Alzheimer & Lewy Body dementia brains tested here at CJD surveillance unit

[Bodensee]

http://www.edinburghbrainbanks.ed.ac...thecjdbank.htm

I had no idea that donated brains of people who have died from Alzheimers & Lewy Body Dementia were sent to the National CJD Surveillance unit Brain & Tissue Bank in Edinburgh, the tissue is stored as frozen samples along with other samples of sporadic CJD, CJD, variant CJD, iatrogenic CJD, genetic prion disease (familial CJD, Gerstmann-Straussler-Syndrome (GSS) along with other neurological diseases.

Tissue samples date back to 1991 and have been authorised for retention from both hospital and medicolegal post mortem examinations.

Very interesting reading, I wonder why the CJD unit would be interested in AD & LBD brains?

[jenniferpa]

"I wonder why the CJD unit would be interested in AD & LBD brains? "

They state they have control samples. I imagine that is what these are: control samples and variants.

[nicoise]

I would also imagine it gives them the opportunity to test for CJD in the brains of those diagnosed with AD or LBD to perhaps pick up misdiagnosed conditions.

Which must also mean that the number of statistically noted confirmed cases of CJD does not only rely on those shown on a death certificate, but on other data sources such as post mortems, research etc.

This table for the number of CJD cases and referrals of suspected cases of CJD since 1990 from the National CJD Research & Surveillance Unit (NCJDRSU) in Edinburgh makes for interesting reading:

http://www.cjd.ed.ac.uk/figures.htm

[Bodensee]

"I wonder why the CJD unit would be interested in AD & LBD brains? "

They state they have control samples. I imagine that is what these are: control samples and variants.

who knows for sure Jennifer? but I thought the link between the National CJD Surveillance Team & AD/LBD brains is very interesting indeed, my friend told me that one of the questions on the questionnaire that this CJD surveillance team ask every family affected is this:

Have any members of your family have ever had dementia?

It does raise more questions however, for instance how many AD/LBD brains has this unit/team discovered with vCJD?
Are relatives informed of what is discovered?

I think this also highlights just how important and urgent the need is to have the new blood test developed by Prof.J.Collinge to detect vCJD in use in all our hospitals & GP surgeries in the UK, it makes sense, it would save lives. There would be no need for 'surveillance units'.
Who has access to the research samples?
Who changes the death certificate details?
Can our GP's and neurologists really be 100% definite that someone has AD/LBD?

[Bodensee]

I would also imagine it gives them the opportunity to test for CJD in the brains of those diagnosed with AD or LBD to perhaps pick up misdiagnosed conditions.

Which must also mean that the number of statistically noted confirmed cases of CJD does not only rely on those shown on a death certificate, but on other data sources such as post mortems, research etc.

This table for the number of CJD cases and referrals of suspected cases of CJD since 1990 from the National CJD Research & Surveillance Unit (NCJDRSU) in Edinburgh makes for interesting reading:

http://www.cjd.ed.ac.uk/figures.htm

There is no routine test done to look for CJD/vCJD at autposy, so if someone dies from say AD/LBD and they may have been mis-diagnosed their brain tissue will never be sent for reseach unless the relatives agree & authorise to have the brain used for research when that person dies.
So although the statistics shown on the graph you have linked appear very few, these figures are only based on the brain samples authorised by relatives. Can you see how this works, without brain tissue samples they cannot diagnose, how many people have died from AD/LBD and their brain tissue has never been tested, thousands if not millions of AD sufferers, the true figure for CJD/vCJD remains unknown because of this reason. Here is a simple example:

1000 people in the UK die from AD in 1 week
50 of those people had their brains authorised for research
5 of those brains were found to have vCJD and had been mis-diagnosed

total number of deaths recorded by research team from donated brains for AD/LBD disease is 45, and 5 for vCJD/CJD.

the remaining 950 people will never have been tested by this research team

But it is interesting that a CJD surveillance team has AD & LBD brain tissue in its brain banks and samples are available, these must have been donated in the first place, I have often wondered where they went for research, now we know.
I also thought that AD was not a 'prion disease' clearly it is.

