Severe and Very Severe Myalgic Encephalomyelitis (ME)

A summary of important Resources on Severe and Very Severe Myalgic Encephalomyelitis (ME), including important posts on Caring for those with Severe/Very Severe ME 

Image by Wendy Boutilier/Artz Studios/GAME

It is hard for anyone to understand the horrors of living with Myalgic Encephalomyelitis (ME). Finding a way to enable the ME - unaware  to get a glimpse of the conversation they need to enter into is vital  unless living with or alongside ME.

Image by MEAwarenessPics

Part One includes List of some Common Symptoms

Image by Noreen Murphy of ME Advocates Ireland

                Part Two includes

           Please click here for link to   Individualized Care Plan (Sample)

Part Three includes: - 

• Notes for Carers of people with Severe ME from Greg Crowhurst

Image by Greg Crowhurst

• Supporting Someone with Severe/Very Severe ME Care Sheets by Greg Crowhurst

Images x 3 by Greg Crowhurst

‘CARING FOR SOMEONE DIAGNOSED WITH SEVERE ME : GREAT WISDOM AND SKILL ARE REQUIRED'- GC

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Further Information

• Useful information and educational pieces that can be easily shared with medics, family, friends, general public, etc, which includes a very useful Booklet from Invest in ME Research that gives an overview of how ME affects a community; easy to carry Information Cards for medical appointments, etc; a link to the film 'Voices from the Shadows', about Severe/Very Severe ME available online and on DVD; link to the International Consensus Criteria (ICC) for Myalgic Encephalomyelitis (ME). 

         

                                     See link to all of the above helpful information here

• The 25% Severe ME Group (UK) was set up to support all who have the severe form of ME and those who care for them. This includes people who are housebound, bedbound and dependent on help for physical functions - people who may be tube fed, who suffer from great pain and multi-sensitivities along with other horrific disabling symptoms. Severe ME Remembrance Day, set up by the 25% Severe ME Group, aims to bring public attention to the illness for the sake of all those presently suffering from Severe/Very Severe Myalgic Encephalomyelitis and to remember all those who have died from ME - ' a day to honour the strength of spirit of all those who have endured  and continue to endure decades of suffering profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.'

Image from the 25% Severe ME Group by Wendy Boutilier/Artz Studios

See link to 25% Severe ME Group website -  here

See link to 25% Severe ME Group Facebook page - here

• Physios for ME (UK) recently produced seven slides aimed to educate physiotherapists and any other Allied Health Professional about the basics of ME and the current issues around their profession. Those detailed slides and other information from Physios for ME (UK) here .

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Many thanks to Greg Crowhurst for much of the information above. 

Thanks to the 25% Severe ME Group, Invest in ME Research Charity, Wendy Boutillier & others who have worked tirelessly for decades to educate & raise awareness of the WHO classified neurological illness Myalgic Encephalomyelitis (ME) G93.3