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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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Search results

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    Rituximab Phase III - Negative result

    There were objective measures, but it's unclear if they were negative as well, or if they were referring to only the questionaires. https://clinicaltrials.gov/ct2/show/NCT02229942 But i'm not sure if it's possible to exclude placebo effects completely. Like this post states, objective measures...
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    Rituximab Phase III - Negative result

    Phase 2&3 results don't have to contradict each other. The placebo response in the new study could have been high. ME/CFS placebo responses were low in the past, but there wasn't much to be optimistic about. Patients had high expectations for this treatment.
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    Coverage of PACE/CBT criticism on Dutch TV-show (Eenvandaag)

    I have added english subtitles. You can select them from the youtube settings. I will check it for mistakes tomorrow.
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    Coverage of PACE/CBT criticism on Dutch TV-show (Eenvandaag)

    Overall very positive media coverage.
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    What causes lack of emotion?

    Do people with depression also feel apathy in their dreams? I feel normal emotions during my dreams, but instantly after waking up everything feels dull again.
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    What causes lack of emotion?

    I feel little in general. Sometimes my life feels like watching a movie on a screen, rather than being part of it. It probably has to do with my way of coping with the illness. When getting ill i started to relativize things, this is normal. The problem is, after 10+ years of being ill, you...
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    NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

    Too tired to read it all now, but when the RC of Psychiatrists disagrees, you know it's good news.
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    The Research Council of Norway invites ME-patients to propose research projects

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    Lady Gaga to release documentary on chronic illness

    Meanwhile at the therapists office. Therapist: When reading through your medical record I noticed that many of your personality traits are risk factors for developing fybromyalgia. Patient: Could you give an example? Therapist: You don't seem to express your emotions. Pushing through when you...
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    Jim Faas comments on 'renowned' PACE trial

    Side note, this is a quote from Van der Meer, about his CFS hypothesis: (Rough translation) Source: https://www.volkskrant.nl/archief/chronische-zoektocht~a3250965/ I think a patient with objective lactic acid increase like @Mark Vink would like to have a word with him?
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    Jim Faas comments on 'renowned' PACE trial

    Don't allow them to change the subject, just stick to the CBT stuff. Even if the Norwegian trials would be biased, that would be no excuse for the PACE/CBT research to be biased as well.
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    Support ME/CFS research by buying video games (Humble Bundle)

    From Reddit: More information about Humble Bundle: https://en.wikipedia.org/wiki/Humble_Bundle https://en.wikipedia.org/wiki/List_of_Humble_Bundles Charities you can donate to: Open medicine foundation Solve ME/CFS Initiative Action for ME ME Research UK More?
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    Diseases the placebo effect works for, and ones it doesn't work for (it's to do with dopamine)

    They mean the placebo response of the 'control' intervention like supportive listening or stretching exercises, right? Or the natural course of the no-treatment group? If it's the former, how they know these treatments are placebo treatments? And if it's a placebo, how do they know the other...
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    (an Irish national radio station) Frustrating interview on ME with paediatrician

    http://cdn.radiocms.net/media/001/archive/000084/20170911_11_XxasL7Lo2T.mp3 File > save as
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    The role of high expectations of self and social desirability in emotional processing in IBS

    If they talk about "poor", then can they please clarify what "good" emotional processing looks like? Because this seems to be one of those subjects where the patient is always wrong. I went to a MUPS center for my CFS and I experienced it all. Patient expresses much emotion > therapist thinks...
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    The role of high expectations of self and social desirability in emotional processing in IBS

    During my childhood I had something which, if I would have pursued treatment for it, probably would have been diagnosed as IBS. These days I rarely notice it anymore. But if I notice it, it's usually at the same time as when I'm feeling uncomfortable. Physically (e.g. when I'm cold) but...
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    How to measure level of exortion?

    For me: if the feeling of fatigue stays constant throughout the day, I know I'm still within my limits. If it increases during the evening (even the "nice" kind of fatigue like wanting to go to bed earlier), it's usually followed by waking up the next morning feeling like I have run a marathon...
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    Plea to colleagues by doctor felled by ME

    I don't see why questioning the validity of this story, or asking for proof, would be considered rude or offending. No one is questioning his ME, they are questioning the context. From being a doctor who treats CFS patients, to becoming one with the stereotypical symptoms, to trying lots of...
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    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    With all the anecdotes being posted, I will add mine as well then. During a better period I was able to exercise regularly and eventually I managed to participate in an endurance sport event. Although fatigue was a bit less during this period, other symptoms remained the same. (Despite an...
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    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    The dutch CBT is similar to the GET used in GETSET. Also with a walking schedule. In my opinion it's just two different names for the same treatment.
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    CFS prevalence is grossly overestimated using Oxford criteria compared to CDC (Fukuda) criteria

    That could be interpreted as "some patients feel more fatigue because they pay more attention to it". I hypothesized a physiological change why some patients feel extra fatigue, on top of a biological illness. Personally I don't see that as psychobabbler domain, some years ago I came across...
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    Is it possible to get your life back? Has anyone here done it?

    My sibling recovered 100% after meeting CDC criteria. But he started recovering in his teens. Research has shown that adolescents recover more often than adults. To answer your question: we don't know what causes recovery. So we also don't know your chances of recovery.
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    CFS prevalence is grossly overestimated using Oxford criteria compared to CDC (Fukuda) criteria

    Personally, I don't rule out the option that CFS = physical problem + central sensitization. CBT/GET creates a strict daily schedule, which reduces the focus on symptoms. But if that would be the case, then the PACE style CBT/GET would be the wrong treatment. If someone tells me I'm...
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    CFS prevalence is grossly overestimated using Oxford criteria compared to CDC (Fukuda) criteria

    Both numbers seem way too high, compared to other research and to my own experience. I used to go to a reasonably sized high school. One time I had a conversation with the school director and he said they never had a CFS patient before. (Out of +- 10.000 students) Doctors also don't seem to be...
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    Trudie Chalder - 17July 2017 - Roehampton Child Psychopathology

    They: "Well, the way I always explain it to my patients... Is by using what we call the 'biopsychosocial model'. We think it's important to make a distinction between predisposing, precipitating and perpetuating factors. This doesn't mean it's all in your head, like some people think, haha...
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    Jim Faas comments on 'renowned' PACE trial

    @Valentijn they moved to amsterdam.
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    ME Association provide new research grant to Dr Keith Geraghty

    Not sure if this is related to the research hypothesis, but something I would find interesting to know more about: Let's say, a patient is following a CBT treatment, and reports an increase in symptoms to the therapist. If I understand the BPS model correctly, there are now two possible...
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    Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet

    The worst part about that graded exposure stuff is that the therapists are taught to reassure the patient, and to emphasize progress. Even if there is no progress (in case of GET). So the therapist is constantly telling you things like: "that wasn't as bad as expected, was it?" "look how much...
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    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    Is there any news about the progress of this report?