[Bodensee]

"I wonder why the CJD unit would be interested in AD & LBD brains? "

They state they have control samples. I imagine that is what these are: control samples and variants.

jennifer,
this also highlights how urgent it is for our hospitals & GP's surgeries to implement the use of the new blood test developed by Prof.J.Collinge to detect vCJD in the UK population, it would saves lives, and we would not need to have a 'surveillance team', it makes complete sense to me.

[nicoise]

Dear Bodensee,

I do see how this works - because my mother donated her brain to Parkinson's Disease research. And yes, unless these donations are made, the brain material cannot be used to determine neurological diseases and perhaps confirm diagnoses. I am aware that in the USA there is quite a campaign for sufferers/families of AD to agree to donation.

She also had a probable diagnosis of Lewy Body Dementia (obviously only provable by post mortem, along with the other dementias), so I will be very pleased if some of her donated material is forwarded to Edinburgh (or however it works) and could be used to ascertain whether a prion disease - which of course might be any of the prion diseases or CJD, as it hasn't been proven as yet that they are one and the same thing and that all prion diseases are CJD - was present.

Under this donation arrangement, there is no notification to a relative of their findings unless specifically requested via the donor's GP. The findings report is sent to the GP, but is not necessarily passed onto relatives - I would assume there may be an element of data protection involved also here?

My mother's death certificate recorded that she died of Bronchopneumonia - which she did - but as a result of her pre-existing Parkinson's. So no dementia recorded for the official statistics. Which is a simple example of the official statistics not reflecting all information comprehensively.

My mother made that donation commitment some years before her death. Organising the retrieval by the Tissue Collection Team was handled very sensitively and efficiently with myself when I knew the time was coming; the retrieval was also handled very sensitively and discreetly, and afterwards one would never know anything had happened.

Selfishly I would like to know the findings - because there may be an element of inherited risk to myself. Or to possibly have the question answered as to whether the cause of my mother's problems could be attributed to environmental causes. Or whether it was just idiopathic. So I personally have to keep a sense of perspective about this or I could live in fear of developing this myself.

As to whether I will donate my brain, I'm not sure yet.

[JPG1]

Bodensee and others,

This is clearly an area of research that interests you, so here are a couple of articles that may also be of interest - although you may already have worked your way through them, in which case I apologise for posting them.

1. October 2000 - a Newsletter of the CJD Support Network - which originally started life as part of the Alzheimer's Society but I believe it is now totally independent of the Alzheimer's Society.

http://www.cjdsupport.net/UserFiles/...s/CJDOct00.pdf

2. A blog from 2011 - Some reflections on the vCJD blood test story -
http://simondenegri.com/2011/02/06/s...od-test-story/

with a link to:

3. Fergus Walsh's blog that came a few days earlier :
http://www.bbc.co.uk/blogs/thereport..._for_vcjd.html

4. A more recent piece - 9 May 2012 - by Dr Thomas Webb MD(Res), MBBS, MRCP(UK)
http://www.firstconsult.com/php/3345...b-disease.html

Just a few bits of interesting reading for anyone interested.

[nicoise]

Thanks JPG1 - that should keep me quiet for a while!

[Bodensee]

Thankyou JPG1 for the info and taking the trouble to look this up. One of the main reasons for talking about the links between AD and prion disease is that the UK population was exposed for at least 11 years to infected bse rogue prions between 1985-96 and as you probably know this incubates for many years and is transmissable from human to human, in fact many of us can be 'asymptomatic carriers' who never actually develop the disease but can pass it on through blood, tissues, organs.
When you consider that we are talking about potentially 58 million people all of whom are 'banned' from donating blood, tissue and organs overseas you can then begin to realise how serious a health issue this is.
When I first took my mother to the GP at no time did the GP ask if my mother had ever eaten beef between 85-96 or even lived in the UK during this period, the GP made no reference to vCJD at all even though my mother was suffering with memory issues, a sympton of vCJD, the GP did not ask if my mother had ever been a blood donor.
Now if my mother was living in say the USA now and had no memory problems she would not be allowed to donate her blood, tissue and organs, because she has been put at risk of vCJD from living in the UK between 85-96.

