Placebos: the Good, the Bad, and the Ugly
Placebos are extremely important aspect of essentially all health care. Usually when a physician uses the term 'placebo' it is considered derogatory, and maybe often that is the intention. From my perspective, placebo effect, both positive and negative, are powerful tools. Essentially when placebos have effect, it actually is a reflection that the mind is effecting the body function to heal itself (positive placebo) or make itself sicker (negative placebo). Let us begin the discussion with negative placebo.
I start with negative placebo because this is what radiologists deal with all the time on a daily basis. For the 30 + years I have been involved in Radiology this has been a daily thought subject, and has been a subject I have written on in some fashion for many years. Essentially if a patient is worried that a contrast agent will make them sick, there is an extremely good chance it will make them sick. The manifestation that preoccupies all radiologists is will it make the patient vomit. We generally describe 2 effects; the Lalli effect and the Weber effect - the negative placebo effects first described by the individuals whose names are attached to them, sometime in the 1970s early 1980s. The Weber effect refers to if heightened attention is paid to a new contrast agent put in use at a center there will be a greater rate of adverse events (read vomiting) for approximately 2 years following its introduction and then will settle down,. This reflects that everyone is nervous and is paying attention for the possibility of trouble. The Lalli effect more specifically refers to if the technologist is nervous about the contrast agent, and thereby makes the patient nervous, this increases adverse events. The appreciation of negative placebos has had an enormous impact on the practice of Radiology, and the type of contrast agents employed - largely not based on Science but on marketing and elicitation of Lalli and Weber effects in Radiology staff, by opposing company marketing teams.
Voodoo is an exotic form of negative placebo.
Positive placebos have been an integral part of medicine for millennia, up to the present day. In fact they likely represent the first forms of medicine. Positive placebos account for atleast 10-20% of the benefit of any medical or medical product treatment.
Positive placebos play therefore an important role with GDD, as there is a strong mental/psychological component to the disease, in a mind-body interaction. In GDD, patients by definition have near normal renal condition, so the kidneys continue to eliminate the offending particles, and additionally over time, provided no further GBCA has been given the host immune system will dampen its autoimmune type response. Assessing benefit from therapy therefore, these 3 factors have to be taken into consideration: positive placebo, continued renal elimination of Gd, and dampening of the host immune reaction.
By virtue of the challenging nature of GDD, and finding an effective comprehensive cure, I am supportive of using all forms of nutritional support, medical devices, and other devices. So I am on board with anti-oxidants, and other things, possibly saunas, possibly hyperbaric oxygen. The provisions being they should make sense, be not especially harmful, and should not cost alot.
The problem I have is that almost all of these alternative therapies are not shown to be effective in studies and most often because they have not been subjected to scientific inquiry. Why is that? It is because as I observed in an earlier blog a good study requires at least one hundred subjects in each arm of a study where one arm gets the entity and the other not, and the investigators are blinded to what is going on. This translates into atleast 1 million dollars to do, and at least 3 years to accrue to fruition. Simply put, few organizations/companies have that kind of time or money.. Then there is the real prospect after all that that no benefit is shown. If people are buying the supplements anyways -0 then why go to the risk and expense. Recognizing all of that, it makes perfect sense why many things are not proven - it is not necessarily because of nefarious intent.
So this gets back to my concept: if something makes sense, is not especially harmful, and doesn't cost a lot of money to treat something where no consistently effective treatment is available - why not try it? The kicker though is to be certain that it is not especially harmful - and this may be very difficult to show.