Severe ME is NOT the same as having a severe episode of ME.
Per the ICC: “For a diagnosis of ME, symptom severity impact must result in a 50% or greater reduction in a patient's premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level), moderate (mostly housebound), severe (mostly bedridden) or very severe (totally bedridden and need 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.
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.
Severe ME Websites
Stonebird: The Experience of Severe ME by Linda & Greg Crowhurst (U.K.)
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.)
MDPI Healthcare: ME/CFS - the Severely and Very Severely Affected
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.)
MDPI Healthcare: ME/CFS - the Severely and Very Severely Affected
Videos and research papers assembled by Multidisciplinary Digital Publishing Institute (MDPI), addressing severe ME/CFS.
"Not all studies recognize ME as per the ICC." ~ MEI
"Not all studies recognize ME as per the ICC." ~ MEI
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.
Severe ME: CONTEMPLATE PARALYSIS IF YOU CAN by Stonebird (U.K.)
10 Sep 2020 - A chilling description of what paralysis feels like.
Severe ME Day 8th August, 2018: Understanding & Awareness by MEadvocacy.org - 2018 (U.S.)
Severe ME: CONTEMPLATE PARALYSIS IF YOU CAN by Stonebird (U.K.)
10 Sep 2020 - A chilling description of what paralysis feels like.
Severe ME Day 8th August, 2018: Understanding & Awareness by MEadvocacy.org - 2018 (U.S.)
The Severe ME Bedbound Activity Masterlist by Sarah Stanton
"Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. With that in mind, here is a masterlist of activities pitched at a level severe ME patients can manage."
"Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. With that in mind, here is a masterlist of activities pitched at a level severe ME patients can manage."
Additional ME Organizations can be found on our Orgs Page(s).
Children
Blogs and Writings
Channelopathy: an important issue for those with Myalgic Encephalomyelitis by Greg & Linda Crowhurst - A discussion on paralysis. (U.K.)
Severe ME Day: A Call to Act with Truth and Integrity by Greg Crowhurst - 08 Aug 2019 (U.K.)
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
Articles with several tips for living with severe ME including: meals, noise, traveling, wardrobe, etc.
Severe ME Patients Speak Out on Paradigm Change website - 2015 (U.S.)
Severe ME: I had to fight the people supposed to help me on ME Australia website - 2015 (Aus.)
Poem My Bed by Rosalynde Lemarchand
Severe ME Day: A Call to Act with Truth and Integrity by Greg Crowhurst - 08 Aug 2019 (U.K.)
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
Articles with several tips for living with severe ME including: meals, noise, traveling, wardrobe, etc.
Severe ME Patients Speak Out on Paradigm Change website - 2015 (U.S.)
Severe ME: I had to fight the people supposed to help me on ME Australia website - 2015 (Aus.)
Poem My Bed by Rosalynde Lemarchand
Books
Greg Crowhurst has written books focusing on caring for Severe ME patients. These can be found on Amazon, Lulu, Stonebird, etc. These include:
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.
- Severe ME: Notes for Carers (paperback)
- Severe ME: MORE Notes for Carers HERE
- 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.
Videos
Why Severe ME Relapses Are Horrific - Video from HFME describing Severe ME
Severe M.E My New View - Video of a Severe ME patient (TRIGGER: slightly wobbly camera work with voice over.)
Art in Suffering by Greg Crowhurst - A silent video about the suffering of Severe ME. You are not alone.
Paralysed by Stonebird - Has background music
Videos by Dialogues for a Neglected Illness (U.K.) including: Severe and Very Severe ME/CFS (14:44), Symptoms and Management of Very Severe ME/CFS (19:01), and Hospital Admission (15:38).
My Tug Of War - Severe M.E Awareness Day - 08 Aug 2019 (2:19)
Severe M.E My New View - Video of a Severe ME patient (TRIGGER: slightly wobbly camera work with voice over.)
Art in Suffering by Greg Crowhurst - A silent video about the suffering of Severe ME. You are not alone.
Paralysed by Stonebird - Has background music
Videos by Dialogues for a Neglected Illness (U.K.) including: Severe and Very Severe ME/CFS (14:44), Symptoms and Management of Very Severe ME/CFS (19:01), and Hospital Admission (15:38).
My Tug Of War - Severe M.E Awareness Day - 08 Aug 2019 (2:19)
Gift Ideas
Energy-Saving Self Care Cards
"Self-care suggestions like "go to the movies" or "walk the dog" are not helpful if you can't actually do them because you're chronically ill or in pain. -- I've designed a unique set of self care cards with chronically ill people in mind. These cards are customised for your needs, and are written by someone who's been sick and often homebound or bedridden for over 20 years."
"Self-care suggestions like "go to the movies" or "walk the dog" are not helpful if you can't actually do them because you're chronically ill or in pain. -- I've designed a unique set of self care cards with chronically ill people in mind. These cards are customised for your needs, and are written by someone who's been sick and often homebound or bedridden for over 20 years."
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.
Life-Threatening Malnutrition in Very Severe ME/CFS
by Baxter, Speight, and Weir (UK) 14 April 2021
Important information for Severe ME patients ... even though they use ME/CFS as well as ME in the paper.
"...There can often be a significant delay in implementing [this], due to professional opinion, allowing the patient to become severely malnourished. Healthcare professionals may fail to recognize that the problems are a direct consequence of very severe ME, preferring to postulate psychological theories rather than addressing the primary clinical need. We present five case reports in which delay in instigating tube feeding led to severe malnutrition of a life-threatening degree. This case study aims to alert healthcare professionals to these realities."
The Effect of ME/CFS Severity on Cellular Bioenergetic Function
by Tomas, Elson, Strassheim, Newton, and Walker (UK & S.Africa) 10 April 2020
“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
by Baxter, Speight, and Weir (UK) 14 April 2021
Important information for Severe ME patients ... even though they use ME/CFS as well as ME in the paper.
"...There can often be a significant delay in implementing [this], due to professional opinion, allowing the patient to become severely malnourished. Healthcare professionals may fail to recognize that the problems are a direct consequence of very severe ME, preferring to postulate psychological theories rather than addressing the primary clinical need. We present five case reports in which delay in instigating tube feeding led to severe malnutrition of a life-threatening degree. This case study aims to alert healthcare professionals to these realities."
The Effect of ME/CFS Severity on Cellular Bioenergetic Function
by Tomas, Elson, Strassheim, Newton, and Walker (UK & S.Africa) 10 April 2020
“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
