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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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    Bart's Therapy: CBT but not as we know it

    Maryb, I was being ironic.
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    Bart's Therapy: CBT but not as we know it

    The point is that regardless of the pace manual or anything else, the psychologists at Bart's are helping now. They are helping people cope. When I get down to the gym I'll let you know. :winking:
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    Bart's Therapy: CBT but not as we know it

    Thank you Dolphin. I read all your links some time ago. RE the Bart's website and 'recovery'. Hmmm. I can tell you that I have recovered my quality of life. I have recovered a sense of equilibrium and a sufficient mental energy that I can at some stage very soon contribute something again...
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    The Quantified Self

    The ideas sound great but perhaps we have such screwed up bodies, normal markers may not actually reflect what they would in healthy people. For example sweating might be inhibited or excessive in dysautonomia and heart rate can whack up 50 or 60 beats just from standing still in POTS! I guess...
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    Bart's Therapy: CBT but not as we know it

    That sounds terrible Valentijn. What a crappy therapist. So sorry to hear about your OI too. That can be very disabling. But RustyJ is wrong about you being a victim. Don't ever take that one on board. You've always got the choice to walk away (or wheel yourself away if you choose). If your...
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    The Quantified Self

    Fascinating, Charityfundraiser. Thanks for posting. Good video too. This area is going to explode now that IT companies are really getting involved. This stuff could probably really help us, with the right markers. A sophisticated system might well take the aggro out of pacing for example...
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    Bart's Therapy: CBT but not as we know it

    I'd agree taniaaus1 that quality may well vary. My therapy, and it was more than CBT, happened to worthwhile and that's what I wanted to explain. This forum is so anti psychology, you're unlikely to get a balanced view of whats going on in the UK. I know the Sussex NHS clinic did a patient...
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    Bart's Therapy: CBT but not as we know it

    Hi Jace Thanks, I'm glad it helped me too. Perhaps you havent read the beginning of this thread? I have first hand experience of what is practiced at Barts. http://forums.phoenixrising.me/showthread.php?16830-Bart-s-Therapy-CBT-but-not-as-we-know-it& That's the link of my experience. Very...
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    Bart's Therapy: CBT but not as we know it

    I'd definitely like to see immune function test. There is a battery of tests done so you get some immune function details but not the really in depth stuff. That would be good. Pain and sleep medication is offered. Andy maybe some for OI depending on what its caused by. Eventually I'll get to...
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    "Quotable quotes on psychosocial CBT in ME/CFS" - compiled by Tate Mitchell

    Hmmm. Well I tend to go with first hand experience, rather than what somebody said, particularly as so many people are so selective about what they hear. And as I've talked a lot about pacing with the therapist I've worked with I'll stick with that for now. When the leaflet for the CFS/ME...
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    Bart's Therapy: CBT but not as we know it

    We will get there Enid. And I'm glad you've found help along the way too. That makes a big difference. :thumbs up:
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    Bart's Therapy: CBT but not as we know it

    I dont really understand what you're saying Enid. Sorry.
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    Bart's Therapy: CBT but not as we know it

    I'm not suggesting any of that. I think we've established that the therapy I'm doing at Barts is very useful. In the end the 20 Billion pounds worth of cuts is going to deprive patients of the type of care I've received. And it is good care. I do want to see more biomedical research and an...
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    "Quotable quotes on psychosocial CBT in ME/CFS" - compiled by Tate Mitchell

    Thanks for posting Dolphin. All the quotes you have given are from five - ten years ago or from another country. I am saying things are changing at least at Barts. Things are improving in the way that we want them to improve. You'll actually see from the link below that the therapy at...
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    Bart's Therapy: CBT but not as we know it

    Hi Dolphin, Ok now I understand, that puts things in context. I also understand the sore throats. I have never heard your ME story but I would be very interested to hear it and how it all began, if you're willing to share. I wonder if we should have a new thread 'Tell your story. How was...
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    Bart's Therapy: CBT but not as we know it

