• 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.

Search results

  1. C

    Help for the bedbound and severe

    thanks for posting that trouble is they wont know anything about very severe m.e. and how do you begin to explain to people
  2. C

    Help for the bedbound and severe

    im sorry that happened to you, and thankyou for your sympathy :) I couldn't stop them bringing in different psychiatrists if they decided to do that...
  3. C

    Help for the bedbound and severe

    also how do you find a decent carer for very severe me?
  4. C

    Help for the bedbound and severe

    also if my mother dies im in trouble because I cant do things like apply benefits/ fill in forms, talk enough to benefit assessors. because of cognitive disability
  5. C

    Help for the bedbound and severe

    thanks for your sympathy :) I am in blackpool. my mother is a hoarder, fills her house with junk and never cleans it either. she used to live here and the house was a mess then and shes moved out but im obviously not in a position to fix it. if things break she wont get them fixed -...
  6. C

    Help for the bedbound and severe

    Its complicated because I have a mother who is mentally ill, who doesn't look after me, except filling in forms/applying for benefits and shopping and well.... I don't think I can say the rest. If I hadn't ended up bedridden I would have cut off contact with her altogether but I don't have a...
  7. C

    Help for the bedbound and severe

    Thankyou for replying :) the advocacy worker at the 25% group said shes too busy with other people to take me on. A consultant immunologist me specialist diagnosed me with M.E. a long time ago, hes now retired, probably dead by now. They didn't say I didn't have M.E. just that I was not...
  8. C

    Help for the bedbound and severe

    is there anyone willing/able to help someone with severe m.e. who has no friends or nice family left (only abusive family). social services think its psychiatric/ not leaving the house because reclusive because no visitors. how common is it for very severe m.e. to end up with no friends or...