• 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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    Dr Downing (clinics in York and London)

    Thanks Esther, xrunner and Sasha. xrunner, can I ask what has helped you so dramatically? Sasha, I plan to look at Dr Enlander's site. An American friend of mine who lives in Berlin is a patient of his - he travels to Germany too. But I am completely bed bound and live up north so London...
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    Dr Downing (clinics in York and London)

    Thanks for replying. Yes, my question does sound pretty crazy in context doesn't it?! I just gave up on what was on offer outside the NHS (and inside it, largely, except symptom control) after everything failed for me or made me worse. But I read about all the drugs and therapies which...
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    Dr Downing (clinics in York and London)

    Has anybody here been a patient of Dr Damien Downing? He has clinics in York and London, and is president of the British Society for Ecological Medicine. I think he works along similar lines as Dr Myhill. If anyone has any experiences with his treatment, whether good or bad, I'd be grateful to...
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    How safe (or not) is tilt table testing in severe ME/CFS?

    To my absolute delight, the cardiologist and specialist nurse have agreed to visit me to assess me at home on the NHS. Can't quite believe my luck!
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    How safe (or not) is tilt table testing in severe ME/CFS?

    Hi. Thanks everyone. Yes, a major concern in my case is just the travelling etc rather than the tilt table alone. My GP visited me today. Unfortunately her blood pressure monitor broke whilst I was standing up, but she measured my pulse and it was very high - dramatically increased on standing...
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    How safe (or not) is tilt table testing in severe ME/CFS?

    Hi everyone, Thanks to you all for your replies. Sorry I haven't been able to write as my eyes and hands are bad at the moment. I've been thinking about it, and yes, I think it would be best if I could be diagnosed just by standing for a short time. I only have to stand for a minute or two for...
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    How safe (or not) is tilt table testing in severe ME/CFS?

    Hi, Does anyone know whether Tilt Table tests are recommended/safe for people with severe ME/CFS? My GP thinks I have POTS. I have severe ME and am bed bound, and am trying to weigh up whether to try getting transported to hospital for a tilt table test. Obviously I can't get a proper...
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    New book, "Severe ME/CFS: A Guide to Living", by EC (severely affected PWME)

    I've just looked at the website for this book. It states that they're selling it at cost price, and neither the author or AYME will make any money from it.
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    XMRV (Spoof) short story

    Adam, I've just come across this and it's hilarious! Thanks for giving me a good laugh today! Amy
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    WPI UK XMRV testing/study

    Thanks TGOP. I have already checked my spam, but that is a good point to make. I did have an email from Dr Judy confirming that I'm in the study. It does seem very random as to who's had email from PSI and who hasn't. Just going to wait now for my region to be announced, as ukxmrv says above...
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    WPI UK XMRV testing/study

    Thanks, Countrygirl. I will stop worrying! And check back for updates.
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    WPI UK XMRV testing/study

    Are those of you who've just had emails in London? I ask as I believe (from a facebook post I've seen) that they're doing London first. I still haven't had an email (but I'm up north). I thought this was fine but now you're worrying me - eeeek!
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    WPI UK XMRV testing/study

    Hi ukxmrv, Thanks for that. I will try the email again. And thanks for sharing the other info just now. I too am very interested in the answers to those questions. Best, Amy
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    WPI UK XMRV testing/study

    Thanks very much for this, ukxmrv. I've just tried sending an email to the address given, but it's been returned by the mail delivery system saying there's an "unknown address error". Would you mind checking that the address is correct please? Thanks Amy
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    WPI UK XMRV testing/study

    Thanks for sharing this, fingers! Sounds like it's a case of staying patient. Amy
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    WPI UK XMRV testing/study

    Thanks fingers, that would be great! Re phoning PSI, does anyone have their number? Is there a UK number? I will wait til you hopefully hear back from JM. Amy
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    WPI UK XMRV testing/study

    I'm also waiting to hear back from the phlebotomy company. I sent Jan a message earlier today as she had already given me Ed's email address (so it may be me she's referring to above - if so, thanks Jan!). I'd emailed him last week and had no reply. I have been wondering whether to contact the...
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    anyone know about using oxygen from a cylinder?

    Thanks for the information and advice, dreambirdie. This is really interesting. I also have chemical sensitivity problems, and it hadn't occurred to me that oxygen could also help with this. I'm definitely going to ask my GP to let me try it.
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    anyone know about using oxygen from a cylinder?

    Does anyone have any experience of or information about using oxygen for ME/CFS? I have severe ME/CFS, and am bedridden (apart from some brief jaunts to the sofa on occasion!). I have bad orthostatic intolerance. My GP has provisionally diagnosed me with POTS, after measuring my pulse and...