Severe ME – ME International

Svær ME

Severe ME is NOT the same as having a severe episode of ME.

Per the IC Primer (page 7):

“For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level. 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. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately. Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and still be more active than a sedentary person.”

“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)

Dr. David Bell’s CFIDS Disability Scale – The Doctor’s Guide to Chronic Fatigue Syndrome – Understanding, Treating, and Living with CFIDS (1994); Chapter 9 “The Measurement of Disability,” pages 122-4

From the Hummingbirds’ Foundation for M.E. – HFME.org

“For very severely affected M.E. sufferers there is virtually no ‘safe’ level of physical or mental activity, orthostatic stress or sensory input; no level which does not produce a worsening of symptoms, and perhaps also contribute to disease progression. Even the most basic actions – speaking a few words, being exposed to moderate light or noise for a few minutes, turning over in bed, having hair or body washed in bed by a carer or chewing and swallowing food – cause severe and extended symptom exacerbations in such patients. It is not uncommon to hear of very severely affected sufferers who are unable to bathe themselves (or even be bathed by a carer) more often than once a week, or even once every few weeks, or even less. Some sufferers cannot chew or swallow food any longer and need to be tube fed. Many patients with severe M.E. are no longer able to toilet themselves, and so on. Either sufferers are just too ill to do these things at all, or they cannot tolerate the very long and severe relapses that come after such activities.

For people with severe M.E. even the smallest movement, thought, touch, light, noise or period upright can make their already very severe symptoms far worse. Thus few illnesses demand such isolation and loss of quality of life as severe M.E.

Very often people with very severe M.E. can barely communicate, or even tolerate the presence of another person. This is what makes M.E. such a cruel disease and such an isolating disease. The illness can cause an unrelenting level of disability, suffering and isolation that is just unimaginable to anyone not familiar with very severe M.E.”

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 HER at MEadvocacy.org.

This 54 second video from member Carolin Berger in Germany quickly highlights the issues with Severe ME. 08 August 2022
Trigger warning: video has ticking clock sounds with bell chimes at end.
auf Deutsch

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.

Severe ME Websites

Stonebird: The Experience of Severe ME by Linda & Greg Crowhurst (U.K.)

The Experience of Paralysis in Severe ME
Severe ME: CONTEMPLATE PARALYSIS IF YOU CAN (blog)
10 Sep 2020 – A chilling description of what paralysis feels like.

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 HER. – “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 HER.

Toileting in the Bed by Galen Warden – 08 September 2022 – A guide to preparing for and cleaning up a bowel movement in the bed when someone cannot sit on a toilet or commode. MEI ~ Galen’s article is frank and very informative with a downloadable PDF.

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 master list of activities pitched at a level severe ME patients can manage.”

See our Mortality page which references: cancer, cardiac, malnutrition, research and case studies.

Additional ME Organizations can be found on our ME-ICC Orgs Page.

Children

Severe ME in Children by Dr. Nigel Speight – July 2020 article – Case studies offer insight into best treatment approaches for children with ME. Includes experience with immunoglobulin therapies that improved outcomes.

ME in Childhood by Dr. Nigel Speight – 2012 article.

Published Papers

There is very little science specific to the severe myalgic encephalomyelitis patient population. To see more research that applies to ME, go to our ME-ICC forskning Page.

Severe and Very Severe ME/CFS in Norway: Symptom Burden and Access to Care
by Sommerfelt, Schei & Angelsen (Norway) 13 February 2023
“It is worrying that more than a third of all severe and very severe ME/CFS patients in the present study had disease onset before 20 years of age. … Our main findings were an extensive, long-lasting, and extremely incapacitating burden of symptoms among patients with severe and very severe ME/CFS. Among very severe ME/CFS patients, this burden and the extensive lack of functional capacity were so extensive that in effect any part of normal life participation was precluded.”

Figure 5 is from this report. Note that VERY SEVERE patients can do the following for LESS THAN once or twice a year: Go for a short walk, Cook a simple meal, Leave the house, Have a shower, Get up and get dressed, Wash their hair, and Visit others or receive visitors. ~MEI

(Aug ’22) This link is a Special Issue of Healthcare concerning housebound and bedbound Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients from MDPI (Multidisciplinary Digital Publishing Institute) Journal and includes several papers about Severe ME. — While the label ME/CFS is used, the content indicates this information is also applicable to ME.
“Not all studies recognize ME as per the ICC.” ~ MEI

Ensuring the Voice of the Very Severely Affected ME/CFS Patient is Heard in Research – A Research Model
by Helen Baxter (UK) 08 July 2022
“By making the necessary reasonable adjustments, such as direct outreach and the option to complete the questionnaire by telephone or texting, very severely affected patients were enabled to participate and provided invaluable contributions. This study aimed to act as a model for future researchers.”

