FitEyes was founded on the principle of empowering patients to take control of their eye health, even when that stance meant challenging the status quo. For example, advocating for self-tonometry was once met with resistance from the ophthalmology profession, yet it has become a cornerstone of what makes our community unique -- and this early pioneering work helped transform glaucoma management.
In that same spirit, I believe it is essential for our community to remain a safe haven for open-minded discussions about emerging treatments and unconventional approaches, even when these treatments lack extensive clinical trials.
When I started self-tonometry 20 years ago, there were no human clinical trials validating its benefits -- those would not come for years. Yet many of us took the chance on it because the potential reward of better understanding and managing our intraocular pressure (IOP) outweighed the uncertainty.
Similarly, discussions about emerging treatments should not be stifled by excessive caution because, for some members of our community, waiting for decades of data may mean losing not just their vision but also their hope.
1. The Importance of Hope
Emerging treatments offer more than just physical benefits -- they provide hope. For those facing blindness or other debilitating outcomes, hope can be a powerful motivator and even bring measurable real physical benefits, as demonstrated by the placebo effect.
- Psychological Impact: Knowing there are options -- even experimental or unproven ones -- can alleviate feelings of helplessness and despair.
- Community Support: Open discussions about new treatments foster solidarity within our group and remind us that we’re not alone in this journey.
Hope is not frivolous; it’s a lifeline. It can sustain mental health and encourage proactive engagement in managing one’s condition.
2. Individualized Risk-Benefit Decisions
Every patient’s situation is unique, and decisions about treatment should reflect personal needs, risk tolerance, and disease progression -- not a rigid adherence to the "party line" of the medical establishment.
Risk vs. Reward: For some patients, the potential benefits of an unproven treatment that might preserve vision outweigh the risks -- especially when facing blindness or significant vision loss. This becomes even more compelling when the treatment has roots in traditional medicine or historical usage (because the risk vs. reward ratio is altered by that fact).
Empowerment Through Choice: Patients must have autonomy to make informed decisions about their care. A one-size-fits-all wait-and-see approach may inadvertently deny someone the chance to preserve their quality of life.
FitEyes is one of the rare communities where thinking outside the box is encouraged. Other groups may shun discussions about unproven treatments, but we’ve always been different -- and we need to protect that core value.
Need I remind you that for more than 15 years after FitEyes.com was founded, most glaucoma patient communities refused to allow discussion of home tonometers? During that period, home tonometers saved multiple FitEyes members from losing their vision. Therefore, I can only wonder how many people outside of FitEyes and living with glaucoma lost their vision unnecessarily over those same years.
It's a mistake we do not need to repeat when exploring neuroprotective natural compounds, for example.
3. Ethical Imperatives in High-Stakes Conditions
The principles guiding medical care -- justice, autonomy, and beneficence -- support providing access to experimental therapies when standard treatments fail.
Compassionate Use Programs: These programs allow patients with severe conditions to access unapproved treatments under strict ethical guidelines. They reflect society’s commitment to offering hope where no other options exist.
Regulatory Flexibility: In cases of unmet medical needs, regulators often accept higher levels of uncertainty in risk-benefit assessments because they recognize that some conditions demand urgent action.
No Neuroprotective Treatment Available for Glaucoma: It is widely recognized that neuroprotective treatments need to be part of routine glaucoma management, yet there are no such treatments that have gone through the full process of clinical validation. While some FitEyes members may be content to do without a neuroprotective treatment program until such time that clinical validation is available, that’s not the smartest decision for others.
4. The Reality of Time in Clinical Validation
For many of us, time is not on our side. The journey from initial research to regulatory approval can take decades. Even after approval, long-term safety and efficacy data may take years -- or even additional decades -- to accumulate through post-market studies and meta-analyses. For those with progressive diseases like advanced glaucoma, waiting for decades of data may mean losing more vision than necessary -- and losing it permanently.
Real-World Evidence: Many side effects or benefits of treatments only become apparent after widespread use. This is why compassionate use programs and early access initiatives exist -- to ensure patients with no other options can still have hope.
Traditional Medicine as a Resource: Many natural compounds have been used for thousands of years in traditional medical systems and later became the basis for modern drugs:
- Digitalis (used to treat heart conditions) was derived from foxglove plants.
- Metformin, one of the most widely prescribed diabetes medications today, originated from Galega officinalis (French lilac), which was used in medieval Europe to treat symptoms resembling diabetes mellitus (excessive and/or sweet urination). Its active ingredient was refined into a blockbuster drug that has since expanded into applications beyond diabetes[2][4][16].
These examples remind us that innovation often starts with curiosity and exploration -- and often with anecdotal evidence from traditional medical systems.
5. The Limitations of Published Research
While published research is invaluable, it is not infallible. John Ioannidis, a professor at Stanford University School of Medicine and one of the world’s leading experts on research methodology, has demonstrated that much published medical research is flawed or unreliable[5][6]. In his seminal paper "Why Most Published Research Findings Are False," Ioannidis highlights issues such as bias in study design, conflicts of interest, and statistical errors that undermine trust in even peer-reviewed studies[30].
This doesn’t mean we should dismiss all research -- it means we must approach it critically while recognizing its limitations. Reliance on published research alone -- without considering traditional knowledge or personal experience -- is not a failsafe position. Every path we choose in managing glaucoma carries risks; ignoring emerging options simply because they lack extensive trials does not eliminate risk -- it only shifts it elsewhere.
Encouraging Open-Mindedness in FitEyes
To ensure FitEyes remains a supportive space for everyone:
- We Must Embrace Open-Mindedness: While skepticism has its place, we should also honor the spirit of innovation, self-experimentation, and empowerment that defines our community.
- Respect Individual Choices: Every member has the right to decide what’s best for their situation without fear of judgment.
- Share Evidence-Based Information: By staying informed about emerging therapies -- including their potential risks and benefits -- we empower each other to make thoughtful decisions.
By embracing open-minded discussions, our community can ensure all voices are heard and that members facing urgent or dire circumstances have every opportunity to explore available options. While caution is important, it must never overshadow hope or prevent us from considering new possibilities. Let’s continue to be the rebellious yet thoughtful community that sets FitEyes apart.
Selected Citations:
[4] https://pubmed.ncbi.nlm.nih.gov/28052534/ [5] https://pubmed.ncbi.nlm.nih.gov/28881000/ [6] https://pubmed.ncbi.nlm.nih.gov/29617882/ [7] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11010330/ [9] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9790139/