Important Notes about Severe ME

for Healthcare Providers & others

These notes on Severe and Very Severe ME are designed to help patients, carers, family members, and advocates when engaging with health and social care professionals or anyone unfamiliar with severe ME.

1. Risk Assessment Notes by ME Advocates Ireland (MEAI)

https://docs.google.com/document/d/1nuOZjrDOWFqW4x8EXBdxTEpTplRy0oqdY6WoOffOz0I/edit?usp=sharing

2. Supporting people with Severe ME in a Hospital or other Health/social care Setting

Information Pack by ME Advocates Ireland (MEAI)

https://drive.google.com/file/d/1PKBebkaY2Q-hznjJE7fFW_2j2JLzJK1w/view?usp=sharing

3. Nutritional Needs in Very Severe ME (collated by ME Advocates Ireland -MEAI) 

https://docs.google.com/document/d/1h0TNFGdWR8Z3KY11b9RG_picN-Ia40gM/edit?usp=sharing&ouid=104868253219054845549&rtpof=true&sd=true

4. Educational Resources for Clinicians and others (collated by ME Advocates Ireland -MEAI)

https://meadvocatesireland.blogspot.com/2026/02/educational-resources-for-clinicians.html

5. Issues of Noise, Light, Touch, Chemical & Movement Sensitivity in Severe/ Very Severe ME by Greg Crowhurst

https://stonebird.co.uk/hypersensitivity.pdf

6. Paralysis Care Plan Template for Paralysis/Crash Phase Management

This template is for Severe ME patients who have experienced paralysis during severe post-exertion episodes. It helps communicate the extent of paralysis, pain, or other symptoms to healthcare professionals.

You can personalise the Paralysis Care Plan with your doctor—or, if you are a carer, with the patient’s healthcare professional—and keep it in medical records or bring it during hospital visits.

        https://drive.google.com/file/d/1ON2a3WbGsQjFoekuZB1Iyv3JyARultCL/view

7. Hospital Transfer/Stay Notes Template and sample by ME Advocates Ireland (MEAI)

Short handy notes with all the information about you that anyone transferring you to hospital or managing you in hospital can read quickly. The notes tell a lot about your illness and your needs in a busy hospital/other care setting environment.

Hospital Transfer/Hospital Stay Notes Template:

https://drive.google.com/file/d/1yEKHws9f4ojdQrHjlceJSWn4hYbc0aPw/view

Hospital Transfer/Hospital Stay Notes Sample:

https://docs.google.com/document/d/1rzKOGMbdskOvJ24BJ-QZgL2bU43uu583/edit

8. Personal Care Plan of Individual with ME attending Hospital/other Care Setting by ME Advocates Ireland (MEAI)

Personal Care Plan

·        would outline the severe ME patient’s illness and needs,

·        would outline the difficulties the patient has being in the unfamiliar environment of a hospital where there are many potential ‘dangers’ to their health,

·        would warn medics of the other difficulties that might come about,

Sample Personal Care Plan:

https://drive.google.com/file/d/1pUABs5HOzPsH_6IBdAa6jm_ZOwN5L-1y/view

9. ‘My Needs Statement’ Template

Based on the HSE’s 'National Guidelines on Accessible Health & Social Care Services' (2014) the 'My Needs Statement' template can be edited to suit you and used during a hospital admission etc when faced with the problem of how to explain ME & ‘My Needs’ to healthcare staff.

My Needs Statement Template:

https://docs.google.com/document/d/1NqB2KMss-wIT9-WJ69Xhn_Wi6vLTLoWH/edit?rtpof=true&sd=true

10. EMERGENCY RESOURCES FOR ME AND LONG COVID PATIENTS (compiled by the Severe ME Advocacy Group and Dr Alexis Gilbert MBBS Bsc)

https://docs.google.com/document/d/1S2P5M57LUf-Pdkza0fO-UpshJbXYLG1q6CaV1ga7bPw/edit?tab=t.0

11. Severe/Very Severe ME Useful Resources by mum and carer Galen Warden

https://www.galenwarden.com/resources