Visual Disturbances in ME

 

Visual Disturbances & Eye issues in

Myalgic Encephalomyelitis (ME)

(This webpage was updated in September 2025)

Visual Disturbances in ME - Research Highlights

Visual issues in ME are frequently discussed by people living with ME and may have a significant impact on the quality of everyday life for the ME patient. Some people have to stop driving, or find reading, watching television or doing usual creative hobbies to be a problem.

1. Prevalence and Symptom Types

• A symptom survey using the DePaul University Symptom Questionnaire (DSQ) revealed that among 59 ME patients, 92% reported sensitivity to bright light (“photophobia”), 88% had difficulty focusing vision or attention, and 86% experienced eye pain; about 61% reported loss of depth perception meresearch.org.uk

• Up to 75% of individuals with ME report general eye or vision problems, though these remain underrepresented in mainstream clinical guidelines meresearch.org.uk

2. Experimental and Objective Findings

Visual Attention and Eye Movements: ME patients show impaired visual attention, slower visual processing, difficulty filtering distractions, and slowed visual search capabilities. This supports patient-reported symptoms of difficulty focusing or following visual stimuli.

 

 

Eye Movement Dysfunction: While prosaccades (automatic eye jumps) are intact, ME patients struggle with antisaccades (directing gaze away from a point) and with smooth pursuit (tracking moving targets), indicating specific dysfunction in visual tracking mechanisms.  

 

 

Pattern-Related Visual Stress: Patients show increased visual distortions when viewing repetitive patterns (like stripes in text), suggesting heightened sensitivity to pattern glare, a possible behavioural marker for ME.  

 

Contrast Sensitivity & Reading Performance: Studies found that ME patients have reduced contrast sensitivity and a narrower spatial window of visibility, alongside slower maximum reading speed and poorer "crowded" visual acuity, where letters appear close together.    

 

Other Symptoms: Additional ocular signs frequently reported include blurred vision, halos, floaters, dry or itchy eyes, tunnel vision, depth perception loss, nystagmus, pupillary abnormalities, and general visual processing problems. 

Clinical Summary Table

Symptom Type / Mechanism	Evidence Highlight	Clinical Impact
Photophobia & Eye Pain	DSQ-2: 92% sensitivity to light; 86% eye pain	Light avoidance; use of tinted glasses; daily discomfort
Visual Attention & Processing	Impaired selective & divided attention	Difficulty reading, watching TV, multitasking
Eye Movement Dysfunction	Smooth pursuit and antisaccade deficits	Trouble following movement, scanning, navigating environments
Pattern Glare (Visual Stress)	Elevated distortions with patterned stimuli	Reading distress, visual fatigue
Contrast & Reading Acuity	Reduced contrast sensitivity, slower reading speed	Longer reading times, more effort required
Broad Ocular Symptoms	Reported: floaters, halos, dry eyes, depth perception loss, etc.	Varied visual disturbances affecting comfort and perception

Case Study: An Artist’s Experience

To bring some of the above research findings to life, here’s how one of the artists who featured in our 'Let Art Be a Way to Witness and Remember' online art exhibition (August 8th, 2025) described her own visual issues in the exhibition curation chat with me behind the scenes:

In February 2023, due to progression of ME, she lost sight in one eye. Since then, her remaining vision has worsened every few months. She consistently experiences blurring and must massage her eyelids to relieve fatigue. Floaters were prominent during decades of chronic migraines. Now, as her ME has become Very Severe, she wears wraparound amber-tinted glasses that block 100% of blue light. These alleviate some pain and help her tolerate light, though during crashes she still requires complete darkness.

Her clinical description aligns with:

• Photophobia and light sensitivity

• Blurry vision and visual fatigue

• Floaters linked to migraine history

• Progressive visual deterioration

• Use of blue-light blocking eyewear for symptom relief

Patient Experience Matters

The artist’s narrative deeply reflects the lived reality behind the data, highlighting compounded challenges of vision loss in ME, ranging from functional impairment to emotional loss.

Summary & Clinical Implications

Prevalence & Significance

Visual symptoms are common, impactful, and often severe in ME patients. Despite this, they are not usually included in diagnostic protocols.

Objective Correlates

Studies reveal measurable differences in visual attention, contrast sensitivity, reading performance, and eye movement control, suggesting neurological underpinnings rather than purely ocular causes.

