 16 March 2004 the Department of Health announced that people who had received a blood transfusion in the UK since 1980 would no longer be able to give blood. This change was implemented on 5 April 2004. Further information on measures to protect blood supply is available from the Department of Health and NHS Blood and Transplant."

This certainly isn't conspiracy theory - it's cold hard facts and I bet not many people on here knew about it.

 

[jenniferpa]

I guess we're going to have to disagree. While I don't doubt there have been many cases of BSE, I don't believe there has been a "major cover-up" and that's the point in your post I took issue with.

With all due respect, I feel that all you have produced here is anecdotal evidence and speculation. I personally don't find it compelling, but if you do that's fine. We're all adults here and can make up our own minds

 

[Bodensee]

I guess we're going to have to disagree. While I don't doubt there have been many cases of BSE, I don't believe there has been a "major cover-up" and that's the point in your post I took issue with.

With all due respect, I feel that all you have produced here is anecdotal evidence and speculation. I personally don't find it compelling, but if you do that's fine. We're all adults here and can make up our own minds

Jennifer have you seen the news today " Mad Cow Disease Found In California Dairy" its on our BBC news it's a huge story, 1 dairy cow has been found to have BSE, this so reminds me of the news back in 1985 when they first announced a farm in Sussex had a dairy cow with this new disease, then over a period of 11 years we were told that no way could this be transmitted to humans. So during that 11 years infected bovine material was used in the food and medicine chain, school dinners, vaccines, bovine serum was used in the manufacturer of insulin and polio vaccines. Beef tallow finds its way into creams, ointments and even toothpaste. Even by products as common place as the gelatine in pill coatings were derived from BSE infected cows. So this was over a period of 11 years and I remember this only to well. The first case of human bse was made public in 1997 the lady was just 17 years old and her name was Stacey Robinson, then many other deaths followed. Human BSE has a long incubation period upto 50 years in humans,this epidemic will therefore be spread over a 50 year period, so for instance if I was exposed in 1989(which I was) at the age of 30 then it is possible for me to incubate the disease with or without symptons until I am at least 80 years old which will be 2039.
Nessa isright about the transmission of vCJD through blood and it is correct that people have been infected from receiving donorblood.

This is why Professor Collinge is developing a blood test, I am very surprised that you have not read about this it is all on the prion clinic's website, also they are developing a drug for AD and from my understanding the symptons of vCJD/CJDare closely associated to those of dementia & AD.

Here are a couple of links from todays news you may like to read
http://www.bbc.co.uk/news/business-17821764


there is also a petition site running to ask our government to screen all blood for vCJD
http://www.thepetitionsite.com/1/screen-blood-for-vcjd/

 

[Bodensee]

One of the reasons why I am concerned about my mothers condition is because there are no conclusive tests for dementia symptons other than memory tests, the scan she had appears to have been a waste of time as other members on here have not even had scans for their dementia, my mother has a variety of symptons including the following: low moods, personality changes, loss of weight, sweet tooth, memory and concentration difficulties, communication problems, unable to smile or show fear.
She broke her wrist about a year ago and felt no pain whatsoever, the doctors were baffled, the x-rays showed a clear break, but mum did'nt want to wear the wrist support and carried on as though nothing had ever happened, she could'nt even remember the fall.
For all I know she could be have CJD/vCJD, AD, Dementia

 

[Chemmy]

why exactly has it been so hard to get this vCJD blood test on the market? You'd think the government/NHS would be glad of a test that gave a quick diagnosis to determine if a person did have vCJD - so why aren't they interested in it? Why has funding for a test been so hard to get?.

Because it's still work in progress.

Here's an example of the problems that arise if you jump the gun

In 2009, the Irish media was reporting that Amorfix was about to launch a blood test for vCJD..
Next year, after more research, the project is suspended


Actually I think it is highly insulting to suggest that research scientists of Collinge's calibre and his peers would cow to governmental pressures and collaborate in a cover up, which is, by implication, what you are suggesting. They'd be spilling the beans to The Times - or has it been silenced/bought off too?

Their research is ground-breaking and important, but it can't be rushed. It will be published when they're ready, and I'm sure the Alzheimer's Society will be one of the first to be informed.

Bodensee, whilst I understand your desire to have a definitive test for your mum, CJD/vCJD, AD, Dementia are, to date, all incurable. The doctors seem to have given your mum the best chance by prescribing Aricept just in case it's AD. Sorry to be blunt, but even if you did pin it down to one of the others, what actual difference would that make to your mum?

 

[nicoise]

Dear Bodensee,

Regarding the new case of a BSE cow found in a Californian dairy herd; unfortunately the US is still very much continuing its factory farming style of producing a large amount of food with the lowest cost. Dairy cows are being injected with growth hormones to increase milk production. I don't know the specifics of those growth hormones and the implications, but as always there is a price to be paid when the natural methods are interfered with.

And no, I'm not a paranoid conspiracy theorist, but be under no illusions that the damage caused financially by a health scare in cattle, poultry, whatever, is enormous to a nation's economy - so transparency can be questioned at times.

This is not meant to be alarmist - and I'm sure someone out there can put me straight if I've got it wrong! But it also highlights the fact that individually we must take responsibility in our own choices of lifestyle - where we are given the choice.

 

[Bodensee]

Because it's still work in progress.

Here's an example of the problems that arise if you jump the gun

In 2009, the Irish media was reporting that Amorfix was about to launch a blood test for vCJD..
Next year, after more research, the project is suspended


Actually I think it is highly insulting to suggest that research scientists of Collinge's calibre and his peers would cow to governmental pressures and collaborate in a cover up, which is, by implication, what you are suggesting. They'd be spilling the beans to The Times - or has it been silenced/bought off too?

