Understanding Severe Myalgic Encephalomyelitis
(ME)
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| Sofia Mirza Severe ME Remembrance Day is marked on Sofia's birthday which was on August 8th |
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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.
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Severe
ME is estimated to impact 25% of ME patients.
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The
Severe ME category includes those with Severe, Very Severe and Profound ME
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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.
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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.
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| 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
https://meadvocatesireland.blogspot.com/2022/05/day-21-myalgic-encephalomyelitis.html
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| Image by Wendy Boutillier/Artz Studios |
Symptoms in Severe ME
https://meadvocatesireland.blogspot.com/2022/05/day-10-myalgic-encephalomyelitis-me.html
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| Image by Greg Crowhurst |
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| Image by Greg Crowhurst |
https://meadvocatesireland.blogspot.com/2022/05/day-15-myalgic-encephalomyelitis-me.html
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.
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| Image by Wendy Boutillier/Artz Studios |
See that information via link here
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| 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
https://meadvocatesireland.blogspot.com/2022/05/day-22-myalgic-encephalomyelitis.html
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| Image from Innie Somniac |
More about Caring for Severe ME
https://meadvocatesireland.blogspot.com/2022/05/day-19-myalgic-encephalomyelitis.html
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| 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
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| Image by Innie Somniac |
More re
Caring and Carers via this link
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| Image by Greg Crowhurst |
Read about Severe ME awareness from around the world in this excellent August newsletter from ME International
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