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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. kaazoom

    UK National Archive releases formerly 'closed' file

    Valerie Eliot Smith, the ME patient that got this file released has issued an update. I have uploaded it here for those who are interested.
  2. kaazoom

    UK National Archive releases formerly 'closed' file

    The person who managed to get this information released is appealing to have much of the redacted content released too. She is a barrister who has ME. She has a twitter account @SnakeTempleGirl. Hopefully she will succeed where other have failed.
  3. kaazoom

    all gone neurological

    My symptoms have always been mostly neurological. I had the infectious start, but rarely have immune symptoms, I don't get constant sore throats. In fact i always used to suffer from lots of colds and sore troats before I became ill, but I never get them now, although I occasionally get a day...
  4. kaazoom

    Klonopin

    I am going to keep the higher dose of clonazepam for special occasions, assuming my body hasn't built up a perminent tolerance to the drug. The problem with trying other drugs is my doctor will only give me Citalopram which is a SSRI. It doesn't do anything and I am going to tell him I want...
  5. kaazoom

    Klonopin

    Someone pointed me to this thread after I talked about my recent experience with clonazepam. I was originally prescribed it for involuntary movements that started within the first 6 months of being ill. I was prescribed up to 1.5 a day on a as needed basis. I took 0.5mg at night as at that time...
  6. kaazoom

    Parkinson-like Freezing - Does Anyone Else Get This?

    One of the first symptoms I had was not being able to initiate movement. I would go to type on my computer keyboard, or to pick something up, but would freeze for a few seconds, the same happens with my speech I go to speak but cannot engage my mouth. I have other symptoms that can look like...
  7. kaazoom

    Parkinson-like Freezing - Does Anyone Else Get This?

    Yes, thats me! And I do recognise your nic. :Retro smile:
  8. kaazoom

    Parkinson-like Freezing - Does Anyone Else Get This?

    Does anyone else suffer from Parkinson-like freezing? I am not talking about being cold. I am talking about not being able to move, like your feet are glued to the floor. I have been getting this a lot other lately. I'll be walking and suddenly stop and cannot move for a few seconds. At other...
  9. kaazoom

    What are the long-term effects of CFS?

    Just for those who don't know what the joke is, here is the video in question. My apologies to those who have had this inflicted on them before! http://www.youtube.com/watch?v=3RwToJB2bAE Paul
  10. kaazoom

    What are the long-term effects of CFS?

    Don't mention the goldfish!!!!!.....Too late - I've had a relapse!
  11. kaazoom

    What are the long-term effects of CFS?

    I have had ME/CFS for four and a half years. I developed a movement disorder that I believe is a paroxysmal dyskinesia about five months after my illness started. The problem for people with ME/CFS, especially in the UK, is neurologists are quick to decide it is psychogenic even when there is no...
  12. kaazoom

    WPI Letter to Dr McClure ****

    I hope people like Simon Wesseley who has helped to have children seized from their parents under the mental health act get well and truly sued. The treatment of Ewan Proctor and others should not be forgotten. This video on YouTube contains an interview with Ewan, the way he was treated was...
  13. kaazoom

    anyone else have 'dragging feet'?

    I have gait problems. My legs are very stiff when I walk and I sometimes look as if I have Parkinson's Disease. My right foot also tends to drop. I have had a whole batch of tests including a couple of MRIs, Lumbar puncture, plus a EMG in a few muscles in my legs and feet, numerous blood tests...
  14. kaazoom

    Lightning Process to be Evaluated in Research Study on Children

    AfME have just replied on Facebook to a question asking whether they oppose the clinical trial of LP on children. This is what they have said: "Action for M.E. sees no reason to oppose this pilot study. As was made clear when it was announced, the research at this stage is simply a pilot...
  15. kaazoom

    two more weird symptoms

    I have had ME/CFS since December 2005. I started to notice problems with my handwriting in late 2008. I thought I might have Parkinson's Disease, because my gait often looks parkinson's-like and I sometimes have problems with initiating movement. But it appears these types of symptoms can be...