• 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. kafkaboots

    Pushing for Rituximab Pilots in the UK

    Yes - Charles Shepherd did say before he left that the subject of Rituximab would be coming up while he was in America, but I can't remember in what context. He is not answering questions on FB until he gets back.
  2. kafkaboots

    Pushing for Rituximab Pilots in the UK

    Thanks UXMR - you've answered my unspoken (unformulated?) question - if people in the UK want to see progress should we push through the ME Association (and maybe IiME?) or do we need to join forces in some other way. I think your advice is spot on - Charles Shepherd first! Thanks.
  3. kafkaboots

    Pushing for Rituximab Pilots in the UK

    Hi Snow Leopard - thanks, yes. I was wondering specifically about pilots. And in the UK especially, what qualified people we might have on our side. We have regional ME centres and London departments whose psychosocial model relies largely on the absence of effective medical treatment. I think...
  4. kafkaboots

    Pushing for Rituximab Pilots in the UK

    I am new enough here to realise you may have dealt with this enough - I did find a relevant thread but I've lost it again. I had a real breakthrough with my (young) GP yesterday, armed with the latest IiME newsletter and the NS piece on Rituximab. I could almost see the possibility of a paradigm...
  5. kafkaboots

    Paying for medical reports in the UK

    Thanks Jace; that is all very helpful. I found out last week that it was one of my GPs who went to great lengths to have Sophia Mirza sectioned several years before she died of complications arising from ME. Very sobering. Because I suffer from depression as well as ME I feel acutely aware that...
  6. kafkaboots

    Paying for medical reports in the UK

    Hi Justy - did you pay to see the specialist or just pay for the letters? I did see the Sussex ME service years ago but they don't encourage rereferrals. I wondered if there were private specialist worth seeing just to have some decent documentation on my side. Feels odd to have been ill for 20...
  7. kafkaboots

    Paying for medical reports in the UK

    Hi, I wonder if anyone in the UK has paid for a medical report on their condition. And any worthwhile tests? Would this be a way to be forearmed with regard to ESA etc. Thanks for any advice