Their research is ground-breaking and important, but it can't be rushed. It will be published when they're ready, and I'm sure the Alzheimer's Society will be one of the first to be informed.

Bodensee, whilst I understand your desire to have a definitive test for your mum, CJD/vCJD, AD, Dementia are, to date, all incurable. The doctors seem to have given your mum the best chance by prescribing Aricept just in case it's AD. Sorry to be blunt, but even if you did pin it down to one of the others, what actual difference would that make to your mum?

You make a good point Chemmy, ' What difference does it make to my mother whether she has any of these diseases', but you are forgetting one fundamental problem here and that is one of these diseases is 'transmissable, vCJD'.
If she does have this imagine the implications for those around her, imagine if she ever donated her blood, as another poster has said vCJD via blood/plasma transmission is a big problem for the DOH and to date you can still be infected through this route, it's on the blood bags, I think many haemophiliacs would confirm this to you.
A nurse once told me ' If they can test for vCJD, then they should be using it'

I would love to hear from any neurologists, scientists, nurses, doctors, carers what their thoughts and views are on what we have been discussing so far on this thread, the more we know the more hope we have of findings answers.

 

[Chemmy]

One of the first questions that the mental health team asked my mother was about her balance, which fortunately is okay so no worries there,

Your mum's too old to donate blood - we've already established that, so that's irrelevant.

I just don't understand why you seem to think your mum might have vCJD.

WHO factsheet

Clinical features
Early in the illness, patients usually experience psychiatric or sensory symptoms, which most commonly take the form of depression, apathy or anxiety, and occasionally (in a third of the cases) unusual persistent and painful sensory symptoms. Neurological signs, including unsteadiness, difficulty walking and involuntary movements, develop as the illness progresses and, by the time of death, patients become completely immobile and mute.

Doctors routinely diagnose by asking questions and then it's a process of elimination. If, as you say, your mum has no difficulty with her balance, and unsteadiness is a classic symptom of vCJD, why on earth would they then consider sending her for expensive tests, like an ECG 'just in case'?

As for the blood screening test, like I said, as far as I see, the research is still in the trial stage. But if the specialist is genuinely concerned that it might be vCJD, then it is possible to have testing done. But again, I don't see why this should be offered free on the NHS to anyone without reasonable grounds to believe that vCJD is the problem.

Maybe, like the rest of us, you just have to accept your mum has dementia and deal with the present rather than dwelling on the past or worrying about the future.

 

[Bodensee]

Chemmy, first of all I firmly believe that the Department of Health have a duty of care to protect everyone in this country from human bse (vCJD), at the moment they do not, one of my friends lost his son to vCJD through having a blood transfusion, another friend has had a blood transfusion and now cannot donate her blood or organs because of vCJD. She is now worried that oneday she may develop this lethal disease, she is right to be concerned is'nt she? Also there are many, many articles written about alzhiemers disease, dementia and links to vCJD, you must have read about this, you seem very knowledgable yourself, I am surprised you disagree with so much on here.
For your benefit I have asked my friend to give me a list of the symptons his son developed when he was eventually diagnosed with vCJD here they are:
memory problems
unable to concentrate
difficulty with gross, fine and skilled movement, balance is particularly affected
jerk movements
communication problems: unclear speech, word finding, reading & writing difficulties
visual problems
hallucinations
cortical blindness
eating and swallowing difficulties
numbness pain in limbs
heat sensitive/sensitive to touch/being held
cannot control saliva
personality/behavioural change/co-ordination
communication problems affecting speech comprehension
weight loss as metabolism is speeded up
anger/fear why is this happening to me?
visuoperceptual problems
unable to smile
unable to recognize family members of familiar situations
unable to remember anything a second or minute ago
all memories past and present wiped out
unable to talk
anxiety/panic attacks/feelings of dread fear
what's happening to me?


more severe symptons included:
deaf
blind
when tube fed the body becomes unable to process food/nutrients
quadriplegic, unable to move any part of the body, limbs first

 

[Bodensee]

Chemmy, here is a quote by Professor John Collinge himself & a colleague from the prion.ucl.ac.uk website it is proves the links between the diseases:

" Professor John Collinge , director of the MRC Prion Clinic at University College London, who led the study, says: With an ageing population and increasing numbers of families affected by Alzheimer's disease, there is an urgent need for new drugs which will help to preserve brain function and prevent memory loss, the sympton which most charcaterises the devastating impact of Alzheimer's. We're thrilled that this discovery shows in mice that these two antibodies, which we are developing to treat CJD, may also have a role in treating more common forms of dementia like Alzheimer's disease. If these antibody drugs prove to be safe in use to treat CJD we will consider whether studies in Alzheimer's disease should be carried out"

"Professor Dominic Walsh, co -corresponding author at University College Dublin, says:
A unique aspect of this study is that we used amyloid beta extracted from human brain, the same material we believe is causing MEMORY LOSS in patients with this devastating disease and we identified two antibodies that could block this effect. The use of these specific antibodies is particularly exciting since they have already undergone extensive pre-clinical testing for use in treating CJD. Thus a lot of basic work has already been done and could fast-track these antibodies for use in humans.
The next step is further vaildation in other disease models of Alzhiemer's and then safety trials in humans"


Chemmy, is'nt this wonderful news that they are very close to developing a drug which at first could help CJD sufferers and now people with Alzheimer's disease. It's all factual and gives so much hope to many people in this country, I will enquire when they plan to start the trials as I imagine they will need many candidates with AD such as my mother.