ME Awareness 2024 Campaign
ME/CFS and Anaesthesia Factsheet and Podcast
This detailed new information booklet, from the Royal College of Anaesthetists, is a must for anybody with ME who anticipates they may have to have surgery. To make it ME friendly it is downloadable. Please see the 25% ME Group ME Awareness 2024 webpage at https://25megroup.org/me-awareness-2024/
This excellent resource has been created because people with ME had been approaching the Royal College of Anaesthetists about the lack of information around ME and anaesthesia. (25% ME Group and the ME association had also been contacted by members asking for information about anaesthesia.) Based on these requests from patients, a focus group of people with lived experience of ME and having an anaesthetic was set up by the Royal College of Anaesthetists and the ME Association to gather patients’ experiences. The focus group was led by Dr Anton Krige, a consultant in Intensive Care and anaesthesia. All severities of ME, including very severe ME, were represented at the focus group and were able to input into this resource.
The factsheet:
¨ gives a brief description of what ME is and provides links to further information.
¨ serves to take the person with ME through their surgical journey from general considerations, planning and preparing for surgery, on the day of the surgery, through to discharge.
¨ uses a combination of question and answers and quotes from people with lived experience. The questions posed may cover things you might have in mind or serve as prompts for different questions you might have depending on your personal situation.
This document would be an excellent resource to take to hospital with you when you are having early discussions with the surgical/anaesthesia team. Please do give this document to anyone you know who has ME and may need surgery and to any health care professionals who may encounter ME patients, to enable them to better understand ME and anaesthesia and to be able to pass the factsheet on to any of their ME patients who might be having surgery.
Following on from the ME and Anaesthesia Factsheet, a podcast was made by the Royal College of Anaesthetists featuring Consultant Anaesthetist, Dr Krige, Dr Charles Shepherd from the ME Association and Helen Baxter, advocacy worker at 25% ME Group. Go to the 25% ME Group ME Awareness 2024 page to listen to this or read the transcript. This is a wide-ranging discussion about ME and anaesthesia and includes an in depth discussion about the reasonable adjustments required by people with ME when attending hospital appointments or having an inpatient stay.
You could send a link to the factsheet and the podcast to the anaesthesia department of your local hospital to further disseminate and raise awareness of this important topic. Look at the 25% ME Group ME Awareness 2024 page for a pro-forma email. Please remember hospital departments are very busy and you may not receive a reply or acknowledgement of your email. Please do not repeatedly send the email.
ME and Anaesthesia Factsheet from the Royal College Of Anaesthetists-1
Transcript of Podcast on ME and Anaesthesia
A link to the podcast https://audioboom.com/posts/8472161-the-perioperative-management-of-patients-with-me-and-long-covid
This is a Pro forma email to send the Anaesthesia factsheet and Podcast links to the anaesthetics department of your local hospital.
Preferably send the email directly to the anaesthesia department; if you can’t find a direct email address you could send it to the Patient Advice Liaison Service (PALS) at your local hospital and ask them to forward it to the anaesthetics department. Please remember hospital departments are very busy and you may not receive a reply or acknowledgement of your email. Please do not repeatedly send the email.
Good morning,
I have severe ME and live in the local area. I wanted to bring to your attention two excellent resources from The Royal College of Anaesthetists.
As there was very little information on ME and anaesthesia, The Royal College of Anaesthetists working with The ME Association and people with lived experience of having ME and an anaesthetic, have co-produced a factsheet. See link ME/CFS and anaesthesia (myalgic encephalomyelitis or encephalopathy/chronic fatigue syndrome) | The Royal College of Anaesthetists (rcoa.ac.uk)
As part of the ‘Anaesthetics on Air’ series, The Royal College of Anaesthetists has also produced a podcast on ME and Anaesthesia. https://audioboom.com/posts/8472161-the-perioperative-management-of-patients-with-me-and-long-covid
I hope these resources assist you in your clinical practice when you treat a person with ME.
Yours sincerely,
[insert your name]
A recent 25% ME Group paper documents the rising tide of research and related policy and guidance pertinent to the diagnosis and care of patients with myalgic encephalomyelitis, cumulatively representing a sea change occurring over the last ten years.
Call for people to take part in a ME research study
The ME Association is funding a study led by Prof Sarah Tyson of University of Manchester (who also has ME) to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in ME services.
Thanks to everybody who took the time and energy to complete the PROMS questionnaire before Easter.
The third questionnaire is now ready for people to complete. The research team are keen to get input from people with severe ME.
This is the link https://www.qualtrics.manchester.ac.uk/jfe/form/SV_4GBQxvdf3mgdW1E
Scottish Government engagement session
I am writing on behalf of the Scottish Government’s National Care Service Division, to inform you of two engagement sessions that we are running later in April/early May, and to ask if you could cascade the information to anyone who might be interested in taking part.
Scottish Government officials will be hosting two sessions to find out more about the difficulties that people suffering from ME face when accessing social care support services. The sessions are due to take place on 24 April and 1 May, from 14:00-15:00.
The first session will focus on your experiences of accessing social care and the assessment process. During the second session, which will be held the following week, we will be asking how you think the process could be improved.
Both sessions will last no longer than 1 hour each, and you are free to join for as little or as long as you can. They will both be run on Microsoft Teams. So that we can hear from everyone taking part, spaces will be limited to 8 people. If you’re interested in taking part, please email nationalcareservice@gov.scot to register your interest by 19 April.
I would be very grateful if you could forward this to anyone you think might be interested in joining. I would also be very happy to have a chat beforehand if you have any questions.
Many thanks,
Colin
Colin McKnight (He/Him) | Advocacy, Access and Models of Care Unit | Directorate for Social Care and NCS Development | Scottish Government | 5 Atlantic Quay | Glasgow | G2 8LU
This podcast from the Royal College of Anaesthetists focuses on ME and Anaesthesia. Dr Anton Kruge, Dr Charles Shepherd and Helen Baxter discuss ME and anaesthesia https://audioboom.com/posts/8472161-the-perioperative-management-of-patients-with-me-and-long-covid
Transcript of Podcast on Anaesthesia and ME
The Team at the Royal College of Anaesthetists have kindly done a transcript of the podcast on Anaesthesia and ME with Dr Anton Krige, Consultant Anaesthetist, Dr Charles Shephard from the MEA and Helen Baxter, advocacy worker at 25% ME Group. https://www.rcoa.ac.uk/events-professional-development/education-professional-development/rcoa-podcasts/perioperative-management-patients-me-long-covid
Call for people to take part in a ME research study
The ME Association is funding a study led by Prof Sarah Tyson of University of Manchester (who also has ME) to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in ME services.
Thanks to everybody who took the time and energy to complete the TIMES questionnaire before Christmas.
The second questionnaire, (called the Post Activity Symptom Scale, PASS) to measure people’s PEM symptoms is now ready for testing. The research team are keen to get input from people with severe ME.
This is the link https://www.qualtrics.manchester.ac.uk/jfe/form/SV_cvaa1nmfhJVTflc
This questionnaire is shorter and simpler to complete then the TIMES one. It can be done in ‘chunks’ to enable pacing. It is fine to have someone to help you complete it. If you would prefer a paper copy or to ‘do’ the questionnaire by phone. That is fine. Just contact Sarah on sarah.tyson@manchester.ac.uk to arrange this.
The closing date for the survey is 29th March 2024.