Severe ME is NOT the same as having a severe episode of ME.
Per the IC Primer: “Mild (meet criteria, significantly reduced activity level), Moderate (an approximate 50% reduction in pre-illness activity level), severe (mostly housebound), or very severe (mostly bedridden and needs help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour.”
“Severe ME constitutes a major challenge, not only for the patient and the family, but also for the doctor confronted with it, often for the first time. It requires from the doctor commitment, calmness, courage and compassion, indeed many of the qualities of the ideal doctor.” Dr. Nigel Speight (2020)
Severe ME Day
August 8th has been set aside as a day to recognize Severe ME, in honor of the late severe ME patient Sofia Mirza who died at the age of 32 as a result of detrimental medical care for myalgic encephalomyelitis. Read more HERE at MEadvocacy.org.
CORONAVIRUS This download document gives common sense advice about the Coronavirus. Information is from Dr. Nigel Speight, an ME doctor who is known for supporting the Severe ME patients in the UK.
25% M.E. Group - "We campaign to raise awareness of M.E and provide services to people affected by severe M.E. (Myalgic Encephalomyelitis)". (U.K.)
WEBPAGES ON SEVERE ME The Hummingbird's Foundation for M.E. has three severity scales for physical, cognitive, and symptoms HERE. - "Because physical and cognitive ability and symptom severity are often not equally affected in every patient, this scale is divided into three parts. A scale with more than one category should ensure greater accuracy and hopefully be more encouraging since there is a great likelihood that patients will score a bit higher in at least one category compared to the other two." Additional info on severity and ME deaths can be found HERE.
The World of One Room - "A personal story of a young girl growing into a young woman suffering with the severest form of this debilitating neuological illness. A message of hope and a belief in recovery with a plea for us not to forget ME - it's time the world woke." (U.K.)
A Life Hidden by Naomi Whittingham - "A Life Hidden is dedicated to those shut away from the world because of the intense suffering of sever ME (myalgic encephalomyelitis). This site is a collection of my advocacy work, and I hope that it will serve as a resource for anyone wishing to understand more about the illness." Words from a Hidden World - "A Life Hidden" blog
Articleswith several tips for living with severe ME including: meals, noise, traveling, wardrobe, etc.
BOOKS Greg Crowhurst has written books focusing on caring for Severe ME patients. These can be found on Amazon, Lulu, Stonebird, etc. These include:
Severe ME: Notes for Carers (paperback)
Caring for ME - A Pocket Book Course for Carer. Intro video HERE.
Issues of Noise, Light, Touch, Chemical & Movement Sensitivity in Severe/Very Severe ME that Carers Need to be Aware Of - Free pdf HERE.
Very Severe ME - Underlying Principles of Care - Free pdf HERE.
The Care Needs of People with Severe ME - Free pdf HERE.
A Girl Behind Dark Glasses - by Jessica Taylor-Bearman Jessica tells the tale of her battle against the M.E Monster. The severest form of a neuro immune disease called Myalgic Encephalomyelitis went to war with her at just 15 years old.
GIFT IDEAS Into the Light by Corina Duyn is an Artist Book-in-a-wooden-box. "Each loose sheet has a short reflection on life with chronic illness/disability, although its wisdoms are also applicable to many of life’s challenges." Beautiful unbound printed pictures. Much easier to handle than a book.
VISITOR LIST FOR DOOR HERE's a (printable) door poster with rules for visiting a severe ME patient, created by Sophie Connor.
SCIENCE There is very little science specific to the severe myalgic encephalomyelitis patient population. To see more research that applies to ME, go to our Published ME-ICC Studies Page.
The Effect of ME/CFS Severity on Cellular Bioenergetic Function by Tomas, Elson, Strassheim, Newton, and Walker “It is vital that people with different disease severities are included in ME/CFS* studies if we are to move forward with better understanding of ME/CFS pathophysiology. The inclusion of the two disease severity patient groups [moderately and severely affected ME/CFS patients] has allowed us to identify differences and similarities between those moderately and severely affected with the disease. The lack of association between disease severity and mitochondrial function shown here indicates that abnormalities in mitochondrial function are a feature of the disease irrespective of severity. The lower glycolytic functioning in the severely affected patient group that we have identified is also vital as it shows that these patients have a glycolytic impairment in addition to the mitochondrial impairment which may explain why these patients present with a more severe phenotype. Lower levels of both mitochondrial and glycolytic functioning may be caused by a hypometabolic state in ME/CFS which is linked to disease severity. This work has increased our understanding of cellular energy production abnormalities in ME/CFS and how this alters with disease severity.” *Canadian Consensus Criteria
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