My brother with Severe ME has a bunch of cavities. He hasn't had a dental cleaning, x-rays, or fillings in around 5 years, since he became severely ill, and in that time has not had the energy to keep up with his dental hygiene. He's also on a lot of medications that cause dry mouth.
We...
Hello.
I am a FT caregiver for my daughter, who’s in her early 30s and has suffered from ME/CFS for four years (the past two years severe, and the past 9 months extremely severe). She got sick after a virus in 2019 and has been in a gradual decline since. She’s been housebound since the end of...
So I had an allergic reaction back in February and then had this awful, god awful, feeling. It was not PEM, but what essentially was happening was I would almost get these like adrenal rushes from my stomach. And it would cause me to feel super hyper, like I would be talking super fast and...
FINALLY, someone has addressed this very important issue in a publication:
Life-Threatening Malnutrition in Very Severe ME/CFS (Baxter, Speight, and Weir, 2021)
by Helen Baxter, Nigel Speight, and William Weir
https://www.mdpi.com/2227-9032/9/4/459/htm
Excerpt:
(spacing added for readability)...
Dialogues for a Neglected Illness is an amazing set of videos raising awareness about different aspects of ME.
The first video provides an introduction to ME:
https://www.dialogues-mecfs.co.uk/films/introduction/
dialogues for a neglected illness
https://forums.phoenixrising.me/attachments/62e930b7-d47a-442c-aa0a-86e5613537e6-jpeg.40691/
severemesevereme/cfsseverely ill
A new publication from Van Campen, Rowe, and Visser on the effect of sitting up in severe ME:
https://www.mdpi.com/2227-9032/8/4/394
Earlier this year they published a similar study on the effect of tilting the head in severe ME...
frans visser
https://forums.phoenixrising.me/attachments/sittingupinbed-jpeg.44034/
linda van campen
orthostatic intolerance
peter rowe
severemesevereme/cfsseverely ill
August 8th, 2019: Understanding and Remembrance Day for Severe ME
by Jody Smith
We in the ME/CFS community mark August 8th, 2019, on our calendars and in our hearts. On Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis, we seek to increase awareness about what our most...