PA research

Imagine a World Without Research: A Glimpse into Stagnation and Darkness

9 May, 2024

Katrina Burchell

I was on a Zoom meeting recently and when the topic of new research came up another participant, rather rudely and dismissively, asked “what is the point of research, why don’t we just get on and treat people with B12 deficiency by giving them all injections”.

Of course, I have some sympathy with the frustration people feel when they can’t get adequate treatment from ‘official channels’ but the irony behind this comment is that we wouldn’t even know where to start treating Pernicious Anaemia and B12 deficiency if research had not already taken place (see my earlier blog post entitled One History of Pernicious Anaemia). Nevertheless, the question prompted me to think about a ‘World Without Research’.

Perhaps I’m more sensitive to the subject of research since it is a foundation stone of the Pernicious Anaemia Society, something we pride ourselves on – asking questions like the top 10 uncertainties about PA which need answering (defined by the James Lind Alliance Priority Setting Partnership), and commissioning and funding important research, like the economic impact of PA which ultimately ended in our founder, Martyn Hooper, persuading NICE to set up a committee to draft the new guideline on B12 deficiency.

Imagine a world where diseases ran rampant with no hope of cure? This isn’t just a historical hypothetical, it’s a glimpse into a reality devoid of research, the engine of human progress. The development of life-saving inoculations like the polio and measles vaccines has drastically reduced disease burdens and saved millions of lives. Advancements in cancer research have led to more targeted therapies and improved survival rates for many cancer types. Public health research on the spread of HIV/AIDS has informed prevention strategies and contributed to a significant decline in new infections.

Health research holds immense value on numerous levels, impacting individuals, communities, and society as a whole.

Individual Benefits:

  • Improved Health Outcomes: Research leads to the discovery of new treatments, diagnostics, and preventive measures, ultimately enhancing the quality and lifespan of individuals. From vaccines preventing infectious diseases to targeted therapies for chronic conditions, research empowers individuals to manage their health more effectively. For those with Pernicious Anaemia, research leads to publications like this one in the BMJ aimed at helping primary care providers in the UK understand why the patient should be central to the treatment for this auto-immune condition. 
  • Personalised Medicine: Research paves the way for advancements in personalised medicine, tailoring treatments to individual genetic and biological profiles. This can lead to more effective and safer therapies with fewer side effects. Diabetes treatment for example has undergone a massive change in the last few years with new insulin options and drugs that work to slow digestion and remove excess sugar from the blood alongside continuous glucose monitoring systems and automatic insulin delivery systems. Every time I see someone wearing a glucose monitor or someone says they have a contraceptive implant I think why can’t there be a similar thing for those of us that need replacement vitamin B12 therapy so I could go about my life without the rollercoaster of waiting for, and getting appointments for intra-muscular B12 injections.
  • Enhanced Well-being: Research investigates mental health, nutrition, and lifestyle factors, offering insights into promoting overall well-being. This translates to improved mental health, a reduced risk of chronic diseases, and a better quality of life. Research supported by the Pernicious Anaemia Society clearly showed the impact on physical and mental health during Covid lockdowns when treatment was delayed or stopped completely.

Community and Societal Benefits:

  • Disease Prevention and Control: Research helps identify risk factors, develop effective public health interventions, and track disease outbreaks. This leads to better preparedness and control of infectious diseases, ultimately protecting communities from health threats. Dementia for example, is increasing globally, perhaps due to an aging population or better diagnosis, but we know that a lack of vitamin B12 can play a role in cognitive decline, so shouldn’t we be researching more into the potential links in this area? We know also that auto-immune conditions have a familial link and maybe a genetic link. We also know that everyone with PA needs an individualised frequency of treatment but there are so many questions still as to why this is and these questions need answering so we can predict better who needs what.
  • Reduced Healthcare Costs: By developing more effective treatments and preventive measures, research can significantly reduce healthcare costs associated with chronic diseases and other medical conditions. Research by the Pernicious Anaemia Society has shown significant misdiagnosis and delays in Pernicious Anaemia and many are left with an inadequate diagnosis due to the inaccuracy/sensitivity of the current tests. The cost of these failings in terms of wide-ranging blood tests, MRIs, CT scans, consultant referrals, many of them unnecessary with hindsight, and the impact on the economy of those patient’s lack of contribution to the workplace and society during this period of missed diagnosis is significant. Add to that the cost of wrong diagnoses and the prescription of costly pharmaceuticals like anti-depressants where they were not needed, it is easy to see why more research in this area could significantly contribute to reduced health care costs.
  • Economic Growth and Innovation: The healthcare industry and related fields experience considerable economic growth due to research advancements. This creates jobs, fosters innovation, and contributes to overall economic prosperity.
  • Ethical and Social Progress: Research helps address ethical dilemmas surrounding new technologies and medical practices, guiding informed decision-making and upholding social values.
So, whilst I honestly don’t think that the person who posed the question “what is the point of research?” truly believes that there should be no more research generally or into B12 specifically, let’s take a moment to reflect where we would be without research:

