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. 

Oesophageal Spasms and M.E. - Swallowing Issue

 

 

Introduction

Muscle spasms have been found to occur in people with ME; they include oesophageal spasms.  Muscle spasms are unintentional, involuntary, and painful muscle contractions. The pain from spasms can be very sharp and intense.

Oesophageal Spasms

Oesophageal Spasms can be felt as extreme pain in the centre of the chest that sometimes radiates to the chest or mid-back & difficulty swallowing or an inability to swallow

 

The above listed features have been reported in ME, in particular in Severe ME. We are aware of the features directly from feedback from the severe ME community and through the horrendous stories of battles with healthcare providers to get tube feeding set up for severe ME patients suffering from malnutrition.

 

What do oesophageal spasms feel like?

Oesophageal spasms can cause mild to severe symptoms. Some people experience no symptoms.

 In some cases you may have:

 - Chest pain that may feel like heartburn (burning sensation in the chest) or, less commonly, a heart attack.

 - Trouble swallowing foods or liquids (dysphagia).

 - Pain near the breastbone when you swallow or at other times.

 - Sensation that something is stuck in your throat.

 - Food or liquid comes back up after you swallow it (regurgitation).

 

What causes oesophageal spasms?

The precise cause of oesophageal spasms is unknown. Some in the medical community believe the problem results from faulty nerves that are responsible for how the oesophagus muscles work.

Too much acid in the oesophagus could also lead to the problem. Excess acid can be due to having heartburn for a long time.

Some people notice oesophageal spasm symptoms after eating hot or very cold food or drink. But spasms can happen anytime, even when you’re not eating or drinking. The symptoms of oesophageal spasms usually come and go. Or symptoms may come on suddenly, out of nowhere. Symptoms may last for a few minutes or more than one hour.

How Does the Oesophagus Usually Work?

Usually, after you swallow, oesophagus muscles contract (flex and relax). When the oesophagus works as it should, this wave of coordinated contractions moves food or liquid down to your stomach.

 

If you have oesophageal spasms, these contractions don’t work correctly. Unusually powerful or ineffective muscle contractions in the oesophagus can make it difficult for food or liquid to move through your oesophagus.

Left untreated, moderate to severe cases of oesophageal spasms can negatively affect your quality of life. Symptoms may make eating difficult, which can lead to nutrition imbalances over time, weight loss and other issues.

Patient Feedback

We recently received the following feedback from a person with severe ME who would appreciate any documents/research/one pager for the purposes of educating healthcare professionals specifically about oesophageal spasms in ME and re nutrition and a possible treatment.

We have some information re oesophageal spasms in general and about malnutrition in ME but not specifically anything about oesophageal spasms.

 

 (⚠ a difficult read ⚠)

 

 

"I had a rather scary experience on Tuesday night. I choked on sticky dessert, ended up coughing so much to the point of vomiting, followed by a possibly allergy attack and my body going into shock.

Rushed to hospital, sirens and all. Got injection while in the ambulance for developing a rash.

Was monitored in A&E until my BP went down.

Doctor called it a spasm of oesophagus (don’t remember medical term of spams)

But reconfirming to be much more vigilant about food consistency. No more [food] trials. Soups only. And things I know are ok. But these are ever diminishing. Sadly.

Had meeting that morning with the speech and language therapist and we kind of came to [the] same conclusions.

Chef in response made me a puréed dessert which even eating three spoonfuls created this response.

These spams are a medical thing which could happen again.

Got back here during the night 13:30am.

Am ok. But still in a lot of pain, my throat and my body. And dizzy.

It was all too much for my body. And mind.

Resting lots. More than I was already doing.

 

Ps

Still in a lot of pain and wake up exhausted.

Will take a while to recover it seems.

My body was shaking uncontrollably at some point, and teeth clattered at enormous speed. Unable to speak clearly, confusion and I think that is where the remaining body pain is from."

 

~ Severe/Very Severe ME patient

Guidelines/Lack of Guidelines

There are general guidelines on Oesophageal Spasms available eg via link below but nothing specific for ME/Severe ME. We are reluctant to share when they are not specific to ME and we don’t know enough about Oesophageal Spasms in severe ME.

Please use any recommendations with caution.

