Why Do We Do Research?
Why do we do or support medical and health research?
What is the objective of spending large amounts of money, engaging some of the brightest minds in the country (or the world), and waiting for months or years for a result?
Here are some of the objectives I have read, heard or discussed:
· Research will find a cure;
· It will make our lives better;
· Research helps us understand the process of illness;
· This study will give greater insight into this industry;
· It’s for my Masters/PhD;
· I need to be published to maintain my status/tenure;
There is a great deal of excellent research being carried out that has the potential to increase our depth of knowledge about particular health challenges or health in general, therapeutic options, or is designed to support the introduction of recovery options for patients.
It is unfortunate that most of this excellent research is poorly funded, lacks support from major institutions or corporations, and the authors will struggle to find publication avenues.
Yet we see billions of dollars spent on major research initiatives that will not only gain publication in leading scientific journals, but will be “trickle fed” to us via main media and social media during the research process and if the outcome is considered even marginally successful.
What is the difference? Why are some very worthy research initiatives underfunded and ignored while others, not necessarily any better, or even as good, over funded and trumpeted around the world?
The likely outcomes are the answer.
When reading the desired or expected outcomes for many major research initiatives funded by organisations expert in extracting hard-earned cash from people diagnosed with distressing illnesses, or those who care deeply about them, we see that over 99% look for “new drug targets”, “ways to adapt old drugs for different disorders”, “trials of new drugs”, “isolating illness processes so that new drug targets can be identified”, or similar expectations.
These anticipated outcomes can really be summarised in one word – PROFIT.
Profit is not necessarily a dirty word but, when it is prioritised over the health and wellbeing of people challenged with very serious and debilitating disorders, it is of doubtful morality.
Of course, we have loud protestations from some enormous fund-raising-research-supporting organisations that their only objective is to “find a cure”. But, on examining the research funded, we see that more than 90% of those research projects, if successful, will result in huge profits for already mega-rich corporations. All research projects funded/supported by these organisations are firmly aimed at “finding a cure” or controlling symptoms until a “cure” is discovered. The concept of “cure” is clearly defined as drug or surgical interventions preventing manifestation of obvious symptoms.
This is not necessarily a bad thing – of course it is better to live with fewer symptoms – but we can’t “cure” a disease or person unless we remove or repair the causes of the illness symptoms. None of the major Parkinson’s research projects that I can find are aimed at that. The closest we see are investigations of ways to block misfolded alpha Synuclein (aS), or intervention at genetic level.
Misfolded aS and dysfunctional genes are SYMPTOMS not causes. We know the basic causes of neurological dysfunction (trauma, toxins, infection) and are finding better ways to identify causes in individual cases.
As noted at the beginning of this blog, there are some excellent research projects examining the roles of toxins, food choices and adverse childhood experiences in the progression towards illness, but where is the corporate funding or government grants to help extend and expand these projects? Where are the prestigious journals willing to publish the findings and support the researchers?
In my view, “cure” is a wishful concept that will never be attained. What we CAN achieve are better ways to help individuals reverse the illness process and become well. That is RECOVERY, not “cure”.
When writing “Rethinking Parkinson’s Disease”, I spent many hours pondering the need for ongoing research, research outcomes, and how best to find effective support for those of us diagnosed with Parkinson’s Disease or similar. Here is my vision.
We need:
VISION:
· to look beyond the selfishness and self-serving paradigm of cause-disease-cure to explore a broader concept of wellness creation becoming more powerful than disease creation and maintenance;
· to embrace all forms of medicine and wellness strategies as part of a cooperative and powerful move towards a healthier and happier society.
RESEARCH:
· analysing the benefits or harm of all food groups and preparation processes on our health through life;
· cell hydration, benefits and strategies;
· extensive analysis of the aetiological pathways explored here (in the book) and others that may become significant during aetiological pathway research;
· independent investigation of environmental toxins removed from the control or influence of the manufacturers and vested interest;
· lifestyle strategies for wellness and how best to construct education campaigns to encourage the general population to live well;
· practitioner/patient relationships that help or harm;
· much more.
LEADERSHIP:
· illness has people like Michael J Fox, Clyde Campbell and Liz Cantor who dedicate themselves to improving lives of those living with Parkinson’s disease and ongoing research. This leadership, altruistic and with the best of intentions, is based on the premise that Parkinson’s disease is a discrete and individual disease and that only Western Allopathic Medicine can find a “cure”;
· we need people of this stature to promote the concept of wellness and to help raise funds for the research above;
· without such leadership, we will struggle to move out of the dominance of “cure profitability” strategies.
