Dear Dr Hilary …………

This morning, ITV’s Daybreak ran a feature on the efforts of the parents of a five-year old girl who is suffering from a rare form of brain cancer, to raise money to pay for treatment at the Burzynski Clinic in Texas. Present in the studio, along with the presenters, were the girl, her father, and Daybreak’s Health Editor, Dr Hilary Jones. A YouTube clip of the interview is available here (poor sound quality unfortunately). In the interview, Dr Jones is asked for his opinion on the treatment. He describes it as ‘pioneering‘. He goes on to say that, “Pioneers in medicine tend to get a rough ride“. He also relates an anecdote about someone he knows who is currently at the Burzynski Clinic and is receiving ‘excellent treatment‘.

I am left wondering what messages this interview sends out to viewers, some of whom will know of cancer sufferers. My conclusions are:

  •  a treatment which is not available in the UK must be a treatment worth having.
  •  a treatment which is ‘pioneering’ and ‘experimental’ is a treatment worth having.
  •  a treatment which is not validated by the relevant medical authorities is a treatment worth having.
  •  a treatment which demands enormous personal and financial sacrifices is a treatment worth having.
  •  parents are entitled to try anything possible to find a cure for their children.

I believe none of these stand up to close scrutiny.

In my view Dr Jones has done a disservice to the sufferers of cancer and their friends and relatives. It isn’t surprising when parents have an emotional response to the situation they find themselves in. It isn’t surprising when the media use that emotional response to produce a piece which will grab the attention of viewers/readers.

I find it surprising that a doctor should do no more than amplify that response to the exclusion of all else. Readers of this and other blogs and followers of #Burzynski on Twitter will be well aware of the issues surrounding this ‘pioneering’ and ‘experimental’ treatment. If you need further information follow these links:

Quackometer – Dr Hilary Jones Promotes Questionable Burzynski Clinic on TV

Josephine Jones – Dear Evening Standard, it is immoral to promote the Burzynski Clinic

The 21st Floor – Burzynski: A Small Victory


8 thoughts on “Dear Dr Hilary …………”

  1. Hi

    I am nearing the end of my studies as a Clinical Nutritionist and i would like to kill this “Red Herring” of an arguement that “untested” means “will not work”.

    The British “N.I.C.E.” tests the saftey of drug products for use before general release on the public. This is a half truth, Tests are carried out in order to get a license, once the license is given the Medical Profession Monitors its side effects on the general public and so its the public that become the genuine genui-pigs for the drug industry, thats why drugs get taken off the market.

    Also many pateints would be happy to take a drug which has anecdotally shown to treat a disease even though it has not been “NICE” approved , as with some Cancer drugs. The fact they hadnt been tested prior to use as a particular therapy did not make the drug ineffective.

    The fact that many herbs and foods are effective in treating health issues has not meant that they dont work just because “NICE” have not carried out a test.

    Water is essential for life, just because “NICE” have not carried out an official test to prove it is essential for life, does not lessen that fact

    “NICE” only tests drugs it can patent and make money from. It will never test the Theraputic Value of water because it cannot make money from it.

    So lets not use the testing arguement and say

    “Because someone advocates an untested modality it is somehow dangerous or ineffective.

  2. I find it surprising, not to say worrying, that someone who is studying clinical nutrition is not aware of the role of NICE. NICE plays no part in patenting drugs. NICE does not test drugs. NICE uses evidence to evaluate the clinical effectiveness of drugs. Don’t you believe in evidence based medicine? (Anecdotes aren’t evidence). Not only have many ‘alternative’ modalities not been shown to work, many have been shown not to work.

    1. You question my understanding of the roles NICE plays, yet you can see below that NICE is involved in every step of the proccess.   NICE guidance Find guidance NICE Pathways Latest guidance Guidance by type Guidance in development How guidance is produced NICE guidance research recommendations Guidance for patients and public Other publications Patient safety solutions pilot Quality standards

      Guidance in development

      View guidance in development by clicking on the types below

      Clinical guidelines in developmentNICE clinical guidelines make recommendations to the NHS on treating and caring for people with specific diseases and conditions.

      Public health guidance in developmentNICE public health guidance makes recommendations to the NHS, local authorities and other organisations in the public, private, voluntary and community sectors on how to improve people’s health and prevent illness and disease.

      Technology appraisal guidance in developmentNICE technology appraisal guidance makes recommendations on when and how new and existing medicines and treatments should be used in the NHS.

      Interventional procedures guidance in developmentNICE interventional procedures guidance advises the NHS on whether new interventional procedures are safe and effective enough to be used routinely.

      Medical technologies guidance in developmentNICE medical technologies guidance helps the NHS to adopt medical technologies more rapidly and consistently by advising on efficacy and cost effectivness.

      Diagnostics guidance in developmentNICE diagnostics guidance makes recommendations to the NHS on the efficacy and cost effectiveness of new diagnostic technologies.   I think you will see that nothing is outside the scope and influence of NICE as you wish to otherwise promote. So They set the ground rules and oversee every step in every process right through to the final  taking of the drug to market. It is only when the drug is distributed to the public through the Medical Profession that “Anecdotal” evidence is gathered as to is real effectiveness and its side effects.      As regards evidenced based medicine, i can tell you as i already have done; that all our cellular activity and every hormonal response is controlled by our intake of micro and macro nutrients, Our negative feedback systems depend on elements taken from our food such as the iodine link to Free T4 and T3 production.  Our cellular interaction between Hydrophillic and hydrophobic activity is derived from foods. There is NOT one cell in your body that is manucatured from a drug. You decided not to comment on whether Scurvy was cured by food or by Drug based medicine.   If you want to see evidence based medicine at work which was also anecdotally rather than scientifically gathered is the example of Scurvy itself, is’nt it.   Many drugs are synthetic patents of plant based herbal medicines, in order to fund your lifestyle as NHS prostitutes.   i would really like to know why you have an aversion to Healing foods in favour of toxic drugs.   As i say, You cannot explain how we got to the 19th Century without your “Alternative” health care drug addicted system have you.   Thanks   Will

  3. It’s interesting that you use scurvy as an example. James Lind used a simple version of a RCT to show that citrus fruits could be used to treat scurvy. His evidence wasn’t anecdotal.

    1. You still cannot get away from the fact that eating whole foods containing not just ascorbic acid but all the complex elements including the antioxidants contained within the foods was responsible for restoring the  good health to the individual irrespective of anacdotal or evidence based tests.   When was the last time you read an evidence based report to understand the efficacy of a meal before sitting down to eat it to see if it would do you any good.   Can we agree Nucella that the sailors who came down with scurvy were not medicated by Big Pharma with vaccinations. That is the point.   Your arguments are fallacious insofar that I understand the medical deities have not done any evidence based test of the medicinal properties of water, or maybe they have?  The EU isuued a directive that appeared in the daily express friday Nov 18th 2011 with the headline “EU say’s Water is not Healthy”  Where are the evidence based tests that have produced such a claim. If It does exist it just goes to show how that holy cow of Tests tests and more tests is not as sound a piece of medical science that you think.   Although all the anecdotal evidence proves that water is every bit as much an essential nutrient as is Vitamin C. I suppose we are all waiting for the day when water is labelled a drug for its medicinal properties, then we will all have to get water injections and Big Pharma can continue making a mint!!     Why cant you just agree that Big Pharma and drug induced medicine is a reactive and not a proactive approach.   Over to you Nucella 

      1. Have you read the EFSA ruling or do you rely on the Daily Express for your information on science and medicine? The ruling was a well-intentioned but rather clumsy attempt at preventing the manufacturers of bottled water making unsubstantiated claims about their product. Water is a drink not a medicine and as you should know cannot be used to treat hypotonic or isotonic dehydration. Bottled water is a big industry and their interest is in selling their products. Why should they be allowed to employ scare tactics to achieve this?

        Who is this Big Pharma you keep referring to?

      2. Hi You are correct the Daily mail was hype, and not an evidenced based, – I mean where was the research that showed drinking bottled water was killing people – that is my point, The fact that so many people take their information from these rags is no doubt true, Just look at The NHS and how its nurses and doctors have taken the view that “Water is no good for you” evidenced by all the hospital deaths through Hypernatremia. Now i know you will defend the Medical profession to the death – no pun intended !! But they seem to have taken this view to heart. If the medical profession hadonly basic nutritional training they would have administered fluids to save lives – and i dont mean duretics like tea and coffee -. Where are the NHS dietitians – so much for them - Of course the EUdont want you to drink water, God forbid you drink something that is labelled pure when its got impurities in it, Better frighten people off from drinking the stuff – better still dont give them fluids at all !! Dont you agree Water would have saved the lives of these people, therefore its obviously medicinal.

        And why “BIG PHARMA” this is a label given to the mega bucks industry that controls and dictateseverything fromuniversity academic trackingto governments health policies. Thanks

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