Treatment recommendations e.g., certain drugs may not be suitable for most people with ME/Severe ME but may be useful for some less severe patients.

Guidelines from Cleveland Clinic here

Further Reading

Oesophageal Spasms and Swallowing Difficulty (Dysphagia) in ME are mentioned in the ebook ‘Chronic Fatigue Syndrome: A Treatment Guide’, 2nd Edition by Erica Verrillo published in 2012. from page 5510. Please see extract below.

‘Esophagus
The esophagus is an 8- to 9-inch long tube that extends from the base of the throat, just below the Adam's apple, to the stomach. Its function is to transport food from the throat to the stomach by means of peristaltic action.
The upper third of the esophagus consists of striated muscle, and the lower two- thirds consist of smooth muscle. The two valves at the upper and lower ends of the esophagus

- the upper and lower esophageal sphincters, respectively - allow food to pass first into the esophagus, then into the stomach. 

The lower valve also prevents reflux of corrosive stomach acid into the esophagus and throat.

Problems with the esophagus can arise from faulty operation of the lower valve (lower esophageal sphincter) or from the muscles responsible for peristalsis.

One of the more painful experiences in ME is the esophageal spasm. Because the spasm usually occurs in the center of the chest, the pain is frequently mistaken for a heart attack. An esophageal spasm can feel like a tight, squeezing pain that sometimes radiates to the stomach or mid-back. Unlike cardiac pain, however, the pain does not radiate down the arms or increase after exertion.

Esophageal spasms in the striated muscle portion of the esophagus produce a cramp so excruciating that it can send you straight to the emergency room.
Spasms in the lower portion of the esophagus are painless but the blips, pops and twitches are nonetheless disturbing. 

Spasms in this area are generally thought to be caused by an exaggerated motor response to peristalsis; that is, the esophagus contracts too much. 

Repeated spasms of this nature are referred to as diffuse esophageal spasms and are not uncommon in people with ME.

TREATMENTS

Treatment of esophageal spasms is somewhat limited because the problem is usually not chronic. Muscle relaxants may help diminish the force of the spasm in those who experience spasms in the upper esopha-gus. 

Swallowing something that coats the esophagus (like kefir) can ease the cramp.

Avoiding foods that irritate the stomach also helps. Spasms in the lower part of the esophagus are sometimes caused by re-flux. 

Carbonated drinks, acid foods, foods that are too hot or too cold, or indeed any food to which there is sensitivity may cause esophageal spasms. Even sudden changes in temperature, (for example, a hot shower) can trigger esophageal spasms in the sensitive individual. 

Emotional upset and stress can exacerbate this problem. Avoidance of esophageal stressors, treatment of reflux, and general stress management can help reduce the frequency and severity of esophageal spasms.’

Note

We are not medical professionals; please use any recommendations with caution.

We will update re any suggested treatment/management for Oesophageal Spasms in ME when we know more. 

You are welcome to add any personal feedback if you are happy to have it on a public page; if you'd prefer to email us any personal feedback you can email us.

Our email address is info@meadvocatesireland.com

Thank you to the ME patient who contacted us for your important feedback.

And thanks to the ME community for any feedback and support.

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. 

   

Anaesthesia and M.E.

Introduction

In addition to physical activity, cognitive activity and orthostatic stress some patients with Myalgic Encephalomyelitis are also very likely to relapse with anaesthesia and need extra care during all stages of surgery.

Whether or not they have a formal diagnosis, some patients with ME may be sensitive to certain drugs used for anaesthesia. Your anaesthetist may need to create a special anesthesiology protocol for you.

Preop Assessment

A preop assessment gives patients an opportunity to discuss their needs prior to attending hospital and to raise any concerns they may have; preop is an opportunity to:

• discuss in advance of surgery any sound sensitivity, light sensitivity or chemical sensitivities;

• ask whether it's possible to minimize sleep-time disruptions e.g., middle of the night blood pressure monitoring, etc;

• discuss any food sensitivities in advance;

• discuss temperature sensitivities, and possible accommodations including adjustment of operating and recovery room temperatures, provision of extra blankets, pillows, etc;

• discuss the possibility that you will need extra hydration before, during, and after surgery.