INNOVATION:
· a new look at evidence. The “Gold Standard” for evidence promoted by Western Allopathic Medicine is a double-blind, randomised, placebo-controlled trial with a large population. However such trials are open to manipulation and abuse and, because of cost, are often short-term. Furthermore, many wellness strategies (e.g. dietary changes) do not lend themselves to such trials.
· we need a wide range of highly-qualified people from Western Allopathic Medicine and Complementary/Alternative Medicine to develop innovative research methods that will provide realistic and reproducible results;
· we need new ways to interpret past and current trials that do not necessarily prove what is claimed;
· we need innovative ways to reach people at risk of neurodegeneration in order to alleviate the burden of disease on them, their families and society;
· we need innovative use of social media and public broadcasters to foster an attitude of wellness as we age instead of an expectation of illness;
· new Centres of Excellence focusing on wellness strategies and self-help strategies in place of those teaching us how to “live with illness”.
DISCOURSE:
· open and respectful conversations between Western Allopathic Medicine and Complementary/Alternative Medicine practitioners and researchers exploring the contribution all forms of medicine and research can offer to People with Parkinson’s and those in the prodromal period;
· cessation of abuse and denigration of Complementary/Alternative Medicine practitioners and researchers by Western Allopathic Medicine and its pharmaceutical-sponsored “support” organisations;
· a public move by Western Allopathic Medicine to distance itself from rambunctious anti-health campaigners misquoting dubious studies to denigrate Complementary/Alternative Medicine healthcare practitioners;
· engagement of government agencies like the National Health and Medical Research Council in Australia, and similar bodies in other countries, with Complementary/Alternative Medicine practitioners and researchers as equal partners in the work to improve the health status of all people in our society;
· a change of language to promote and focus on lifestyle and self-help strategies to promote health throughout life rather than just treating illness or using drug therapy to prevent one illness with methods that may cause other illnesses.
FUNDING:
· of all medical/health research funding, less than one percent is spent on prevention research;
· that prevention research is largely dominated by Western Allopathic Medicine and so generally focuses on vaccine/drug prevention of single illnesses (often with unintended adverse effects) or outdated lifestyle/dietary strategies;
· we need funding for genuine and clinically supported lifestyle and dietary prevention strategies that is untied. Currently most funding is provided by non-pharmaceutical companies seeking to promote dietary supplement products, practitioners with particular interests or rare benefactors;
· national governments have a responsibility to enhance the health of their constituents (a responsibility most governments neglect in favour of illness treatment) and must allocate a much greater percentage of research funding to prevention research distant from vested interest, with guidance from Western Allopathic Medicine and Complementary/Alternative Medicine in equal measure;
· we urgently need Centres of Excellence focused on providing and teaching lifestyle and dietary strategies to enhance health and prevent disease. Currently all these centres are privately owned and funded by client contributions, which places access beyond all except those with a high degree of disposable income;
· all governments should allocate at least one percent of their health/illness budget each year to prevention research and education with equal voices from Western Allopathic Medicine and Complementary/Alternative Medicine. In Australia, this would mean, in 2019, 1.5 billion dollars spent on prevention strategies and research, ultimately yielding an ever-decreasing burden of health/illness care on the economy. I realise that this objective is in the realm of building fairy gardens to entertain politicians in their dotage and there is no political profit or benefit in preventing illness (it is really hard to publicise something that doesn’t happen). However, perhaps there are one or two altruistic politicians who will push for a much greater allocation of funds for illness preventing and life enhancement.
We CAN achieve some or all of these needs if we all focus on wellness and illness prevention, talk openly to our Western Allopathic Medicine and Complementary/Alternative Medicine practitioners, politicians and business leaders. One person is a whisper, a thousand people is a murmur, seventy thousand people (1% of those diagnosed with Parkinson’s disease) demands attention, one million people constitute a roar that will be heard around the world. It starts with you and me.
Will this ever happen in any country? This is doubtful. Those who could make it happen – politicians – are generally far more interested in electoral success or preserving their status in their party than the welfare of the citizens they purport to represent. But it is only by moving away from the established profit motive for medical research to a more altruistic aim of providing ways to becoming well that we will see any reduction in the misery of illness in Western society and any decrease in the financial burden of illness.
John Coleman, September 2022.