• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

severe me

  1. R

    Respite care needed

    Hi lovely people, I'm posting on behalf of a friend of mine who has severe ME and is bedbound (I have LC myself but at a moderate level). They are in need of some respite care in the London area as both they and their family (who are their carers) are badly in need of a break. Does anyone know...
  2. rpapen77

    Has anyone gotten Silver Diamine Fluoride for dental cavities?

    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...
  3. L

    Safe Cell Phone

    Has anyone who is severe found a cell phone that they can tolerate? Member Samuel needs a phone but he has severe photophobia, sensitivity to flicker, and general neuro intolerance to the devices he has interacted with. Has anyone else here with photosensitivity due to very severe ME found a...
  4. Pyrrhus

    ME/CFS Levels of Severity

    How do you know where you fall on the ME/CFS Severity Scale? There are different ways of classifying how severe one's ME symptoms are. Some of them are easier than others to use. @Hip does a great job of explaining these different ways of classifying the severity of ME below: The above is...
  5. Pyrrhus

    August 8: Severe ME Understanding and Remembrance Day

    Today is Severe ME Understanding and Remembrance Day. In addition to Rachel's excellent piece on relationships, intimacy, and Very Severe ME, there are a few other notable pieces that have been shared this year: Underexposed, within four walls: A photography exhibition about Severe ME...
  6. Phoenix Rising Articles

    Article Very Severe ME: Are Intimate Relationships Possible?

    Very Severe ME: Are Intimate Relationships Possible? On August 8th our ME community honours Severe ME Understanding and Remembrance Day, this year and every year. Rachel M. shares her thoughts on what it's like living with Very Severe ME … By Rachel M. Hello. I’m Rachel from Queensland...
  7. Pyrrhus

    Healthcare Journal dedicates an entire issue to Severe ME

    The Journal Healthcare has dedicated an entire issue to the topic of severe ME: https://www.mdpi.com/journal/healthcare/special_issues/me_cfs_issue
  8. Pyrrhus

    Life-Threatening Malnutrition in Very Severe ME/CFS (Baxter, Speight, and Weir, 2021)

    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)...
  9. Pyrrhus

    Dialogues for a Neglected Illness

    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/
  10. Pyrrhus

    Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis... (Van Campen et al. 2020)

    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...
  11. Jody

    August 8th, 2019: Understanding and Remembrance Day for Severe ME

    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...
  12. Hip

    The Mild, Moderate, Severe and Very Severe Levels of ME/CFS

    Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) can vary greatly in its severity: mild is the starting point, next comes moderate, then severe. And for extreme cases, there is the very severe category. These levels of severity are most easily understood in terms of what activities...