A Life Frozen in Time: Without research, our lives would be locked in a time capsule. The advancements that define our modern world – from smartphones to vaccines – wouldn’t exist. Imagine battling illnesses with medieval remedies, traveling by horse-drawn carriage, and communicating through handwritten letters. Life expectancy would plummet, basic needs would be a constant struggle, and innovation would be a forgotten dream.

A Feast of Unanswered Questions: The human spirit thrives on curiosity. Research fuels that fire, providing answers to life’s mysteries and pushing the boundaries of our understanding. Without it, the universe would remain an enigma, the origins of life a puzzle. We’d be left with blind faith instead of informed knowledge, stagnant in the face of endless possibilities.

A Shadow Over Progress: Research isn’t just about inventions and discoveries; it’s about progress. It tackles critical issues like climate change, poverty, and inequality, seeking solutions for a better future. Without it, these challenges would fester, unchecked and unresolved. We’d be left adrift in a sea of problems, with no compass to guide us towards a brighter tomorrow.

A Stifled Spirit of Innovation: Imagine a world where new ideas are met with suspicion and resistance. Without research to validate and refine them, innovation would be stifled. This wouldn’t just impact technology; it would stifle artistic expression, social progress, and any form of change. We’d be left with a stagnant society, resistant to anything outside the established norm.

But research isn’t only about grand inventions and distant futures. It’s about improving lives today. From personalised medicine developed to tailor treatments to the individual, to the research finding ways to improve agricultural yields and feed the world; research impacts us all, every single day.

Without research, we wouldn’t just be living in a less comfortable world; we’d be living in a world devoid of progress, knowledge, and hope. Research is the fuel that drives humanity forward, and without it, we’d be left stumbling in the dark. Without research patients with Pernicious Anaemia wouldn’t be alive today and without a future of research there is no hope that their lives will continue to improve in quality.

This thought experiment isn’t just a reminder of research’s importance; it’s a call to action.

Support the Pernicious Anaemia Society by becoming a member and/or donating because the research into B12 deficiency and Pernicious Anaemia pushes the boundaries of human knowledge.

Together, let’s ensure the light of research continues to illuminate our path towards a brighter future.

I am well aware that there are numerous support groups available on social media, many of them doing a sterling job helping people in their day-to-day journey through the minefield of diagnosis and treatment for B12 deficiency and Pernicious Anaemia. But none of these groups can provide accurate or helpful information without the foundation stone of research. The Pernicious Anaemia Society supports and actively takes part in CluB-12 whose aims are to :

  • Stimulate discussion on the uncertainties surrounding vitamin B12.
  • Promote and encourage research into all aspects of vitamin B12 metabolism.
  • Encourage multi-disciplinary conversations about vitamin B12.
  • Disseminate research findings to clinicians and the wider public.

And through this we can facilitate the sharing of knowledge between scientists and healthcare professionals.

Ultimately, the value of health research cannot be overstated. It paves the way for a healthier, safer, and more prosperous future for individuals and society. At a micro level this is true also for research into Pernicious Anaemia and B12 deficiency in general.

Here are some additional points to consider:

  • Research is an ongoing process, and its impact often unfolds over decades. Long-term investments in research are crucial for sustained progress.
  • Open access to research findings and collaboration between researchers are essential to maximize the benefits of research.
  • Ethical considerations and responsible conduct of research are paramount to ensure public trust and the benefits of research reach all segments of society.
What are your thoughts on the importance of research? Share your comments below!

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