David Tuller: Trial By Error: My Latest Letter to Archives of Disease in Childhood

dave30th said:
Wow, they're just investigating that now? I mean, many wars have been fought and lost since then. It's not like it was a secret in the '80s that that happened.
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Yes and in France Italy Ireland it was investigated in the 1990s. In the UK the establishment is known for digging in against scandals, the Hillsborough Inquiry also took an incredibly long campaign.
 
Thanks David. I do not understand what's going on with the BMJ. The facts are quite clear... if they want to humiliate themselves trying to make excuses for breaching their own guidelines in order to help Phil Parker market the Lightning Process, then they should hurry up and just do it. Stop wasting peoples time.

Sean said:
There really is something truly rotten at the core of the British establishment.
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How dare you speak of our Queen like that!
 
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dave30th said:
what's that about?
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It's about a wholesale cover up of patient harm and culture of denial of harm; it affected a local man, A BT engineer who lived across the fields to me at Rushmere.
His name was Mark Buckland.
I have the newspaper stuff archived somewhere.

https://www.standard.co.uk/news/fam...minated-blood-slam-health-chiefs-7191481.html

" Daily Maul"
9 Dec 2006 - Mr Buckland, a BT research engineer in Ipswich, had to be given 40 pints of ... anyone, one pint was contaminated with variant Creutzfeldt-Jakob disease, ... officials finally contacted them to break the news that he had vCJD.

He was "diagnosed" by local neurology consultant at Ipswich Hospital to probably have ME.
Mark followed all best practice as an ME patient for some time before experiencing a catastrophic and sudden deterioration leading to his death.
It turns out he had New Variate CJD.

The authorities knew from years back the risk he experienced (from his medical records), as he had had blood transfusions some years back.
It was contaminated.
That was concealed from him and his family.

His was a classic misdiagnosis by a consultant who did not do all the necessary tests and checks.
He was not looked after by our local ME consultant at all.
Not sure if he was ever referred that route.

Lessons to be learnt by NICE (and others) who discourage testing beyond the obvious for presentations of symptoms aligned with ME?........?

The family of a man killed by the human form of mad cow disease after being given infected blood yesterday slammed health chiefs who knew he was at risk but failed to tell him until he was dying.


When Mark Buckland started to become tired and weak, he was wrongly diagnosed with chronic fatigue syndrome because senior NHS officials decided to keep his exposure to variant CJD a secret.


But because his own GP was not told either, when Mr Buckland - ironically a vegetarian since his teens - began showing symptoms in 2003, he was misdiagnosed with ME.

The following year he was told about his exposure, but according to his family he was told it was a "one in 1,000" risk and not anything to worry about.

By this time, Mr Buckland had had to give up work and was dedicating himself to a website supporting work towards a cure for ME.


As he began to lose his memory, officials finally contacted them to break the news that he had vCJD. He died in a hospice four months later.

At an inquest into his death, the coroner said Mr Buckland deserved to have been told the truth sooner.

Of the other 65 transfusion patients exposed to contaminated blood, two others are known to have developed vCJD.

Many have died from unrelated causes, leaving 24 who have now been given the facts but face an uncertain future as it is thought some carriers may never develop symptoms.
Yesterday, writing in The Lancet, Professor John Collinge, who investigated Mr Buckland's death, concluded that contaminated blood was an "efficient" route by which vCJD can be spread. He believes 14,000 people could be carrying vCJD without knowing it, and his research means they could infect many thousands more through contaminated surgical instruments.


Mr Buckland's 62-year-old father Peter said: .....

"But because of their decision he spent a lot of fruitless years setting up a website and researching an illness he didn't have. It was a complete and utter waste of time."

A spokeswoman for the Department of Health said when Mark fell ill it was not known whether vCJD could be transferred through blood.

"We are finding out more information all the time about vCJD which we are then able to pass on to patients who may be at risk," she added.
 
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[/QUOTE]"We are finding out more information all the time about vCJD which we are then able to pass on to patients who may be at risk," she added.[/QUOTE]
Now here's a scary thing and aside.........


https://www.ncbi.nlm.nih.gov/pubmed/16303485
The risk of transmission of variant Creutzfeldt-Jakob disease via contact lenses and ophthalmic devices.
Macalister GO1, Buckley RJ.
Author information
Abstract
This review collated the available information regarding the risk of transmission of variant Creutzfeldt-Jakob disease (vCJD) via contact lenses and other ophthalmic devices. The topics examined include: the emerging background science of the unconventional infective agent, the prion, particularly those factors affecting transmission; the estimates of the number of undiagnosed infective individuals; and evidence of infectivity in the external eye. Despite many uncertainties in the literature, we conclude that cross-infection is theoretically possible. An assessment of the extensive search for a complete inactivation procedure resulted in the recommendation of the use of sodium hypochlorite (NaOCl), which does not appear to distort rigid lenses. Further tests are required for other devices.
 
back to the LP.
One of the things that I find extraordinary is that I don't think there is anywhere in the research where it explains exactly what the LP is and how it is supposed to work, or how it is sold as a panacea for just about anything, or what qualifies the practitioners to administer it (other than completing a course thro PP inc).
If it were some magic potion, they would at least have to give some idea of the contents; wouldn't they(?) or is something that is a commercially available/sensitive exempt?
 
Sly Saint said:
back to the LP.
One of the things that I find extraordinary is that I don't think there is anywhere in the research where it explains exactly what the LP is and how it is supposed to work, or how it is sold as a panacea for just about anything, or what qualifies the practitioners to administer it (other than completing a course thro PP inc).
If it were some magic potion, they would at least have to give some idea of the contents; wouldn't they(?) or is something that is a commercially available/sensitive exempt?
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The Bristol SMILE press release promoted this 'explanation':

It is a three-day training programme run by registered practitioners and designed to teach individuals a new set of techniques for improving life and health, through consciously switching on health promoting neurological pathways.
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https://www.bristol.ac.uk/news/2017/september/lightning-process.html

So now we know. It switches on health promoting neurological pathways.
 
Sly Saint said:
back to the LP.
One of the things that I find extraordinary is that I don't think there is anywhere in the research where it explains exactly what the LP is and how it is supposed to work, or how it is sold as a panacea for just about anything, or what qualifies the practitioners to administer it (other than completing a course thro PP inc).
If it were some magic potion, they would at least have to give some idea of the contents; wouldn't they(?) or is something that is a commercially available/sensitive exempt?
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One of the consequences of this is that it anyone reading the paper cannot use knowledge of the treatment to assess the methodology. So they cannot assess how the treatment interacts with the data collection methodology. Or in other words they are not provided with the information that the LP tells people they will get better if they are positive and act as if they are and without this information they don't see how dodgy it is to use questionnaires as a measurement instrument. But perhaps an absence of knowledge should be treated as a worst case situation hence questionnaires should be treated as a bad measurement instrument unless evidence is given to contradict that.
 
Esther12 said:
So now we know. It switches on health promoting neurological pathways.
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If they can just get this into the public domain more via Big brother or Love Island it will be even more accepted.

TV programme psychologists would be the best medium to spread the truth on this.

Perhaps a representative from Bristol university could go on This Morning with Phil and Holly and have a nice cosy chat with an agony aunt and someone with a PHD who never sees patients but uses the tile of Doctor.

This will make it more true.
 
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