severe me/cfs

Bateman Horne Center Facebook post: https://bit.ly/3Yvek6W In recognition of National Family Caregivers Month, we're spotlighting essential resources for those supporting loved ones with ME/CFS, Long COVID and other infection-associated chronic conditions (IACCs). Today, we’re excited to...

Five pages of posts have been moved from George Monbiot on ME/CFS, PACE, BPS and Long Covid As background: Some of these posts consider the question of whether current assisted feeding policy in the UK prevents some interventions for people who have decision-making capacity and do not have...

I'm interested to know what people with severe (and very severe) ME/CFS and their carers have found useful with respect to preventing negative physical consequences of prolonged immobility. Some of the negative physical consequences I am thinking of, other than deconditioning/muscle wasting...

Now published - link ***************** Preprint https://www.medrxiv.org/content/10.1101/2024.09.26.24314417v1 A Network Medicine Approach to Investigating ME/CFS Pathogenesis in Severely Ill Patients: A Pilot Study Li-Yuan Hung, Chan-Shuo Wu, Chia-Jung Chang, Peng Li, Kimberly Hicks, Becky...

Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206 (preprint) @Jonathan Edwards Abstract: In the United Kingdom, a small but steady stream of people diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)...

Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study Alexander Peter Royston; Sarah Burge; Ilaria Idini; Amberly Brigden; Katharine Claire Pike OBJECTIVES Severe myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) in...

A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence Silje Helen Krabbe; Wenche Schrøder Bjorbækmo; Anne Marit Mengshoel; Unni Sveen; Karen Synne Groven In this article...

Investigating the Human Intestinal DNA Virome and Predicting Disease-Associated Virus–Host Interactions in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS Hsieh, Shen-Yuan; Savva, George M.; Telatin, Andrea; Tiwari, Sumeet K.; Tariq, Mohammad A.; Newberry, Fiona; Seton...

"Caring for people with ME/CFS who are bedbound" (2023) 8-page fact sheet from Emerge Australia https://emerge.org.au/wp-content/uploads/2023/04/caringforpeoplewithmecfswhoarebedbound.pdf

Moderation note: Abstract and link to the English version are in this later post - link ****** Yesterday the Danish Clinic Mehlsen by professor and psychologist Peter la Cour, PhD and Susanne la Cour, GP published a report based on home visits and interviews with 19 severe ME patients and...

Big article on ME/CFS in the influential German magazine Der Spiegel. It tells the story of Milena Hermisson a young patient and advocate with very severe ME/CFS. Her family has played an important role in the European ME Coalition (EMEC). Man kann sein Leben verlieren, ohne zu sterben...