very severe

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.

"Failings in the care of patients with Very Severe ME" by Dr Nigel Speight https://meglobalchronicle.wordpress.com/2024/03/12/failings-in-the-care-of-patients-with-very-severe-me-vsme/ A shocking new article by Dr Nigel Speight who helps many desperate young people with ME and their families...

as a very rough tldr, for anybody wondering, of my very rough and probably wrong understanding of it, it works via a rituximab-like mechanism, except against ige. it also affects basophils and mast cells. it is used for allergy-like / histamine-like conditions. even nasal polyps. side-effects...

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...

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...

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

I think it would be useful for all of us, and perhaps for the NICE committee members, to gather together resources about severe and very severe ME. This could include research and patients stories that illustrate good and bad practice in care for the very severely affected.