severe

https://www.aquietstorm.me/ Was quiet impressed by this! Especially enjoyed Greta Granö’s collages of rest (and their accompanying poems).

Without one, Severe advocates are putting themselves at risk. It’s time for advocacy organizations to step up. https://thesicktimes.org/2025/04/04/an-international-emergency-task-force-is-urgently-needed-for-severe-long-covid-and-me-crisis-cases/ IMO, important article, shame it overstates...

Hi. I just wanted to share an essay my dad wrote that got included in a recent healthrising post. The part written by my dad is quoted below: I was very grateful he wrote it and thought it was really well done.

Abstract Objectives Primary objective: to determine the point prevalence and incidence rate of severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in children aged 5–16 years over 13 months. Secondary objectives: to describe the demographic features, symptoms, impact on activities...

Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research Model 25% ME Group Abstract Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who...

Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. The most severely ill patients may need total care. Yet, patients with severe or very...

Abstract One in four myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients are estimated to be severely affected by the disease, and these house-bound or bedbound patients are currently understudied. Here, we report a comprehensive examination of the symptoms and clinical...

Faith Newton Abstract Children with ME/CFS who are severely ill are bedbound and homebound, and oftentimes also wheelchair-dependent. Very seriously affected children are often too sick for doctor’s office visits, let alone school attendance. The most recent data estimate that 2–5% of children...

Full title: Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected Abstract People who are severely and very severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome...

Identification of differential genetic profiles in severe forms of fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis: A population-based genetic association study Ferran J. Garcia-Fructuoso, Jose Ignacio Lao-Villadoniga, Cristina Santos, Violant Poca-Dias, Joaquim...

Life-Threatening Malnutrition in Very Severe ME/CFS Helen Baxter, Nigel Speight, William Weir Healthcare (MDPI), Open access Abstract Very severe myalgic encephalomyelitis (ME), (also known as chronic fatigue syndrome) can lead to problems with nutrition and hydration. The reasons can be an...

I'm a bit late sharing this, since it was published on March 8, and I keep forgetting to post! But I really enjoyed this essay written by @Michelle : https://www.hippocampusmagazine.com/2021/03/salisbury-steak-day-by-michelle-strausbaugh/

https://www.mdpi.com/2227-9032/9/2/168

Severe ME: More Notes for Carers by Greg Crowhurst https://www.stonebird.co.uk/

https://www.investinme.org/20CNY/20CNY08adv.shtml

Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients https://www.mdpi.com/2227-9032/8/4/394

not peer reviewed https://www.preprints.org/manuscript/202007.0754/v1 (full free pdf download available at link)

https://www.mdpi.com/2227-9032/8/3/211 (This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)

" A day to remember everyone who is suffering or who has ever suffered from Severe and Very Severe Myalgic Encephalomyelitis. Severe ME Understanding & Remembrance Day : This day aims to bring public attention to the illness for the sake of all those presently suffering from Severe Myalgic...

full text download https://www.mdpi.com/2227-9032/8/3/197 eta: (This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)