• 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.

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  1. T

    New Novel with M.E. theme

    Hello. I have had M.E. for over twenty years, and have been writing for longer than that. I have had a blog about CFS/ME for the last six years where I have been writing about my experiences with the condition. I write a lot of stories, novels and poetry and published a novel two years ago...
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    Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

    I have just watched Unrest; a powerful, moving, important film. Blog post from my M.E. blog about the film here... http://thedamnchronicsituation.blogspot.ie/2018/05/unrest.html
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    Article International ME/CFS and FM Awareness Day Is On May 12, 2018

    Thanks for this; I have just seen Unrest and wrote a blog post on it here on my ME blog.... http://thedamnchronicsituation.blogspot.ie/2018/05/unrest.html
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    Lessons from ME/CFS: Finding Meaning in the Suffering

    Interesting you mention the idea that "everything happens for a reason", I, like you, don't really accept this and wrote a blog post on it here.... I have had ME for 16 years now, and have learned a certain amount about myself during this time, what I can and can't do, the kind of person that I...
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    A Hidden Life

    Thanks for your comment. Very sorry to hear about your cancer diagnosis, that´s a hard thing to have to deal with, on top of ME. It's sad that you have had to contract cancer for someone to take your medical situation seriously.
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    A Hidden Life

    Actually, FDR doesn't give Kramer the "stink eye", it is something else entirely! Just found it.
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    A Hidden Life

    There is a great Seinfeld episode where Kramer is given "the stink eye" by the Van Buren boys. (I think it also happens with FDR (Franklin Delano Romanowski :)) in another episode, while he's blowing out his birthday candles)
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    A Hidden Life

    Yes, exactly, I do feel that a lot of the time I am "acting" too. Though, in truth, that is probably true of a lot of people, healthy and well. We all have stuff going on under the surface that no-one else sees, though this is more true of us who have a chronic illness.
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    A Hidden Life

    Yes, I do that too, tailor the explanation according to the person and the situation. I have found that if you don't enter into a huge long epic listing of symptoms and treatments, then most people are fairly understanding or neutral. As I have said before, it's not because I have been attacked...
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    A Hidden Life

    First of all, I never said that Irish society is not open minded. ME is misunderstood by most people in Ireland, but that is not a specifically Irish problem, it is worldwide. To be honest I don't recognize the picture of the country that you paint. You may have had some bad experiences that...
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    A Hidden Life

    Thanks for your comment, I can identify with the bus experience, I'm sure a lot of us who appear healthy probably can, being taken for a healthy person when we are in fact really struggling. It's not easy. You sound like you have good friends, Samuela, who at least make an attempt to...
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    A Hidden Life

    Thanks for your comment, glad you can identify with it.
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    A Hidden Life

    I think that is a very good point, in truth most people, healthy or ill, keep vital parts of themselves back from everyone but their closest friends and family. It is nothing exceptional to be hiding something. There often does come a point though, when talking to people about what is really...
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    A Hidden Life

    Thanks for your comment, I think there are lots of us in a more or less similar situation.
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    A Hidden Life

    Yes, I have come closer to this attitude recently too, if I talk about ME it is important that I am accurate and exact, but if people choose to misinterpret the explanation, or misunderstand something, there is really nothing I can do but get on with my life. We have enough to be doing just to...
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    A Hidden Life

    One of the reasons that I don't talk much about the condition is that, when I hear other people going into great detail about their own ailments, I find it self indulgent and at times tedious. It is all too easy to become a bore about illness if you have a chronic condition like ME.
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    A Hidden Life

    I agree that I am lucky enough to be able to hide the illness. I can impersonate a healthy person for at least an hour or two at a time. I have been more ill, though, and during that time I just tended to avoid contact with people for the most part, explaining things about this condition was...
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    Breakspear Medical in the UK

    I was prescribed artesunate and immunovir. All info here... http://thedamnchronicsituation.blogspot.ie/2013/07/breakspear-3-live-and-in-person.html
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    Breakspear Medical in the UK

    An update on my blog on my treatment programme with Breakspear Clinic. http://thedamnchronicsituation.blogspot.ie/2013/08/breakspear-4-o2-and-co2.html
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    The Perrin Technique: Does it help?

    I wrote a couple of posts on my experience with Perrin on my blog.....here.. http://thedamnchronicsituation.blogspot.ie/2013/05/the-perrin-technique.html
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    Breakspear Medical in the UK

    An update on my blog on my continuing treatment and tests in the Breakspear Clinic. http://thedamnchronicsituation.blogspot.ie/2013/07/breakspear-3-live-and-in-person.html
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    Hyperthermia and IV infusions

    I have been recently seeing a doctor in the Breakspear clinic in the UK. She recommended for me a course of hyperthermia, and also IV infusions of vitamins, B12 and glutathione. Full details on my blog, here...
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    Breakspear Medical in the UK

    Yeah, interesting, you're not the only person to suggest the far infra red sauna. Have you tried any of these options, Maryb, or anyone else out there tried them? I'm trying to decide whether these treatment options are for me and have a bit of a knowledge deficit.
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    Hyperthermia and IV infusions

    I have been seeing a doctor in the Breakspear clinic in the UK for a few months now. She has recommended that I have a number of courses of treatment, including hyperthermia, and IV infusions of vitamins, glutathione and B12 to aid detoxification. Full details on my blog...
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    Breakspear Medical in the UK

    I have just had my second consultation with the doctor in the Breakspear clinic and have written about it here... http://thedamnchronicsituation.blogspot.ie/2013/06/breakspear-2-test-results-and-treatment.html The blog post talks about my test results and the suggested treatment options. Two...
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    Breakspear Medical in the UK

    Thanks for the feedback about this everyone. I wasn't really intending to do LDI in the first place, but if I had any doubts I certainly won't be doing it now. I've had all my test results back at this stage, and have a new appointment with Dr Munro next week to see about treatment options. I...
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    Patients to DHHS: Fix the Broken ME/CFS Case Definitions NOW!

    I agree that the current situation is a bit of a mess, but I also think it is necessary to proceed with caution. CFS is an unsatisfactory title, but ME is worse. The "E" refers to Encephalomyelitis, which is a very specific term that means "swelling of the brain and spinal cord". Has anyone here...
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    BREAKSPEAR CLINIC, UK

    I have recently started the process of having treatment in Breakspear clinic in the UK. I am only in the initial stages of the process, but would be interested to hear about other people's experiences. It would help me a lot in order to decide how I am going to proceed with a potentially very...
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    Breakspear Medical in the UK

    I have recently started a blog. The basic idea is to report on my experiences with treatment. I am dealing with Breakspear at the moment, and have a blog post on my initial interactions with them. http://thedamnchronicsituation.blogspot.ie/2013/05/the-breakspear-clinic-1.html
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    The Perrin Technique

    Yeah, there are a few threads that discuss it, but no dedicated thread, as far as I can see, which was what surprised me. They generally do make fairly large claims for their therapy. I was told that I should expect a full recovery within twelve to eighteen months. That, needless to say, did...