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    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.

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  1. J

    Feedback wanted on letter to Consultant

    Some good ideas there :) Slight problem with "stock replies" , but nvm Sadly, I totally get what you're saying. But then I think : if the same thing happens repeatedly and I never speak up about it, then isn't it my own stupid fault? I mean, "Take it lying down and hope for better luck...
  2. J

    Feedback wanted on letter to Consultant

    My sister has been able to attend some consultations with me, but she lives 130 miles away, works full-time and has a large family who depend on her. She has been of some help, but that's not a complete solution. For one thing, Doctors have a habit of asking surprising questions (things one...
  3. J

    Feedback wanted on letter to Consultant

    Hmm. My first thought was that you saying that I could run into prejudice against Autistic people. Which might be true but on further reflection your choice of quote suggests otherwise. Of course, it's so eminently sensible to preface an important act of commication with an admission to having...
  4. J

    Feedback wanted on letter to Consultant

    Sorry for being so long-winded, but as you can see, I'm trying to address a rather complex set of underlying issues in that letter, and i'm really nervous of ballsing this up. As I hoped would be clear from the letter itself., the intention is to get this, not to supplement, so much as to...
  5. J

    Feedback wanted on letter to Consultant

    OK, gonna quote myself, explain why I included the following parts, and ask for better suggestions for achieveing same objective. I do agree that the 2nd para is cumbersome. Again I'm attempting to preclude repetition of former problems. Not seeking to get answers in advance, but to ensure...
  6. J

    Feedback wanted on letter to Consultant

    I always write to my GP nowadays, and she reponds verbally. Communication between us has improved markedly, since I adopted this approach. She suggested that I write to the neurologist in advance of my appointment, which I did. I had mixed results here. The neurolgist insisted that I repeat all...
  7. J

    Feedback wanted on letter to Consultant

    PS yeah, I know i put #1 twice over but the text editor isn't working for me, so cannot correct :(
  8. J

    Feedback wanted on letter to Consultant

    Hi :) As I stated in my introduction thread, I've had an "urgent" referral to see a neurosurgeon in the UK (NHS. Thus "urgent" means in about 4 weeks's time), presumably regarding a cyst on my pituitary gland. My neurologist has said she thought this cyst is responsible for all my CFS...