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Assessing websites on complementary and alternative medicine for cancer

anticancerinfo.co.uk critique of an article published in a medical journal, which was widely reported in the press in August 2004.

The article entitled "Assessing websites on complementary and alternative medicine for cancer" by K Schmidt & E. Ernst was a study of websites from December 2002 to January 2003, but not published until 2004. (The article itself is obtainable from Katja.Schmidt@pms.ac.uk).

Proportion of cancer patients using the internet

The article starts by looking at studies on the proportion of cancer patients who use the internet for information. It cites one US study (16% of 139 lung cancer patients used the internet) - the reference is a report in 2003. Another study was in Canada (43% of 107 breast cancer patients) - the reference is a report in 2000, so the study is likely to be 1999 at the latest. In the US (reference in 2002) 41.5% of breast cancer women reported using the internet for information. Lastly an Australian study (less than 7% of 266 breast cancer patients used the internet) - the report referenced was in 2002, but the study was stated in the article to have been carried out in 1999. The article then referred, presumably, to the Australian study "This very low percentage compared to other, more recent surveys highlights the dramatic increase of Internet use during recent years" (referenced to a report in 2003). Commonsense says this would be the case, but this article has not demonstrated this at all. What and where are the 'more recent studies'? To demonstrate the increase scientifically, surely the studies would have to be undertaken in the same country - perhaps even with similar age group/type and severity of cancer - to make the point.

Using US and Canadian studies to extrapolate to the UK is misleading

It would have been interesting if original research could have been carried out on the proportion of UK cancer patients searching for information on the internet. No studies were cited on the UK. Reference to the US and Canada are misleading because of the different nature of the health industry. Traditionally the NHS in the UK tends to discourage ownership of one's health problems and solutions, and encourage reliance on the GPs and specialists. Seeking 'second opinions' is not the norm. In the US and Canada however, the system operates differently, with everyone obliged to take out health insurance. In this case, each individual decides (within the limits of his/her insurance) who to go to for health solutions. So it is understandable that Americans and Canadians would be searching the internet to weigh up the options.

"At least one fatality" indicated

The article states "Many cancer patients desperately seek knowledge about their condition and thus can be very vulnerable to misleading information". However, if orthodox treatment worked, then cancer patients would not be desperately seeking elsewhere. "CAM (complementary and alternative medicines) products can easily be purchased on the Internet without prescription. This has previously led to at least one known fatality of a cancer patient." It would be logical if similar standards regarding fatalities should be demanded of orthodox therapies. A recent independent report (August 2004) indicated that one in ten patients admitted to NHS hospitals will fall victim to medical errors, which have now become Britain's fourth-biggest killer. Medical accidents and errors contribute to the deaths of 72,000 people a year, and they are directly blamed for 40,000. These figures do not even include errors occurring in primary care, such as in GP's surgeries, and are likely to be significantly less that the actual rate as they are only based on reported errors. Research around the world has indicated that most hospitals have an error rate of 10%, and that about half these incidents could have been prevented. (Reported in 'The Times' 13.8.04)

Aim of the study

This article presented a study which had two aims: to assess the quality of popular websites on CAM for cancer, and secondly to identify the most popular forms of CAM currently discussed via the internet. The study searched for websites on the eight popular search engines using the search words 'complementary', 'alternative medicine' and 'cancer'. Having narrowed down the number of most popular websites they proceeded with series of questions on each. At no point has research been undertaken which specifically relates to the UK. The only limitation was that the websites should be in English.

Criteria of the study

  1. Sandvik score (i.e. is information provided on: ownership and authorship, references, able to contact the author, dated, navigability, balanced information). They used a set of scores to evaluate the quality of the website on the above eight criteria. All 32 websites scored medium to excellent on the Sandvik score.
  2. Did it have the HON code of approval? (Only two did) What or who this was, was not explained in the article. On investigation it seems it is a Swiss based organisation with a large committee including medical professions, academics, WHO officials and others. But none were indicated who had any expertise in 'alternative' therapies. So this criteria seemed irrelevant to the websites being researched in this study.
  3. Ability to harm? On four criteria (does the site discourage use of conventional medicine, or adhering to clinician's advice; does it provide opinions and experiences or factual details; and lastly does it provide commercial details?) Only one site scored 4 (the highest risk), two scored 3, six scored 2, twenty scored 1 and three scored 0. The article admitted this was "somewhat reassuring".
  4. Type of CAM advocated, distinguishing between curative (118), preventative (88) and palliative (59).

General discussion of results

The article says that "The results of our survey are somewhat reassuring as they suggest that the majority of the evaluated websites provide valuable and reliable information. This was the case, especially for the prevention of cancer." (We wonder if there were scientific trials to support the authors' opinions? - none were mentioned.) However, they go on to say "Generally speaking, the 'cancer cures' discussed on these websites are not supported by good scientific evidence".