    Ah Dolphin, you think they were trying to convince me? Having had ME for five years I certainly know the difference between a flare up and a cold. Or are you trying to convince me otherwise? :winking:
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    Bart's Therapy: CBT but not as we know it

    Thanks Dasiymay The therapist didnt say why the treatment wouldn't cure me. We didnt talk about her views, we stuck strictly to my stuff and not hers. I've no idea what she thought but in hind sight, I don't think it matters. I have quite clear views on CFS and when we talked about them she...
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    Bart's Therapy: CBT but not as we know it

    Thanks Ocean, I really appreciate your kind words. And you're so right, adapting to the person who is the new us, is so difficult. Living the new life that we dont want to live can be near impossible. I found one of the useful ideas from Acceptance and Commitment therapy is that when we are...
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    Bart's Therapy: CBT but not as we know it

    Thanks for the link Boule de Feu but apologies, there's a lot here and couldnt quite read through all this at the mo. I think its difficult to try to define things in order to describe them to others particularly when they're so complex. For me just 'therapy' is probably most accurate and...
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    Bart's Therapy: CBT but not as we know it

    Thanks Esther. Have to say it didnt really feel like advice i was getting. It was far more about the therapist asking questions so that I was able to work stuff through and come to my own insight. That way, I can continue to ask my own questions and gain insight when the therapist is no...
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    Bart's Therapy: CBT but not as we know it

    Thanks SOC, it is encouraging! The trouble is in the UK, we're not very good at communicating what's going on. Had I described this in 2015, people would have gone on making assumptions about what kind of CBT was being used, when in reality what was going on in clinic was something rather...
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    BACME 2012 Conference Agenda

    SOC I answered your questions more fully in this thread http://forums.phoenixrising.me/showthread.php?16830-Bart-s-Therapy-CBT-but-not-as-we-know-it& My fluff-speak (love that term! :cheeky grin:) not theirs. Medical attention (from the medic). A few years ago I was advised to drink 2...
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    Bart's Therapy: CBT but not as we know it

    Part III Here's how my life has changed, or not... Psychological/Emotional The reintegration of mindfulness has been life changing because it is altering the way I relate to myself. I'm more benevolent toward myself and struggle less, expect less of myself I suppose. I'm also less re-active...
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    Bart's Therapy: CBT but not as we know it

    Part II Barts Therapy: CBT but not as we know it.... i) CBT focused on how I could do things differently in order to avoid exacerbating fatigue. For me that meant learning to do less, resting more strategically and focusing on really looking after myself, essentially it's about being kind to...
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    Bart's Therapy: CBT but not as we know it

    This thread is in response Firestormm/s request for me to share my experience of therapy at Bart's and to SOC's very specific questions about it on another thread. Link http://forums.phoenixrising.me/showthread.php?16737-BACME-2012-Conference-Agenda& I've shoved this in the news section...
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    Earlier version of PACE treatment manuals, trial identifier, etc.

    Well I've just about completed therapy at Barts and there was none of this.
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    New Immune-System Sensor May Speed Up, Slash Cost of Detecting Disease

    This is really something Waverunner. Depending on how in-depth its' analysis is, it has the potential to revolutionize the way research is conducted into our illness. Could pick up the fluctuations more easily for sure. And cheap too. There's a guy at Stanford who is adapting a blood sugar...
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    Article: ME/CFS Recovery/Recovering Stories Requested

    I'd be really interested in recovery/relapse stories too. I think they have the potential to offer v useful information as well.
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    Exercise Alters Epigenetics

    Thanks for posting charityfundraiser. Fascinating that epigentics, which were once thought fixed, have now been shown to be dynamic as suggested in this article. That leaves room for intervention! And ramakentesh, I think that prior high levels of intensive exercise decades earlier are possibly...
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    Heat Shock Proteins - Impaired Response to Oxidative Stress

    Good explanation Marco! Aprilk, you do come up with some interesting papers. I wonder how expression of hsps in the gut impact on expression elsewhere in the body. Justy, I'm interested in your translocator protein thing. Is there another thread on this? Are you saying that ethanol (or...