nvCJD - UK

[Guest guest]

Interesting and disturbing thoughts from Dr. Tom Pringle on the British

cover-up of information that would better indicate the future number of

nvCJD deaths.

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How much nvCJD is really known?

22 Mar 99 webmaster opinion

The surge in nvCJD at the end of 1998 was both baffling and instructive --

everyone interviewed was talking about

deaths from nvCJD, not the confirmed case load.

This means a patient under 35 with a clinical diagnosis of CJD, a positive

brain biopsy, anomalous EEG, plus a

positive tonsil test is not counted if still living. It is ridiculous to

wait for such a patient to die before being counted.

The population of England is so small that anyone under 35 with CJD could

safely be called nvCJD on age alone,

given that there would be 1-2 errors per decade.

The explosive but unwelcome14 Jan 1999 Lancet article from Collinge's group

described 9 cases of nvCJD among

20 tonsil tests. Looking once again at table 2, which I recommend strongly

to reporters, 5 were still alive, ages at

onset average 25.8. Clinical duration in the four that died was 17.9 months

(28, 26, 5.5). The five still living

averaged 14.6 months, with one greater than 24 months. [ Lancet full text

free to non-subscribers who register.]

It seems fair to say that 24 months typical duration of symptoms means

looking at nvCJD deaths as of March 1999

[given two month lag in reporting] is roughly looking at multiply confirmed

diagnoses of nvCJD as of Jan 1997.

The public and press are getting excited over some very stale data.

However, no question that there was a deliberate

subtext to the news: get ready for really worse news shortly.

Normally no one would use a strongly lagging indicator such as deaths when

public policy and research funding

decisions need an upper bound leading indicator and the best possible

current view of the scope of epidemic. What

public benefit is there in downplaying the known incidence?

They could easily go over their referral history and replot their data by

date of clinical onset. That would be a far

better predictor of the epidemic than this outdated analysis they give us

now. Yes, there would be some errors but

that is what error bars and statistians are for.

Note Labor/DoH/SEAC are very very careful not to disclose any data on

average clinical duration of the 39 deaths.

To disclose this simple data point is to disclose the official time-warp.

Vicky Rimer is said to have finally have

been confirmed to have had nvCJD. That case had a clinical duration of 5-6

years.

Further signs that England is going back to a non-disclosure policy that

served them so poorly during the BSE

years:

-- Surgically removed organs and highway accident caseshave been tested for

CJD but no results released.

--Hospital deaths have been tested for CJD but no results released

-- The CJD monitoring unit has applied for additional funding due to the

number of referrals but discloses little

about the percent running positive despite immense experience by now.

Going through my files, I came across this commentary in Nature dated 16

Jan 1997 by three of the same authors of

the latest Lancet piece. This latest clumsy cover-up reminds me of the

Three Stooges tripping over themselves on a

bank heist. Don't they realize reporters have access to Nature?

The sole figure in the 1997 paper gives graphically the date of onset, the

date of referral, the date of confirmed

diagnosis, and the date of death for each of the first 14 cases of nvCJD

[sorted by date of onset, not date of

confirmation]. Onset is nowhere defined but let us suppose it is clinical

signs. Cousens and supply an

advanced statistical modelling approach to the future.

Are we to believe that these authors never extended their graph from 14 to

39? Of course they update this figure for

their own records -- they just chose not include it in the Lancet article.

What a pity they didn't simply revise and

update their predictions based on a tripling of the data. Of course they

have done that -- they just chose not to release

it.

Had they provided the onset data but not the model, some reporter could

have run the model ( " resulting in a

proportional decrease or increase in the numbers of table 2 " pg 198). It

sounds like the real data must be far worse

than scenarios in the 1997 paper which had a worse case of 13,000 deaths.

To my best knowledge there has been an

absolute crack-down on releasing any more dates of onset since this article

appeared.

Times from onset to referral averaged 13.9 months: (26, 24, 21, 12, 17, 13,

10, 14, 8, 15, 7, 14, 6, 7)

....(7 cases had onset in 1994, 6 cases in 1995, 1 in 1996)

Times from referral to death averaged 3.5 months: (6, 2, 4, 2, 5, 4, 2, 3,

4, 1, 4)

Times from onset to death averaged 17.4 months [excluded a confirmed case

exceeding 34 months]

Three cases are clearly marked as confirmed prior to death.

Deaths from nvCJD

The Lancet 353, Number 9157 20 March 1999 [research letter]

R G Will, S N Cousens , C P Farrington, P G , RS G Knight, J W

Ironside

Predicting the nvCJD epidemic in Humans

Nature 385 197-98 1997 [commentary of 16 Jan 1997]

Cousens SN, ...., Will RG, PG