• 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. F

    Bathing is hard!

    Keep hair short or tie it up and don't wash so often. Wash the smelly bits at the sink or with a bowl of water sitting in bed. Wet wipes are good standby There is a product called no rinse, liquid soap and shampoo you just towel,off, they also do large wipes for a bed bath You can get help to...
  2. F

    Are you totally convinced you have CFS?

    Ibs as comorbidity? In which case it exists as well as. Or is it a symptom, exists as part of, or cause of, or is caused by same thing Can't rule it out anyway. Drives me mad
  3. F

    Bad news to the MEA from NICE: no review considered necessary

    Please share widely Local groups can register as stakeholder for nice consultation on guideline review, it's easy, fill in form at nice website be kwik it ends in few days. Then if reveiwed l8r, can contribute in that consultation. Cbt/get not effective treatment, may help manage, but may harm...
  4. F

    CFS Recovery Group London - ANS Rewire/Gupta Programme/Optimum Health Clinic

    And it's possible that ppl are misdiagnosed, so until we have testing for the cured we will never know what they recovered from!
  5. F

    CFS Recovery Group London - ANS Rewire/Gupta Programme/Optimum Health Clinic

    There is a difference between the common meaning of recovery- getting back to 'normal' (i.e. recovered), and that used in AA and other 12 steps groups- managing the condition long term, never say recovered. I think this accounts for the confusion, tho I'm sure the Gupta ppl will talk about...
  6. F

    MAIMES: Would you like a Public Enquiry into the lack of care and treatment for people with M.E?

    If a patient, or group of patients (hate that word!), harmed by get were to sue the 'treatment/care' provider and won, would that be evidence? If so a no win/no fee or pro bono class action would be a good idea. Don't know how strict the criteria or burden of proof wld b