• get your surgeon's office to consult with your doctor/consultant re POTS; doctors may not be familiar with the finding that many POTS and ME patients have low blood volume and may be reluctant to provide more hydration than they would a healthy person);

• discuss the fact that it may take you longer to recover from surgery;

• discuss the fact that you may experience more pain than healthy people having the same operation/procedure;

• discuss pain management;

• discuss your other care needs (introduce your Personal Care Plan*)

The more you can make sure is discussed in advance of your admission to hospital for surgery/procedure to address your unique, potential needs, the better.

Anaesthesia

The preop assessment is a good time to discuss anaesthesia and pass on information re anesthesia and ME to your doctor/consultant, preop nurse and the anaesthetist.

Two resources linked below give information on many of the different issues to be aware of regarding anesthesia, surgery and ME.

- About Anaesthesia and ME from Jodi Bassett of the Hummingbirds' Foundation for ME here.

- Anaesthesia information for Myalgic Encephalomyelitis (ME) created by the Grace Charity for ME here (please see from page 6)

* Care Plan

A personal care plan may be useful for anyone being admitted to hospital for surgery or a procedure. The Sample Personal Care Plan can be copied/downloaded/printed and edited to suit you or the person with ME in your care. Organising it takes time, and it is important to remember to carry the care plan for any hospital admission including to ED (A&E).

Please see our draft Personal Care Plan which needs to be edited by you to exclude information that does not apply to you and to include information relevant to your care needs.

Tip: After drawing up a Personal Care Plan document it would be worthwhile having the document signed off by your doctor so that it has greater currency, i.e. get your doctor to certify the document.

 

Other Resources for a Hospital Admission

We have compiled tools to support people with ME during a hospital admission or attendance at other care settings, and for when being admitted for procedures/other reasons.

Included in our compilation: Hospital transfer/Stay Notes, Personal Care Plan, Care Sheets, 'My Needs' Template, and much more; please see further resources for a hospital admission via link here.

Important Notes re Potential Paralysis in Some People with ME

Paralysis is a terrifying symptom that has often been reported in feedback from people with 

Severe (ME) yet it is rarely referred to and has not been researched. 

Paralysis in ME means the patient cannot feel and cannot move and has no choice about it.
Paralysis in ME can take over part of the body or the whole body, i.e., partial, or full body paralysis.
Paralysis, a recognised part of ME, is generally ignored, downplayed, or treated as not real.

"I have been an in-patient four times in the last year, each time following a procedure which has nothing to do with ME but which of course impacts strongly on me, causing paralysis for a few hours. During the paralysis, I can hear but cannot speak or move any part of my body or open my eyes. 

 

Over a period of hours I regain movement but it takes days to be able to 'manage' even in a hospital bed" 

 

- Severe ME Patient

Please see more about Paralysis in ME here.

Severe ME

It is important to note that for people with Severe ME a hospital admission or surgery may be impossible or extremely difficult because of the severity of illness and associated symptoms and disabilities. 

Organising a hospital stay or surgery must be done carefully and with caution.

People with Severe Myalgic Encephalomyelitis require unique care due to the tendency for the illness to be exacerbated by everyday stimuli such as light, noise and movement.

They are often too ill to use a wheelchair or can only do so to a very limited degree. Many need to spend their time lying flat in silence and darkness to avoid deterioration.  Some are tube-fed, incontinent, unable to communicate, allergic to medications, and unable to move.  

For people with very Severe ME 'resting' implies 'complete incapacitation’ which means that inactivity is the only option. Those severely ill are often incapacitated because it is physically impossible for them to do anything else.  Lying down in a dark room in silence and with absolute zero sensory input, with absolute zero physical movement or cognitive activity. 

 

Please see more about Severe ME and Management of Severe ME 

• About Severe ME here 

• Management of Severe ME here

• The Gurney Guide for Severe ME Transportation here

• Supporting People with Severe ME in a Healthcare/Other Setting in the Safest Way here 

• Reasonable Adjustments for Severe ME in Hospital here

• Comunication Supports in Severe ME here

We have come across a podcast from the Royal College of Anaesthetists which focuses on ME and Anaesthesia (50 mins long). 