Back to the Future? Immunoglobulin Therapy for ME/CFS
by Brownlie and Speight (UK) 12 November 2021
“We conclude that: (1) there is a strong case for this area of research to be revived; (2) pending further research, clinicians would be justified in offering a course of IgG to selected ME/CFS patients at the more severe end of the spectrum.”

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.”

Dental Care of the Homebound Patient with ME/CFS (pdf). A highlighted version is provided HERE. Original source HER.
by Evan Spivack, DDS (US) 31 July 2020
“Overall, care for the homebound and bedbound population with ME/CFS issues has been under-addressed in the literature to date and there has been little consideration of the oral health needs of this population. Evaluation, diagnosis and treatment of dental concerns may be hindered by many of the diverse symptoms of ME/CFS. The present paper utilizes the International Consensus Criteria (ICC) in discussing treatment considerations for the most severely affected patients with ME/CFS, both in oral evaluation and active care. While no specific dental pathology is linked to ME/CFS, proper care for the patient so affected must take into account the disorder’s symptoms and severity.”
It may be beneficial to provide this report to your dentist prior to your next treatment ~MEI.

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

Housebound versus nonhousebound patients with ME and CFS
by Pendergrast, Brown, Sunnquist, Jantke, Newston, Strand and Jason (US, UK & Norway) 28 April 2016
“Consistent with previous findings, nearly 25% of participants in this study reported being too ill to leave their homes. Based on previous epidemiological literature, it can be estimated that approximately 250,000 people are housebound due to ME and CFS in the United States. This housebound group consistently demonstrated significant impairment in functionality and amplified symptomatology compared to individuals who were not housebound. The housebound group’s significantly increased symptoms across all domains supports patient narratives, accounts written by severely ill patients’ families, and postings on various patient advocacy websites such as Action for ME, ME Association, and The 25% M.E. Group. These results indicated that housebound patients consistently experience more frequent and more severe symptoms than their nonhousebound counterparts.”

Blogs & Writings

Channelopathy: an important issue for those with ME 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.)

Severe ME Patients Speak Out – “For many reasons – because they deserve it, because but for the grace of God go we, because the biomarkers we need to find are naturally going to be the most obvious in the most severe patients – we need to be focusing more attention on these sickest of the sick. … And to be demanding that others pay attention as well.” 2015 (U.S.)

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

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:

Severe ME: Notes for Carers (paperback) HER
Severe ME: MORE Notes for Carers HER
Caring for ME – A Pocket Book Course for Carer. Intro video HER.
Issues of Noise, Light, Touch, Chemical & Movement Sensitivity in Severe/Very Severe ME that Carers Need to be Aware Of – Free pdf HER.
Very Severe ME – Underlying Principles of Care – Free pdf HER.
The Care Needs of People with Severe ME – Free pdf HER.

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

Trailer for Voices from the Shadows (2:59) – 06 February 2012
“The trailer for ‘Voices from the Shadows’, winner of the Mill Valley International Documentary Audience award – bears witness to the tragic consequences of psychiatric prejudice and medical ignorance about one of the most prevalent illness of the 21st Century. A film by Josh Biggs and Natalie Boulton with music by David Poore. www.voicesfromtheshadowsfilm.co.uk“

Preventing Avoidable Malnutrition in Severe ME by Helen Baxter of the 25% ME Group (12:09) – 30 January 2023 – Video discusses malnutrition in Severe ME (UK focus).

Why Severe ME Relapses Are Horrific (4:39) – 15 June 2012 – Video from HFME describing Severe ME

Severe M.E My New View – Video of a Severe ME patient (2:55) – 29 March 2015 – (Trigger Warning: slightly wobbly camera work with voice over.)

Art in Suffering by Greg Crowhurst (4:53) – 07 August 2017 – A silent video about the suffering of Severe ME. You are not alone.

Paralysed by Stonebird (2:13) – 17 December 2015 – 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 (2:19) – 08 August 2019 – For those with sensitivities, this video is a still image and voice over.

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.”

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.

Visit List for Door

HERE’s a (printable) door poster with rules for visiting a severe ME patient, created by Soph.