Charles Bonnet Syndrome Foundation

10/06/2025

STUDY EXPLORES CBS AWARENESS AMONG EYE SPECIALISTS

A new study published in the journal, International Ophthalmology, investigated the responses of over 300 eye specialists to a series of questions on Charles Bonnet syndrome. More than 90% of these responses came from ophthalmologists in Europe and Asia.

Some of the findings include:

• 63% of the ophthalmologists were aware of CBS, yet only 21% were able to accurately answer 4 questions pertaining to the syndrome. (eg. definition, content of hallucinations, visual acuity range)

• 66% of the ophthalmologists had not encountered a single case of CBS in the past year. Linked to this was the observation that 84% conceded they never screened for CBS in their patients.

• Over 65% of eye specialists believed that suspected CBS cases should be referred to neurology and psychiatry.

SUMMARY

In one sense, there are no surprises from these findings. Rather, they merely confirm what has long been suspected. Even so, it highlights the road ahead for vision-impaired patients (& their loves ones) to receive adequate responsiveness from eye specialists.

The finding that the majority of ophthalmologists (65%) believe that suspected CBS cases should be referred to neurology and psychiatry suggests a reluctance to assume responsibility for the syndrome. If these outcomes are reflective of the wider field of ophthalmology, then it appears there's a concerning tendency for this clinical specialty to absolve itself of handling the syndrome.




REFERENCE: Gunduz et al (2025). Awareness of Charles Bonnet syndrome among ophthalmologists: a survey study. Int Ophthalmol Vol 45:207.

21/02/2025

CBS MEDIA OPPORTUNITY

ABC (Adelaide) in South Australia is seeking a person under 39 yrs of age who is willing to discuss their personal journey of living with CBS for an upcoming ABC program. The person needs to be living in Adelaide, Sth Australia.

Anyone who is interested in taking up this offer, please contact Scot Muirden at the CBS Foundation: scot@charlesbonnetsyndrome.org

27/11/2024

Hello all,

Professor Peter Allen and his team in the UK is undertaking the following study on CBS [which is also extended to Americans & Australians]. If you have a spare 10 mins to undertake the survey, please support this endeavour. Professor Allen writes:

"We are interested in a possible relationship between physical activity levels, sleep, and the prevalence of the visual phenomenon of Charles Bonnet Syndrome. We are currently conducting a survey to better understand how physical activity and sleep levels may impact these visual phenomena. If we find a relationship, we will be conducting further work to try and help people with Charles Bonnet Syndrome reduce the visual phenomenon they experience. The survey takes approximately 10 minutes and is aimed at people with vision loss who live in Australia and who have Charles Bonnet Syndrome. The link to the survey is here, it is appropriate for screen readers too:
https://aruspsych.eu.qualtrics.com/jfe/form/SV_5vCoWnQYF5OKsbc

24/09/2024

CBS VIDEO DEPICTION FROM AUSTRALIAN STUDY
PhD candidate, Vicky Hamilton, of Griffith University in Queensland, Australia is now in the latter stages of her CBS study.

One facet of her study is to collect people's personal accounts of their CBS and try to depict those visions in a way that can be made accessible to a wider audience: for example, an installation display at an art exhibition. Vicky has very kindly made available to the Foundation a few snippets of her project. To learn more about Vicky's work, please visit: https://cbsvisions.com/

The depiction presented here is from subject 50 and the visions encountered in her bedroom. In her words: "Why am I seeing this, what is happening to me? I have sight loss but didn't associate it with that, until I told my optician what was happening. Once I knew what was happening, they were beautiful little drawings. A lot like those my grandchildren and children drew when they were young. It's usually when I wake up in the morning after I've got up and I'm coming back into the bedroom. The room, the ceiling, the wall, the carpet, and the bed is covered from top to bottom... it was like a checkerboard. All very brightly coloured: pink, blue, yellow, green, orange, and purple. The visions where pleasant once I realised what was happening."

03/09/2024

WARNING to all members

Over recent times, two posts have been submitted to the group promoting T-shirts for sale: one a generic one about “being unique” and another with the slogan “CBS awareness”.

We believe that both posts contravene the rules of the group (ie. no commercial advertising) and further we have some reason to suspect they may be scams. The ‘CBS awareness’ t-shirt is not endorsed by any known CBS organisation (that we are aware of) and there’s some evidence already the links provided may be bait for online theft. Please exercise caution.

We have sent warnings to both these posters and any subsequent breach will have them permanently removed from the group. Unfortunately, nowhere online seems to be safe from people who have ulterior motives.

13/06/2024

DO YOU HAVE VISION & HEARING IMPAIRMENT?

For those who are living with dual sensory impairment [or as a loved one for someone contending with this situation], Macquarie University in Sydney is seeking participants to aid in their research. You need to be an Australian citizen to apply. Please view the poster below for more details.

22/04/2024

MEDICAL OPTIONS FOR CBS: THE CURRENT STATE OF PLAY

Often when people look online for information about CBS, particularly possible treatments, they will come across comments that there is no treatment let alone a cure. At a general practitioner or specialist consultation, some patients are told, "there's nothing we can do for you". To read this online or to hear directly from a medical practitioner can be really deflating. However, these views are slightly misleading.

The Foundation wishes to outline the actual state of affairs when it comes to medically treating CBS:

1. The primary medical way of treating CBS is undertaking any viable procedure to improve a person's vision. An example would be cataract surgery. There are certainly case reports of a person's CBS completely disappearing upon vision improvement. Even so, two cautionary points need to be made. First, even when a medical procedure has led to the improvement of a patient's vision, there is no guarantee that it will resolve CBS. We don't know the percentages of people whose CBS has resolved after improvement of vision as no research has been conducted into this particular matter. Second, some eye conditions currently have no medical interventions available to the patient to improve vision.

2. The second option is prescribed medication. There are five principal categories that these medications fall under: anticonvulsants (anti-seizure), antipsychotics, antidepressants, benzodiazapines ('sedatives') and acetylcholinesterase inhibitors (designed to block the break down of the chemical neurotransmitter, acetylcholine). All of these 5 categories have encountered some success with treating CBS and this has been reported in various medical journals. The problem is that no prescribed medication - from any of these 5 categories - is effective for the majority of patients. This means that a prescribed medication sometimes leads to complete resolution of CBS but the emphasis sadly is on 'sometimes' so the success rate of any of these medications is modest at best.

3. Whether any of the above categories of drugs could be appropriately prescribed for an individual's unique circumstances would require the careful consideration of a medical practitioner. If you or a loved one is considering going down this path, it's useful to also ask about possible side effects from such medications so one can make an informed decision.

4. Aside from prescribed medications, there is a non-invasive medical procedure known as repetitive transcranial magnetic stimulation (rTMS). This relatively safe procedure introduces magnetic pulses to a specific region of the brain in order to adjust brain activity. rTMS is already widely used for treating depression, stroke rehabilitation and pain management. In Australia at least, for these conditions, the rTMS procedure is typically covered by the health care system (Medicare) but its usage for CBS is not presently covered. Consequently, this option may well mean out-of-pocket expenses and the costs could be quite steep. Preliminary exploration of rTMS for CBS patients has been occurring over the past two decades and shows some promising signs. However, barriers still remain in terms of formal recognition, accessibility and affordability. In terms of countries outside Australia, whether rTMS is (partially or fully) subsidised by the government or one's health insurance premium would need to be clarified.

5. The above explores medical treatments currently available for CBS. There are non-medical options which can be explored too. Go to this link for more:

Charles Bonnet Syndrome site is a resource for members of the public and health care professionals to access information and assistance.