Monday 8 August 2022

Severe ME Understanding and Remembrance Day August 8th 2022


Understanding Severe Myalgic Encephalomyelitis 


Sofia Mirza
Severe ME Remembrance Day is marked on Sofia's birthday which was on August 8th

-        August 8th is chosen as Severe ME Understanding and Remembrance Day because it is the birthday of Sofia Mirza, a severe ME patient, who died at aged 32 due to medical abuse and ignorance.


-        Severe ME is estimated to impact 25% of ME patients.



-        The Severe ME category includes those with Severe, Very Severe and Profound ME



-        Sufferers are isolated due to the severity of their symptoms. Leaving the bed, the bedroom and home to seek medical care proves to be extremely difficult and next to impossible because of the effects of disruption, of movement, noise, lights, smells and furthermore because of the being in an environment that is not equipped nor has understanding and knowledge about severe ME to be able to manage the patient.

-        ME and Very Severe ME constitute a major challenge for a patient given the symptoms and severity and lack of appropriate home care, healthcare, and management.


-        Severe ME and Very Severe ME constitute a major challenge for a carer given the symptoms and severity, the lack of guidelines, education, knowledge and supports.




Image by Greg Crowhurst


Below you will find various links to our blog posts about severe ME - a one stop place for anyone looking for educational and practical information about severe ME including important information about caring and supporting those with severe ME.


An overview of Severe and Very Severe ME


Image by Wendy Boutillier/Artz Studios

Symptoms in Severe ME


Image by Greg Crowhurst

Image by Greg Crowhurst

Paralysis in Severe ME



Management and advice about Severe Paediatric ME

Dr Nigel Speight (UK) offers a series of case reports of individual cases as a means of illustrating various points regarding clinical presentation, together with general principles of appropriate management.

Image by Wendy Boutillier/Artz Studios

See that information via link here



Image by Greg Crowhurst

Whitney Dafoe’s account of very severe ME can teach a lot about how someone with severe ME should be cared for: (we recognise that Whitney has family carers who care for Whitney in ways that other carers may not be able to, and that they have tried and tested treatments that not everyone has easy access to or might not suit everyone)


Useful Information for People Caring for Someone with Severe and Very Severe ME


Image from Innie Somniac

More about Caring for Severe ME



Image by Greg Crowhurst


Important Tools for hospital admission/care setting

Care Setting Tools include

·        Personal Care Plan

·        My Needs Statement

·        Consent To Treatment Statement & Form


Other useful Tools

·        International Consensus Primer (ICP)

·        DePaul Symptom & Severity, and PEM Questionnaire

·        Bells Disability Scale

·        Educational Film  - ‘Hospital Admission’

 ·          Care Sheets


More useful Tools

·        Emergency Room Info Sheet

·        Letter to a hospital or doctor/consultant’s office to avoid a possible psych referral/ward stay

·        Anesthesia Info for ME Patients

·        AHRQ Addendum 2016 Conclusion

·        ME Research Extracts and Videos about ME

Link to all the above information here

Image by Innie Somniac

More re Caring and Carers via this link


Image by Greg Crowhurst

Read about Severe ME awareness from around the world in this excellent August newsletter from ME International

 Many thanks to Greg, Wendy & Innie for your informative images. 

Thanks to Greg for your valuable insight to caring for those with severe ME.




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