About ITP
Childhood ITP
Teenage ITP
Adult ITP
Medical Advisors
Research into ITP
Events
Convention
Seminar
Send for:-
Publications
American Perspective
Downloads
Leaflets and more....
Webwatch
July 2007
On a site entitled "The Healing Power of Placebos", http://www.fda.gov/fdac/features/2000/100_heal.html, there is a clear explanation of the placebo effect, published by the US Food and Drug Administration. (Sadly, this link has died since publication)
Is it possible that a website could promote a placebo effect? Can what you learn from this or other sites influence the course of your malady, whatever it is? The very fact that a placebo can have a beneficial effect is associated with your belief that it will have that effect, no matter that it contains only an inert substance. You take the placebo and you get better. If a website influences your belief, then "the drug" or "the treatment" will increase the effect of the placebo. So we must choose our websites with care.
How does a patient decide if a treatment is "the real thing". Sadly, common sense does not help here, for instance, if you were told that an effective headache remedy can be had from a plant extract from Salix alba (white willow), would you accept it? Would you take some to see if it worked? If it did work for you, how would you know if it was the placebo effect or not? The key of course is evidence. One of the extracts from Salix alba is Aspirin and the evidence that aspirin has a number of useful (and not so useful in the case of ITP) effects on the human is overwhelming. en.wikipedia.org/wiki/Aspirin.
So how about plant extracts in general, herbal products etc.? In this respect, some websites promote only quackery. A quick net search search for "Ayurvedic medicine" will yield a large list of vendors. As it says on the excellent Quackwatch website under "Ayurvedic Mumbo-Jumbo" at www.quackwatch.org (also linked from the Association's website), "In 2003, a survey of Ayurvedic herbal products manufactured in South Asia and sold in Boston-area stores found that 14 of 70 products (20%) contained concentrations of lead, mercury,…." and later "The authors also noted that ayurvedic theory attributes important therapeutic roles to mercury and lead". There is no clear repeatable double blind placebo based evidence to support their therapeutic claims, in fact, some of their products are clearly harmful.Would you give these products to your child who has ITP? Such sites foster belief so in some cases, when someone truly believes, some improvement may take place but it is only this belief fostered by quacks that make the gullible or desperate buy their products. Meanwhile, if you or your child have ingested lead or mercury, other unattractive processes will be taking place.
You may argue that alternative therapies works by TLC and the placebo effect. That may be true if the patient believes the product to be effective but would you take preparations known to contain lead or mercury, even if the practitioner was friendly and sympathetic to your predicament? Will the love and affection counteract the effects of mercury? If you think so, perhaps you should read of the events at Minamata Bay on www.bhopal.net/otherbhopals/archives/2006/04/50_years_later.html or pcwww.liv.ac.uk/aquabiol/mercury/minamata/minamatanotes_long.htm. This disaster was not caused by ingesting mercury in supposedly theraputic preparations, but does demonstrate what prologned exposure to small does of mercury can do.
In addition to ayurvedic medicine, some ITP websites promote, herbal remedies, "food as a cure", vitamins, supplements and homeopathy as effective treatments along with even less believable remedies. What they miss is that if any of these were shown to be effective in carefully controlled double blind placebo trials, they would become mainstream medicine, e.g. Aspirin. As has been explained several times by our medical advisors at the annual conventions, other treatments only exist on the fringe because they do not work. All of our advisors are delighted to use treatments shown to be effective.
See if you agree with the FAQ section of www.phytob.com, where it says "…viruses are electrical in nature - they interfere with the electrical field forces of the body. One of the most exciting aspects of vibrational medicine, such as the Phytobiophysics® Formulas, is their remarkable capacity to deal with viruses." This of course would be wonderful news to us all, it would mean the end of the HIV/AIDS epidemic, the common cold and a vast range of virus induced illness. Except of course, viruses are biological in nature, not "electrical", as is explained on http://micro.magnet.fsu.edu/cells/virus.html or http://biology.about.com/library/weekly/aa110200a.htm.
On http://www.nfsh.org.uk/content/view/29/38/ (link has died since publication) it says " Distant healing is healing performed when the patient is not present. It is possible to transmit healing energies over any distance and this form of healing can be very effective." and later " Every week, on various days or nights, groups of dedicated NFSH Healer Members join together for the purpose of sending Distant Healing. The groups exists to meet the needs of those people who are either unable to receive contact healing or who prefer to receive healing this way.". This is good news for all health practitioners, they can heal from the comfort of their homes! Without the need for travelling, think of the reduced carbon dioxide emissions. Hospitals will not be required and the drug companies can pack up and go home. I look forward to news reports of mass cures although I shall not hold my breath whilst waiting. If I do pass out from hypoxia from holding my breath, perhaps good readers, you will be able to cure me from afar!
An interesting "cure" is still promoted, even on sites purporting to help ITP sufferers, magnets. In 1841, a book was published under the wonderful title "Extraordinary Popular Delusions and the Madness of Crowds" by Charles Mackay. In this long and well researched book, Mackay thoroughly debunks the claims of the magnetisers even without the benefit of modern medical knowledge. The first sentence of chapter 7, The Magnetisers, it says " The wonderful influence of imagination in the cure of diseases is well known. A motion of the hand, or a glance of the eye, will throw a weak and credulous patient into a fit; and a pill made of bread, if taken with sufficient faith, will operate a cure better than all the drugs in the pharmacopœia.". This was written 166 years ago! As it is still in print you can buy the book but as it is long out of copyright, you can download it from a variety of sites. The easiest way to see these downloadable books is to use www.google.co.uk/books and search for the title. A related text is obtainable from the Gutenburg Project at www.gutenberg.org/etext/636. As an alternative, if you have a section of the text from almost any book such as "The wonderful influence of imagination", you can simply search for that in Google (with the quotes) to find a source.
If you believe in what The Times says, their piece at http://www.timesonline.co.uk/tol/life_and_style/health/article1945679.ece in interesting. A related site has a piece on pain and placebos, see http://www.wellcome.ac.uk/en/pain/microsite/medicine1.html.
The Guardian has a Bad Science page at http://www.guardian.co.uk/life/badscience/. One page here relevant to ITP is "Quackbuster causes too much flak for university" at http://www.guardian.co.uk/life/badscience/story/0,,2099020,00.html, where those who support Red Clover as a "blood cleanser" have managed to get an eminent Professor of Medicine to remove his quackbusting blog from the UCL servers. This is a great shame, a victory for blind belief against informed opinion based on verifiable evidence.
As they seem to be very effective, perhaps the ITP Support Association could get rich, making a cure-all for ITP? We could call it "Thrombobium" so giving it a scientific ring. If, as we hope, people trust what the Association publishes, that trust will reinforce the beneficial effect of Thrombobium. To strengthen the effect even further, we could follow the clever advertising of a famous brand of beer and be "reassuringly expensive". You will not of course find Thrombobium in anything we publish, instead you will find only evidence based information.
You could always take the advice on www.sugapil.com!
Happy surfing
Howard