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From: TSS (216-119-143-96.ipset23.wt.net)
Subject: Cautious go-ahead for vCJD treatment
Date: December 15, 2004 at 12:17 pm PST

-------- Original Message --------
Subject: Cautious go-ahead for vCJD treatment
Date: Wed, 15 Dec 2004 09:40:36 -0600
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy
To: BSE-L@LISTSERV.KALIV.UNI-KARLSRUHE.DE


##################### Bovine Spongiform Encephalopathy #####################

Cautious go-ahead for vCJD treatment

James Meikle, health correspondent
Wednesday December 15, 2004
The Guardian

Scientists are preparing to monitor the increasing number of patients
undergoing an unproven surgical treatment for the human form of BSE, but
will not include them in official trials without more evidence of its
potential and government approval.

The father of the first patient to receive pentosan polysulphate two
years ago believes that it has slowed or even stopped the disease's
progression, and it is understood similar treatment is now being given
to two other variant CJD patients.

But pentosan has to be pumped round the brain and requires neurosurgery.
There are uncertainties over dosage and how frequently it needs to be
given, despite what its supporters see as promising results from animal
trials.

The drug has blood-thinning properties, prompting concerns over brain
haemorrhages, and two group of government advisers have so far refused
to approve formal evaluation of the technique.

But scientists are anxious not to alienate families who have chosen the
radical and controversial treatment, and are offering them the chance to
speak to a neurologist who could collate information and systematically
monitor the effects of the drug.

Don Simms, whose son Jonathan has vCJD, won a legal battle to get
pentosan through the NHS. He said: "It is not a wonder drug. It is not a
cure. I am convinced we have slowed the disease down or we have stopped
it, one or the other."

Meanwhile nearly 30 patients have been enrolled on trials of a
tablet-based drug called quinacrine, formerly used to combat malaria and
sometimes still used against arthritis. These trials, overseen by the
Medical Research Council, started in the summer nearly three years after
the government asked the MRC to fasttrack research into what then
appeared to be the frontrunner in vCJD treatments.

That request followed the experience of Rachel Forber, a British vCJD
patient who went to the US to try quinacrine but subsequently died. The
government has now asked scientists to monitor pentosan patients, but
without sanctioning official trials.

John Collinge, head of the MRC's prion unit, said it was up to
individual families if they wanted to take up the offer: "I am very
sympathetic to families. I am trying to help them." But the trial had
been set up specifically for quinacrine, which had needed ethical
approval, peer review and monitoring by a committee with independent
members.

Not all scientists support the quinacrine trial but Professor Collinge
said it was far too early to say the drug would not work, despite the
difficulties in tracking progress across a range of diseases linked to
the abnormal form of the prion protein. "No treatment like this is going
to reverse damage," Prof Collinge said. "The most we can expect of these
first-generation drugs is they slow down or at best stop the damage to
the brain."

The quinacrine trial was expected to last three years and several dozen
patients were still needed to garner statistically reliable results from
what was thankfully a relatively rare group of diseases. "You cannot
just treat four patients and say it works or it doesn't work."

http://www.guardian.co.uk/uk_news/story/0,3604,1373806,00.html

> Meanwhile nearly 30 patients have been enrolled on trials of a
> tablet-based drug called quinacrine, formerly used to combat malaria
> and sometimes still used against arthritis. These trials, overseen by
> the Medical Research Council, started in the summer nearly three years
> after the government asked the MRC to fasttrack research into what
> then appeared to be the frontrunner in vCJD treatments.
>

Neurology -- Future Table of Contents Alert

A new future TOC for Neurology
has been made available for the issue:
28 December 2004; Vol. 63, No. 12

URL: http://www.neurology.org/future/63.12.shtml


snip...

Compassionate use of quinacrine in Creutzfeldt-Jakob disease fails to show
significant effects

S. Haik, J.P. Brandel, D. Salomon, V. Sazdovitch, N.
Delasnerie-Laupretre, J.L. Laplanche, B.A. Faucheux, C. Soubrie, E.
Boher, C. Belorgey, J.J. Hauw, and A. Alperovitch


Neurology 2004 63 (12): p. 2413

==============

Greetings,

WHY is it always ;


> Cautious go-ahead for vCJD treatment


WHY is it always that the sporadic and or other human
TSEs not mentioned as potential treatment?

DO they not care or does the treatment only work on
vCJD?

I do not understand this.

WHAT is the rational for only finding cure and or treatment for the vCJD victims and not all victims?

IF this is not the case then, why is it not termed ;

> Cautious go-ahead for Human TSE treatment

???

TSS

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