Diagnostic & Therapeutic Value

These symptoms, especially those objectively measured, like pattern glare sensitivity, may offer new avenues for diagnostic markers, while symptom-focused interventions (e.g., tinted lenses, controlled visual environments, pacing visual tasks) may improve quality of life.

Blog piece by another person with ME who experiences visual disturbances

“In September 2010 it was my vision that ‘went funny’ first; my very first sign that something was off. It has been my most dominant and consistent symptom ever since.
It’s so hard to explain how it is, and the photos on this post are the closest I can get to showing what I see:

Blurred vision
Zigzag lines across my vision
Out-of-focus vision
Eye floaters
White flashes behind closed eyes
Eyelids that flicker when closed
A constant aura-like blur around the edge of my vision

I do also have a diagnosis of ‘migraine with aura’ and initially assumed I must be getting a migraine. But it is quite different, not least because I lose my vision completely when I get a migraine.

No tests have showed up anything untoward. I’ve need glasses since I was 7 and need a strong prescription. But with a correct prescription and regular checks all that’s been said is that if M.E. is affecting every muscle and every cell in the body, then the muscles and cells in my eyes must also be affected.

I often don’t notice it now, but since December it’s been harder to ignore. I’m begrudgingly going back to the optician next week* (my first port of call because a GP always sends me back there so I’m preempting it again).”  
 
by Anna Redshaw writer of The Slow Lane dot Com

Depiction of constant aura-like blur around the edge of vision from The Slow Lane dot Com by Anna Redshaw

Symptoms/features as reported to us by other people living with ME

Staring

Inability to focus vision (mentioned pg 7, 9 International Consensus Primer)

Zigzag lines across vision

Out-of-focus vision

Eye floaters

Impaired depth perception

Tracking issues

Poor spatial recognition

Fuzzy/ blurred vision

Double vision

Tunnel vision

Night blindness

Depth of field loss

Early cataracts

Eye pain

Dry eyes (do not hold tear film)

Itching eyes

Burning eyes

Flashing eyes (open or shut)

Seeing pinpoints of light in the dark

Aura-like blur around edge of vision

Light sensitivity (photophobia)

Reading fatigue

Eye movement fatigue

Vision related headaches following reading

Management Strategies for Visual Disturbances in ME

Visual symptoms in ME can be multifactorial, involving neurological, autonomic, and ocular components. Management requires a personalized, symptom-focused approach, as standard ophthalmological treatments often do not fully address the underlying dysfunction.

1. Environmental Modifications

Lighting control:

• Use dimmable, indirect lighting or amber-tinted lamps.

• Avoid fluorescent or harsh white light when possible.

• Heavy curtains or blackout blinds during “crashes” or high sensitivity periods.

Screen adaptations:

• Reduce brightness and blue light on computers, tablets, and phones.

• Use screen filters or software for low-contrast modes.

• Frequent breaks using the 20-20-20 rule (look 20 feet away every 20 minutes for 20 seconds), but only if tolerated without triggering a post-exertional response.

2. Visual Aids

• Tinted glasses: Amber or FL-41 tinted lenses have been reported to reduce photophobia and migraine-associated visual stress. Wraparound designs prevent side light penetration.

• Magnification tools: Large-print books, electronic readers, or text-to-speech technology may reduce eye strain.

• Contrast enhancement: High-contrast text and background combinations can improve reading comfort.

3. Pacing and Task Management

• Limit consecutive reading, screen use, or visually intensive tasks.

• Schedule activities during times of better energy.

• Use assistive technology to reduce visual load (voice commands, audiobooks, dictation).

4. Ocular Health Support

• Regular ophthalmological assessments to monitor for progressive visual loss or complications if possible.

• Artificial tears for dry eyes if present.

• Gentle eyelid massage or blinking exercises may help relieve fatigue, pain or strain.

5. Neurological and Migraine Management

• For patients with coexisting migraine history, interventions such as FL-41 lenses, light avoidance, or migraine-specific medications may provide indirect visual symptom relief.

• Occupational therapy can support coping strategies for visual attention difficulties.

Clinical Recommendations

Screening: Include visual symptoms in routine ME assessments, using structured questionnaires like the DePaul DSQ Form DSQ-2.

Documentation: Track visual acuity, photophobia, and symptom fluctuation to correlate with ME severity or crashes.

Interdisciplinary Approach: Involve ophthalmologists, neurologists, occupational therapists, and optometrists familiar with ME.

Patient Education: Inform patients about pacing, light management, and visual aids. Encourage self-monitoring of triggers and symptoms.

