Critique of an article published in a medical journal, which was widely reported in the press in August 2004.
The article was entitled “Assessing
websites on complementary and alternative medicine for cancer” by K Schmidt
& E. Ernst
This 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 don’t 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.krebstherapie.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 wouldn’t
have been covered in this study. There
is an article in English which is worth reading before starting any treatment.
‘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)
August 2004
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