Anaesthesia and M.E.

Introduction

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

Whether or not you have a formal diagnosis, 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 North Carolina/Ohio ME & FM Support Group: here

* 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: Care Sheet, '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 

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 only and call the illness we advocate for 'Myalgic Encephalomyelitis (ME)' and use no other alternative name, i.e. ME as per the International Consensus Criteria and Primer. We recognise that others use the 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.