Research Participation: Encourage involvement in studies evaluating objective measures of visual function in ME to improve understanding and care.

Managing Visual Disturbances in ME

Please see our one-page sample guidance for ME patients

 

More about the science behind visual disturbances which we have already touched on

People with ME often report problems with their eyes and vision but the mainstream scientific literature rarely mentions it. In order to redress the balance, the Vision and Language Research Group, University of Leicester with funding from ME Research UK and the Irish ME Trust tried to identify and quantify vision-related problems in ME.

(i) 2013 paper from Hutchinson & Bedham presents the first of their findings:

https://www.meresearch.org.uk/research/abnormal-visual-attention/

(ii) 2018 paper from Frontiers explains more on visual issues in ME: https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2018.01468/full

The results published in 2018 indicate that basic eye movements to simple static targets are less accurate in people with ME and that moving eyes for even short periods of time induces eye-movement fatigue. This type of ophthalmological testing has helped to confirm that people with ME have a range of problems related to visual attention that are consistent with their self-reported symptoms.

"Visual symptoms in ME represent a group of distinct, quantifiable, clinical features that could significantly improve diagnosis and provide insights into underlying pathology. The purpose of the present study was therefore to explore the effect of ME on spatial windows of visibility using the spatial contrast sensitivity function."

(iii) The De Paul Symptom Questionnaire, the DSQ-2 which is based on research includes questions based on visual issues in ME, i.e.,

Eye pain,

Sensitivity to bright lights,

Unable to focus vision,

Loss of depth perception,

Blurred or tunnel vision after standing,

Aching of the eyes or behind the eyes.

The questions raised in the DSQ-2 form are below:

From the De Paul DSQ-2 Symptom Questionnaire

Q27. Eye pain
Q35. Sensitivity to bright lights
Q41. Unable to focus vision
Q43. Loss of depth perception
Q70. Blurred or tunnel vision after standing
Q81. Aching of the eyes or behind the eyes

From the De Paul DSQ-2 Symptom Questionnaire

 

and one number for severity

De Paul Symptom & Severity Questionnaire, DSQ-2

List of all the above mentioned Research/Studies with links

 

• Vision-related symptoms as a clinical feature of chronic fatigue syndrome/myalgic encephalomyelitis? Evidence from the DePaul Symptom Questionnaire here

and here: https://www.meresearch.org.uk/research/vision-related-symptoms/

• Patterns of abnormal visual attention in myalgic encephalomyelitis here

and here: https://www.meresearch.org.uk/research/abnormal-visual-attention/

• Characterising eye movement dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome, Badham, 2013, here and here: https://pubmed.ncbi.nlm.nih.gov/23918092/

• Visual stress could be a symptom of Chronic Fatigue Syndrome, research suggests, 2015, here and here: 

https://www.sciencedaily.com/releases/2015/11/151124082235.htm

• Visual Aspects of Reading Performance in Myalgic Encephalomyelitis (ME), 2018, Wilson et al, here and here:

https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2018.01468/full 

• Reading between the lines of visual discomfort in Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), thesis, 2016 by Rachel Louise Wilson here and here and here:

https://www.meresearch.org.uk/research/reading-between-the-lines-of-visual-discomfort-in-myalgic-encephalomyelitis-me-and-chronic-fatigue-syndrome-cfs/ 

 

• Restricted Spatial Windows of Visibility in Myalgic Encephalomyelitis (ME), Ahmed, Hutchinson et al, 2018 here and here: https://pmc.ncbi.nlm.nih.gov/articles/PMC6835387/ 

 

• Characterising eye movement dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome, Badham, 2013, here and here: 

https://www.researchgate.net/publication/255689799_Characterising_eye_movement_dysfunction_in_myalgic_encephalomyelitischronic_fatigue_syndrome

Disability Claim (US) Concerning Visual Disabilities

In 2018, Brian Vastag, a journalist, previously with the The Washington Post, advocate, and person living with ME, was able to prove with qEEG and cognitive tests he had "significant problems with visual perception and analysis, scanning speed, attention, visual motor coordination, motor and mental speed, memory, and verbal fluency" winning his long term disability (LTD) claim; more here:

https://www.meaction.net/2018/06/04/victory-for-me-disability-claim-court-upholds-plaintiffs-lawsuit-after-being-denied-disability/

Our advice: always get any new visual/eye symptom/issue checked out by a medical expert/optician.

Disclaimer: 

The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance.