Since the publication of Ireland’s National Endometriosis Framework, we are at a pivotal moment for patient safety.

While structured care pathways are being developed, unregulated online platforms are increasingly becoming the primary source of information for vulnerable patients. This presents a serious public health concern.

I am formally calling on the Minister for Health to introduce stronger oversight and regulation of online medical support groups operating in Ireland.

Why This Matters

Across social media platforms, particularly within closed Facebook groups, there has been a significant rise in:

• Unmoderated medical misinformation
• Anonymous posts being used to spread unverified claims
• Defamation of individuals, organisations, and specialist services
• Coordinated online harassment campaigns

The recent introduction and misuse of anonymous posting features in closed groups is especially concerning. These tools are increasingly being used to spread harmful allegations without accountability.

Patients navigating chronic illness deserve accurate, evidence-based information - not gossip, misinformation, or character attacks.

Personal Impact & Broader Pattern

Since public platforms were established, I have personally experienced ongoing online defamation. Over the past number of years - especially the past 14 months, this escalated into:

• Replication of my work without credit
• Structured and coordinated attempts to discredit my reputation
• The spread of misinformation regarding my advocacy

This matter is now being legally investigated.

However, this is not just about one individual or keyboard warriors.

This reflects a wider systemic failure to regulate online spaces where vulnerable patients seek support. Without proper moderation, these platforms can cause significant reputational harm and mental health damage - not only to advocates and professionals, but to patients themselves.

What I Am Calling For

I am calling for:

• Clear standards for moderation in Irish-based medical support groups
  Accountability mechanisms for administrators
• Oversight where health information is being disseminated to large patient communities
• Stronger engagement with platforms such as Meta regarding misuse of anonymous features
• The ability to shut down groups that repeatedly facilitate harassment and misinformation

The safety of people’s mental health and reputation must be protected with the same seriousness as physical health.

Regulation must evolve alongside digital platforms.

Ireland now has a published framework for endometriosis care. Our online patient spaces must reflect that same standard of responsibility and evidence-based integrity.

This is about patient safety.

This is about accountability.

This is about protecting community.

Please continue to share and support this petition as we call for stronger safeguards in online medical spaces.