Dr Anton Kruge (25 years experience as an anaesthetist), Dr Charles Shepherd and Helen Baxter discuss ME and anaesthesia. In the episode called 'Anaesthesia on Air' Dr Anton Krige, RCoA Clinical Lead for ME, talks with Dr Charles Shepherd from the ME Association and Helen Baxter, a patient advocate for ME patients, about the College's latest patient information project ME and anaesthesia. They explore this poorly understood medical condition and the strategies that anaesthetists will find useful in managing these patients in the perioperative period. Please access the podcast here

'ME/CFS and Anaesthesia Guide' by the Royal College of Anaesthetists UK referred to in the podcast here 

There is a pdf download entitled 'ME/CFS and Anaesthesia' included in the above mentioned guide available here. 

We have highlighted the above pieces we came across via UK advocacy because we feel that they may be useful to someone. We want to stress that despite labels and illness names used in the pieces, we only use and advocate for the use of the ME label, and we call the illness we advocate for 'Myalgic Encephalomyelitis (ME)' as per the International Consensus Criteria and Primer. We recognise that others use the CFS or ME/CFS label.

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. 

Adrenaline Surges in M.E.

 

 

Assisting the M.E. Patient in Managing Relapses & Adrenaline Surges

What is an adrenaline surge and how does this affect M.E. patients?

"People with M.E. can sometimes operate significantly above their actual illness level for certain periods of time thanks to surges of adrenaline - albeit at the cost of severe and prolonged worsening of the illness afterward.

Adrenaline is often referred to as the 'fight or flight' hormone as it kicks into action in situations of potential danger. However, adrenaline also kicks in when the body is in physiological difficulty, which is very often what is happening to severe M.E. sufferers. Adrenaline surges make the heart pump faster and raise the blood pressure, forcing blood around the body with greater force to supply the muscles with more oxygen, so that they can make a greater effort. Surges of adrenaline increase the metabolism.

They also relax and dilate the airways so that more oxygen than usual can be taken in. Adrenaline surges can also decrease the amount of pain felt. As a result of all of these factors, adrenaline surges - while they last - have the ability to increase physical speed, strength and other physical abilities.

Unfortunately, when these bursts of adrenaline wear off - as they must - people with M.E. are left far more ill as a result for many days, weeks, months or even years of overexertion.

People with M.E. are harmed by adrenaline surges, both by the physiological stress to the body of the changes caused by adrenaline, and by the extra activity which adrenaline enables, which may be far beyond the body's normal limits so that such activity causes damage. For every short term 'gain' there is a far greater loss overall.

Surges of adrenaline can last hours, days, weeks or even months at a time.

These adrenaline surges are a bit like credit cards. They allow patients to do things that they could never otherwise do, or 'afford.' But the interest rate is extortionate, sky high, a killer."

~ The Hummingbirds' Foundation for ME

Jodi Bassett compiled the above information in her Hummingbirds' Foundation for ME website to:

• describe the characteristics and signs of adrenaline surges and relapses in ME, and
• explain how to manage adrenaline surges for the benefit of patients and carers, as well as for newly ill ME patients.

Managing Adrenaline Surges in ME

 

• Why do M.E. patients sometimes overexert themselves, considering the severe consequences?

• What signs may indicate a relapse or an adrenaline surge?

• What can you do to help?

Please see answers to the above questions and more about adrenaline surges here

Thanks to Jodi Bassett & the Hummingbirds' Foundation for M.E.

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. 

Supporting People with Severe ME in a Healthcare Setting in the Safest Way

    

  

We recently came across a 2004 piece by Greg Crowhurst which was published in the Nursing Standard (UK) in February 2005 (pgs 19, 21, 34-38). The information emphasises that there is a lack of medical education and awareness about severe ME and that it is misunderstood despite its seriousness.

The information is aimed at nursing and other healthcare staff; it could also be used in any health/social care setting as well as in a home/nursing home setting to educate carers and staff who meet a severe ME patient, to support the patient in the safest way possible.

We have pulled out relevant extracts which may be useful for someone with severe ME, please see those in images and via our link below. Key features and symptoms are presented along with possible service responses and treatment options.

The items could be printed out and added to your medical file/presented to healthcare providers and others.

Please see all printable information via the link here

Many thanks to Greg Crowhurst

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 in some instances.