Daniel Kondziella’s recent opinion piece, “Visual Snow Syndrome and the emperor’s new clothes”, is as confounding as it is irresponsible. The author states “every now and then, I see a person with Visual Snow Syndrome”. Evidently and self-admittedly, he has limited experience with VSS patients. Despite this, he still attempts to refute the findings of numerous accredited doctors, researchers, and scientists who have dedicated their professional lives to learning about Visual Snow Syndrome (VSS) and helping patients. Moreover, he refuses to view “people with Visual Snow” as “patients”. The author claims that VSS is nothing more than a “harmless psychological phenomenon”, rejecting its pathology and denying the negative effects its visual/non-visual symptoms can have on patients. He feels that because the impact of VSS is “entirely benign”, there is no need to develop treatment strategies to help anyone with VSS. And thus, he discourages the medical community from pursuing this any further.

Historically, people with Visual Snow Syndrome have been marginalized and misdiagnosed. The author even acknowledges that its “existence has gone undetected until a few years ago”. Progress for VSS did not come easily and as he points out, “increasing scientific publications, wide media coverage, and extensive activity on social platforms are evidence of growing awareness of visual snow syndrome”. We suspect that was the impetus for him penning an opinion. Another excerpt we found telling was when the author offhandedly states that after having seen a person with VSS “every now and then”, “almost invariably, these people leave the consultation relieved after being reassured that visual snow syndrome is a harmless condition”. Any patient being reassured by their doctor that any symptoms of unknown origin are harmless will always feel relieved.

People all over the world have Visual Snow Syndrome. VSS affects everyone differently and ranges in severity. Some people have all or some of the visual and non-visual symptoms of VSS. There are also people who are born with VSS and others who experience spontaneous onset of VSS. Those born with VSS have always lived with its symptoms. Many of them grow up believing everyone sees and experiences life the same way they do. This is different than having to adapt to a completely new way of life, as people who never had VSS before do. For them, there is often a stark contrast between their former and current life (pre-VSS symptoms versus post-VSS symptoms).

The author did not reveal any information/data about the patients he saw. Visual Snow Syndrome affects patients differently depending on a myriad of factors. These include the severity of their VSS, which associated symptoms they have, if they have any preexisting conditions besides VSS, if they were born with VSS or experienced spontaneous onset later in life, socio-economic factors, genetics, and proximity to a physician with knowledge of Visual Snow — all of which must be considered.

The author even acknowledges that a “tiny fraction is simply not representative of the vast majority”. So how would he have an understanding of the vast majority’s struggles with VSS without the same research and personal accounts of people online that he is trying to discredit? This exemplifies the absence of logic and highlights an attention-seeking agenda or ignorance.

Ultimately, the author appears bothered by people who are bothered by Visual Snow Syndrome. He tries to invalidate the feelings and struggles of anyone who suffers because of its symptoms.

The author also claims that “the biological mechanisms of visual snow syndrome are poorly understood”. Although it was not his intent, ironically, this statement only rationalizes the need for further VSS research in order to better understand the condition. However, he links this poor understanding of VSS to “case reports and surveys based on self-help groups.” The author criticizes researchers for recruiting “self-elected people via online”. And yet, that was exactly what he did in his 2020 paper, “Prevalence of visual snow syndrome in the UK”, by utilizing crowdsourcing methods for his study.

The hypocrisy notwithstanding, the author claims, “these people come from a tiny fraction of the population with visual snow who are not only aware of the condition but also sufficiently concerned or interested to participate in the study”. There are still a limited number of medical professionals who openly advertise studies about VSS or specialize in the syndrome. Researchers have also had to adapt to recent times and obtain data virtually. Naturally, those affected by the condition and their families will have to go online if there are no opportunities or support presented to them offline. We cannot dismiss data from everyone who has a condition or is affected by it as “biased”; that would be unreasonable and discredit an endless amount of other accepted studies as well (unrelated to VSS). In fact, people who have a condition understand what it is like to have it better than anyone. They do not deserve to be disregarded.

Like a movie critic, the author is entitled to his opinion. But unlike a movie critic, the author is a doctor who is creating dangerous moral and ethical implications.

To make an accurate statement that applies to all individuals with Visual Snow Syndrome, one must first understand that not all patients are the same. Then, they must consider a proper diagnosis based upon symptoms and the consequential impact these symptoms have on all patients, not just a handful that were seen a “few times”. To date, the VSI team has heard from thousands of people affected by VSS in 88 countries and counting. Most are desperate for answers and resources.

Studying VSS accurately, one will ultimately discover that for some, the syndrome is mild but still frustrating. And for other patients, their symptoms completely derail their life, forcing them to face difficulties with daily tasks. Activities and responsibilities, such as driving, reading, watching TV/movies/etc., working on a computer, or attending school often become impossible. There is a tremendous amount of self-discipline required to function with VSS. It is exhausting trying to complete a daily task while your entire visual field is swarmed with static, blinking dots, flashing strobing lights, and palinopsia. From going outside to even just looking at a light source, such as a lamp, photophobia can be physically painful. Furthermore, VSS is distinct from migraine/migraine aura, but people with VSS are prone to frequent migraine headaches; the negative impact migraines have on patients’ lives is obvious and has been well-documented for years. This is also the case with tinnitus, another non-visual symptom of VSS. Naturally, having to endure all of this and missing out on many areas of life can be distressing. As a result, VSS can be debilitating and have devastating effects on people’s lives. People with VSS often develop anxiety, depression, and/or derealization because of the suffering their symptoms cause them. Dismissively being told nothing is wrong when there so clearly is, is both insensitive to VSS patients and potentially detrimental to their physical/mental wellbeing.

The author minimizes the struggles of a historically-marginalized group who have only begun to receive overdue acknowledgement and care. And now that VSS is gaining more awareness, which has been achieved through hard work, vulnerability, and fact-based evidence, he wants to ride the coattails of his predecessor’s success by attacking their work. The author masks his disrespectful and unnecessary critique of VSS researchers, VSS patients, and their families as “scientific commentary”.

People with medical conditions, like VSS, have to go through enough. There is a plethora of scientific data that substantiates autonomy, legitimacy, and negative impacts of Visual Snow Syndrome. Clinical and scientific data has already proven this condition is real. Clinical and scientific opinion also maintains that VSS can and does affect countless patients.

To ignore both researchers and patients by saying that VSS is “benign” is equivalent to turning back the hands of time. But for what purpose?

There is nothing wrong with analyzing the methods and other academic components of a study. It is the insensitivity and blatant disregard for the daily suffering of thousands of people worldwide that is both reductive and offensive.

The Visual Snow Initiative wants to assure everyone with Visual Snow Syndrome (VSS) and the medical community that the significant progress in awareness, education, and research will continue its upward momentum.

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