It is a generally known fact that clinical trials cost many millions of pounds and that because natural remedies are not 'owned' by companies and therefore vast amounts of money are not being made from them, there are not the finances available to produce double blind clinical trials demanded by the scientific community. Indeed this particular way of working may be suitable for 'wonder drugs' but is not suitable for many natural therapies which work synergistically with each other. Indeed clinical trials can be questionable in their reliability. Many drugs have been approved and licensed after trials, only to be withdrawn later when problems appear in patients' actual health experience.1

The next comment in the article is "Other sites were downright dangerous as they advise patients against using conventional therapies." They quote some of the comments on the websites, but offer no argument to refute the observations, no evidence of the efficacy of conventional therapies. As can be seen elsewhere on anticancerinfo.co.uk, there is much statistical evidence that many conventional therapies do not work, and indeed can make matters worse. For an in depth view on orthodox and alternative treatments by independent cancer specialist Lothar Hirneise see www.krebstherapien.de. He has researched over 100 therapies in over 30 countries and founded Menschen gegen Krebs (People against cancer) in 1997, an independent organisation which publishes information, holds workshops and offers advice by telephone or email mgk@krebstherapien.de. The website is mainly in German so would not have been covered in this study. There is an article in English which is worth reading before starting any treatment. Now reproduced on this website Chemotherapy cures cancer - and the earth is flat.

'How Scientific are Orthodox Cancer Treatments?'.

This is the title of an article by Walter Last, which can be accessed on www.campaignfortruth.com/Eclub (click on July 22nd 2004). First published in Nexus, Volume 11, Number 4, June-July 2004. This is well documented, citing various studies on breast cancer, on chemotherapy used for various types of cancer, giving the scientific basis for drug approval. Worth reading before proceeding with orthodox treatment and attempting to assess the risk factor for conventional medicine or treatment. Another interesting article on the same website (click on February 23rd 2004) is entitled 'Chemo (Toxico) Therapy'.

The study looks in detail at the top five suggestions in each category (curative, preventative and palliative)

We looked at the authors' comments on laetrile. These are misleading. They state that it contains the toxic compound amygdalin. However, amygdalin's non-toxicity has been a well-known, fully accepted and non-controversial fact for over one hundred years. Otto Jacobsen in his book 'Die Glucoside' in 1887 stated "Amygdalin is not toxic" and gave 99 references from studies made within the 20 years prior to his publication. For over 100 years pharmacology reference books have described this substance as non-toxic. The only way hydrogen cyanide can be formed (it isn't present in amygdalin) is when amygdalin comes into contact with an enzyme beta-glucosidase which is found in cancer cells, but not in healthy cells. For a full description see Cancer prevention - a change in our diet (on www.anticancerinfo.co.uk). See further on the controversy about laetrile and cyanide in the book by Philip E. Binzel, Jr., M.D. Alive and Well (American Media, California 1994).

The study has also been very selective in saying "Clinical trials and animal studies have found no relevant benefit for cancer patients", using two references. However, there are plenty of trials that have shown the efficacy of laetrile killing off cancer cells. See Vitamin B17 Therapy - Does it work? which includes references. We wonder if the authors have actually researched for clinical trials, or have just quoted from previous inaccurate articles. The scientific community tend to quote each other to prove a point.2

We haven't followed up the article's comments on other alternative treatments. But all of the comments relate to there being no conclusive randomized controlled trials to prove that these cures work. See our comments above on trials.

Another flaw in this study is that it is unlikely that anyone is going to put in the parameters used in this study into the search engine. Patients would be likely to put their own type of cancer into the equation.

The authors suggest that websites should be monitored or given a seal of approval. This might be good if there were an alternative therapy accrediting organisation or a federation of such bodies, but to ask academics or orthodox professionals to adjudicate on a subject in which they have no training or expertise in administering, would defy logic and seem to be unethical.

After writing this critique I have come across two comments about 'scientific evidence':

  1. An article by Chris Woollams in the ICON magazine of September/October 2004 comments on an article in the BMJ by Professor Michael Baum slating the Gerson Therapy, Prince Charles for mentioning it, and any CAM that has not passed the rigorous tests of orthodox medicine. After questioning who is going to pay for these trials which everyone agrees are so needed, Woollams says "And the 'scientific evidence', of which there is none to support Gerson? Does a person walking around alive eight years after they were supposed to have passed on (like Michael Gearin-Tosh) count for nothing? No, it's anecdotal, you see. Baum calls it 'an urban myth'. Scientific proof is the clinical trial, which can use as few as 50 or so people taking a drug for just one year, showing some improvement over previous drugs, and then be prescribed for ever as 'proven scientifically'. (ICON published by CANCERactive)
  2. I came across an article in 'Proof' (a What Doctors Don't Tell You publication) in which the authors find it strange that Ernst, (the same author of the article on the study of CAM websites we are looking at) in a paper on Arnica, claims "there is little scientific evidence of its efficacy". In their reply McTaggert and Hubbard say "That's surprising, because Arnica has been well researched, and has been the subject of a number of proper scientific studies - indeed, Ernst himself quotes six as positive examples. So who says there is "little scientific evidence"? Why, it's a certain E. Ernst who said so in a paper published in 1998. So could it be the one and the same? Surely not - because to quote yourself to support your supposition is circular and, well, unscientific." (Proof February 2003, WDDDTY)
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