A 47-year-old Greek man who has lived with multiple sclerosis for 18 years has launched an independent online platform to track scientific research and emerging treatments for the disease, separating evidence-based findings from exaggerated claims and medical misinformation.
Tasos Fokas created MyelinWatch (myelinwatch.com), a bilingual platform in Greek and English that began operating in September 2026. It provides updates on major research developments, a treatment guide, information on experimental approaches to myelin repair, and details of scientific studies and research programmes. The website also features a dedicated section for Greece.
Fokas, an audiovisual producer who works with the Centre for Combating Disinformation, told the Athens-Macedonian News Agency (AMNA) that he established the platform as a private initiative to catalogue scientific studies and emerging treatments for multiple sclerosis (MS).
“The issue that concerns the community is reversing symptoms, as there is no definitive cure for the disease,” he said.
According to Fokas, MyelinWatch operates independently and receives no institutional funding. Although the website accepts voluntary donations through a QR code, he personally covers its operating costs. The platform serves exclusively as an information resource and does not provide medical services or medical advice.
Tackling misinformation about experimental treatments
Fokas said widespread misinformation about experimental treatments motivated him to establish the platform.
“In recent years, we have repeatedly seen misinformation on this subject. Everything that gets announced, even in social media posts, is presented as the treatment that will cure everyone. The truth is very different,” he said.
He explained that existing treatments can reduce relapses and slow disease progression, while other interventions help manage symptoms, but none constitutes a definitive cure.
“The misinformation surrounding the disease prompted me to create MyelinWatch,” he added.
Artificial intelligence combined with human oversight
MyelinWatch uses artificial intelligence (AI) to identify and process new scientific publications. Fokas employs different AI models as supporting tools, while cross-checking information against original sources.
Every morning, an automated system searches scientific databases, including PubMed and Europe PMC, clinical trial registries such as ClinicalTrials.gov, and announcements from universities, research teams, companies and regulatory authorities.
However, automation does not replace human oversight.
Before publishing information, Fokas examines the original source, the announcement’s content and the evidence supporting the findings. He also compares new information with studies already recorded on the platform to establish whether it represents further developments in existing research or a new discovery.
The system suggests potential additions, removals and new entries, but Fokas makes the final decisions and publishes the material manually.
MyelinWatch tracks research from early laboratory experiments through clinical trials and the potential approval of treatments. It distinguishes preclinical findings from results obtained in human studies and records cases in which initial expectations have not been confirmed.
“The existence of a study or a promising laboratory discovery does not, in itself, prove that a treatment is effective in patients,” Fokas said.
Personal experience drives the initiative
Fokas’s work on multiple sclerosis information stems directly from his own experience with the disease.
He said his first neurological episode occurred in 2005, when he was 26. He experienced paralysis in his left arm and leg, along with speech difficulties, but doctors took approximately three years to diagnose his condition.
He subsequently tried different treatments, encountering side effects and difficulties administering injections himself. These experiences also highlighted the importance of practical support for people living with MS.
His work with the Centre for Combating Disinformation further exposed him to tactics used to spread misleading health claims.
“I have seen the techniques used to mislead people and make money at the expense of patients,” he said.
Fokas referred to claims that present scientific findings outside their proper context, exploiting fear and creating false expectations about treatments that do not exist.
Through MyelinWatch, he aims to provide a reliable resource that helps people with multiple sclerosis, their families and the wider public distinguish credible scientific progress from unsupported promises.
(Source: AMNA)
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