World Health Organisation Grants 'Monumental' Diagnosis Code to Visual Snow Syndrome

For Steve Gillis, tinnitus, brain fog, and visual disruptions have become "ever-present companions" ever since he recovered from a virus in 2023.

He said he sees through "a set of filters" with a black and white pattern akin to analogue TV static, and has dark floaters that drag across his vision.

Even after numerous tests spread across half a year, no alterations were found in either his eyes or brain.

Mr Gillis was ultimately diagnosed towards the end of last year with visual snow syndrome (VSS), which is a neurological disorder impacting vision, auditory perception, equilibrium, sensory interpretation, and cognitive abilities.

Experts approximate that VSS impacts roughly 2 to 3 percent of the worldwide population, and they state that the precise cause remains unclear. However, possible triggers might include concussion, illness, pregnancy, or migraines.

Sometimes, people can be born with VSS.

Mr Gillis mentioned that the condition greatly impaired his capacity to drive, read printed material, and play golf. He frequently felt overwhelmed when navigating shopping centers and public spaces.

"However, even when I'm at home and there are several individuals in a room with various discussions taking place, I frequently end up retreating to my bedroom or simply withdrawing from that setting," he explained.

Often, I encounter remarks like, "I heard you have an illness, yet when I see you, you appear to be doing well," implying that since I seem okay externally, I should feel perfectly fine internally.

it might feel very lonely.

Looking for answers

Mr Gillis endured a lengthy path to his diagnosis, expressing frustration over what he saw as insufficient knowledge among healthcare providers.

He stated, 'The guidance essentially amounted to "We hope your body can figure out how to heal itself," and "Good luck."'

Dr Steve Leslie, a behavioral optometrist based in Perth, mentioned that individuals dealing with VSS frequently face rejection from healthcare providers.

"Quite often, individuals consult with five or six physicians in search of answers, yet nobody provides a diagnosis due to the limited awareness surrounding this condition," he explained.

In December 2024, the World Health Organization assigned VSS an identification code within the eleventh version of the International Classification of Diseases (ICD-11). Advocates believe this could result in increased acknowledgment and public understanding.

The inclusion came after advocacy efforts by the international nonprofit organization, the Visual Snow Initiative, which took place a year earlier.

Sierra Domb, who established the program, herself deals with this condition and mentioned that she was informed obtaining a permit might take between 30 to 50 years—a timeframe she chose not to endorse.

She mentioned that tears came down when she got the "momentous" news regarding the diagnosis code.

She mentioned how her thoughts instantly turned to all those individuals and their loved ones who had been looking for answers for many years, only to be ignored, told that their symptoms did not truly exist, or that they were just exaggerating, or even being brushed off because they were considered ‘too young’.

Dr Leslie mentioned that the ICD code brought significant relief to patients, and she hopes this will result in increased research prospects as well as greater recognition of the issue amongst healthcare professionals.

Mr Gillis expressed hope that this addition would lead to "increased recognition among healthcare professionals."

He mentioned that doctors could more easily identify, counsel, and potentially provide treatment for individuals suffering from this condition in the future.

Following a difficult year, Mr Gillis is set to look ahead towards an international journey with his spouse and caregiver, Jenny.

Even though VSS had transformed his life, according to Jenny, her spouse's fortitude was astounding.

"I must say, taking him places can be quite annoying since he isn’t an ideal passenger," she chuckled.

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Brain Scans Reveal Six Unique Forms of Depression and Anxiety

In the future, seeking assistance for depression could include a brief brain scan to determine the best treatment approach for you.

A study examining brain activity in individuals with depression and anxiety both at rest and when performing particular tasks revealed six distinctive patterns of neural activity, associated symptoms, and reactions to therapeutic interventions.

The researchers from both the US and Australia who carried out the study also identified treatments that are more probable to be effective for certain categories. Consequently, this might enable physicians to better pair patients with optimal therapies according to their brain activity patterns.

"The prevailing 'one-size-fits-all' method of diagnosis in psychiatry often results in patients going through various treatments via a process of trial and error," says Leonardo Tozzi from Stanford University along with his team. write In their published paper, they describe it as protracted, costly, and exasperating, noting that 30-40 percent of patients fail to achieve remission after attempting one therapy.

The researchers examined 801 primarily untreated participants who were diagnosed with either major depressive disorder , generalized anxiety disorder , panic disorder , social anxiety disorder , obsessive-compulsive disorder , or post-traumatic stress disorder , or a mix of these. Additionally, they incorporated 137 individuals without the conditions as control subjects.

Functional MRI ( fMRI Brain scans were utilized to obtain 41 measurements of activation and connectivity for each participant, concentrating on six neural networks associated with depression. The imaging was conducted both during periods of rest and while participants engaged in cognitive and emotional tasks.

Machine learning was utilized to group individuals suffering from depression and anxiety into six categories according to particular brain circuits that show either heightened activity or reduced function compared to one another and the healthy control subjects.

As far as we know, this is the first instance where we have shown that depression may stem from various impairments in how the brain operates, says lead author Leanne Williams, a psychiatrist and behavioral scientist at Stanford University.

The team subsequently randomly allocated 250 participants to be prescribed one of three antidepressants or to undergo talk therapy. The antidepressant venlafaxine performed most effectively for one specific group: individuals with overly active cognitive areas of the brain.

Counseling was more effective for individuals who exhibited greater activity in areas of the brain associated with depression and problem-solving. Conversely, those showing lower activity in the brain’s attention circuits derived lesser benefit from counseling, which might imply they could see more advantage from initially addressing their attention-related issues through other means. the reduced activity when taking medication.

"To genuinely advance the discipline towards precision psychiatry "we need to pinpoint the treatments that are most likely to succeed for patients and initiate those treatments as quickly as possible," said public health scientist Jun Ma from the University of Illinois. says .

Having data about their brain activity could assist in tailoring more accurate treatments and medications for individuals.

In 2023, some members of the same team recognized a novel cognitive biotype Of depression, which impacts 27 percent of individuals diagnosed with major depressive disorder. The cognitive impairments – related to attention, memory, and self-regulation – typically remain unchanged when treated with antidepressants that target serotonin.

And earlier this year Williams and a fellow researcher employed fMRI technology to pinpoint individuals possessing the cognitive biotype, achieving a prediction success rate of 63%, as opposed to just 36% without using fMRI. Investigations into new therapies specifically targeting this biotype are currently underway.

Depression is complex , as are the factors contributing for it. This process might require considerable time. those who have access to treatment to find one that helps , should they ever decide to. So every step Moving towards a more efficient, tailored approach proves beneficial.

Feeling extremely frustrated within the realm of depression treatment due to the lack of alternatives for this one-size-fits-all method. says Williams. "Our aim is to determine how we can achieve success on the initial attempt."

The study has been released in Nature Medicine .

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