Severe 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)

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.


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.)
Paralysis 

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.

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

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 Research Page.

(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 HERE.
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) HERE
  • 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 (4:39) – Video from HFME describing Severe ME 

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

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

Paralysed by Stonebird (2:13) – 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

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.

Visitor List for Door

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