What every GP and neurologist should be asking every person who comes to see them with memory problems, anxiety, depression, balance problems is this:
Did you live in the UK between 1985 - 1996?
Have you ever been a blood donor?
They should be ruling out vCJD as a matter of course and alerting people to the fact that this is something they may have been exposed to several years ago.
Questions like this are asked overseas to UK citizens because of the concerns of vCJD, so why not in the UK, I would of thought it pretty obvious that GP's/Neurologists would be aware that 58 million of us have been exposed and symptons are similar to other diseases such AD & LBD.
The link I have put from the National CJD Surveillance Unit Brain & Tissue Bank highlights the fact that AD & LBD are suspect diseases when it comes to diagnosing vCJD.

[nicoise]

Dear Bodensee,

I understand your concerns and am not dismissive of them; but I also come at this from the angle that whilst you quote 58 million people as having been possibly exposed to vCJD, the official records to date since 1990 from Edinburgh are 122 neuropathologically confirmed deaths, from 2921 referrals of suspected CJD total in 22 years.

That is what I use to keep perspective - the odds are by my reckoning a tiny chance. I am not blinkered to the fact that the statistics are not 100% accurate.

I appreciate that you have personal experience via your friend of CJD - but that is very unusual.

I think it should continue to be monitored; that tight controls are kept re the food chain, chemicals, surgery and blood donation; that research should continue. And perhaps one method of testing could be this blood test - which I assume is only used when a person presents with the appropriate symptoms.

[Bodensee]

Hi nicoise,

I recommend you and all members on the forum buy these 2 books from Amazon:

Dying For A Hamburger:Modern Meat Processing And The Epidemic of Alzheimers - Authors- Murray Waldman & Majorie Lamb (ISBN-10 031234015X)

and

'BRAIN TRUST' The Hidden Connection Between Misdiagnosed Alzheimer's And Mad Cow Disease - Author- Colm.A.Kelleher (ISBN-10 0743499352)

also please read the readers reviews under this book, you will see that a neurologist has commented (Stephen Wong), part of what he says,
' As a trained neurologist working at a school of medicine, I thought I had a fairly good understanding of BSE and its human counterpart, nvCJD. But clinical knowledge is only one piece of the puzzle'
'Working in a complex medical system, it's all too familiar to me the fact that families do not pursue post-mortems'
'It is common dogma that sporadic CJD is not related to nvCJD or BSE, but that statement may be mistaken in light of more current research such as the type cited in the book, I hope that if awareness is promoted via reading this book, suspicion and surveillance for the disease among veterinarians and physicians will increase, and a more accurate picture of the situation will be revealed'


Two books on the connection between AD & MCD, perhaps we should all buy these and show them to our GP's/Neurologists, it may prompt them to re-think.

I thought you might also like to see why the official statistics for deaths from vCJD are inaccurate & watered down:

http://www.telegraph.co.uk/health/he...ed-to-BSE.html

and this one as Grant will never appear on the national statistics even though he died from mad cow disease:

http://www.bbc.co.uk/1/hi/health/8419459.stm

[Bodensee]

I think this story about Deryck Kenny sums up many problems associated with dementia mis-diagnosis, post-mortems, vCJD transmission via blood:

http://www.telegraph.co.uk/health/he...th-threat.html

Poor Deryck he was told by his neurologist that he had depression.
He was infected from having donor blood which was infected.(could be the donor was asymptomatic carrier)
Had his wife not requested an autopsy his death would probably have been attributed to 'early dementia'.
Coroners mis-diagnosed sCJD, when he had vCJD, this means his death certificate would have been inaccurate through mis-diagnosis, and as a result he will never appear on the official national statistics.

[nicoise]

Thank you Bodensee for your additional links, it all makes for interesting reading.

[Bodensee]

Could Deryck Kenny's example/experience be just the tip of the iceberg and we don't realise it?