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    UK House of Lords/ House of Commons - relevant people and questions

    I suspect the government of extracting the michael - 3,000! Women's Health Strategy: Call for Evidence - GOV.UK (www.gov.uk) It took them 6 months to analyse responses from 100,000 individuals, and 436 organisations and individuals with expertise in the area. Why the inordinate delay...
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    and that's because it's based on the fact that the only thing stopping you from improving is your fear of returning symptoms and deconditioning. "The Glass Cage" 1994.
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Yep :banghead: I remember stating in group after week one, that planning and filling in the diary (whilst actually trying to work reduced hours and fit in the all homework)on top of daily life events outside of my control and which weren't manageable, plus the additional 2hr per week session...
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    Health-related quality of life in patients with chronic fatigue syndrome An international study, 2001, Buchwald, Sharpe, Hardt et al

    On the Science Direct website this is under a page in 2022 Type-D Personality - an overview | ScienceDirect Topics Health Psychology Keen Seong Liew, ... David S. Krantz, in Comprehensive Clinical Psychology (Second Edition), 2022 8.13.2.5.5 Type D Personality “Type D personality (or...
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    Health-related quality of life in patients with chronic fatigue syndrome An international study, 2001, Buchwald, Sharpe, Hardt et al

    This paper was included in a Special Issue of the Journal of Psychosomatic Research in August 2001 on the topic of Sleep and fatigue. Journal of Psychosomatic Research | Special Issue-Sleep and Fatigue | ScienceDirect.com by Elsevier Among several papers was this one: 2001 – Increased vital...
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    cont'd 4. Access to work, totally separate from clinic and available to all, help with changes in the working environment, such as ground floor office, a quiet area for rest periods, taxis to travel to work, as I was unable to drive by that stage. I had that all lined up and arranged...
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    1. Activity pacing (like the APT arm of the PACE trial found to have no beneficial effect on it's own). In 2011 Bath was offering activity pacing and Mindfulness CBT. Part of the method for the patient to establish their own baseline was to keep an activity diary. In it each day is sectioned...
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    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Thanks @Peter Trewhitt that's even better. Prevarication definitely. Either way this thread is now evidence of Cochrane's contribution towards causation of harm. This is from something I've already prepared: 1. Human rights (who.int) For those unfamiliar with this, my I introduce you to...
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    United Kingdom: Kings College London; South London and Maudsley NHS Trust

    Almost 3 1/2 years ago. [My bolding in the narrative] First Do No Harm – What you need to know about the Cumberlege Review | Bevan Brittan LLP " Recommendations and actions for improvement In the introduction and overview to the report, comment is made that while the review team were asked to...
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    'Believe ME' | BBC Horizon, 27 June 1988

    Excellent, :thumbup:! I've been looking for this for years!
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    True, but for the future, it is very important to now record the issue of consent; lack of clear impartial information which should have been provided prior to requesting consent, on the potential impact of this reseach, as a 'material risk' which patient's have the right to be informed of. The...
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    From the British Society of Physical and Rehabilitation Medicine. In the 'Others' list we are sui generis "thing of its own" "unique" and definitely not in the list of post viral illnesses or other long term conditions with the entry shown as "CFS/ME" The British Society of Physical &...
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Thanks @Dolphin A quote on the forum somewhere recently, fits very well to this situation. 'Men occasionally stumble over the truth, but most of them pick themselves up and hurry off as if nothing ever happened.’ Sir Winston Churchill. There is less talk in research papers about 'recovery'...
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Rehabilitation is defined by WHO as: Rehabilitation is defined as “a set of interventions designed to optimize functioning and reduce disability in individuals with health conditions in interaction with their environment”. Rehabilitation (who.int)
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Agreed on the new paper published. There it is right there: "The toolkit will address the assessment needs and research recommendations (for a core outcomes database) identified in the 2021 NICE Clinical Guideline on ME/CFS. It will be produced following consultation with patients and with...
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I think the purpose of the 2023 and 2024 papers was to update the earlier papers in respect of the use of patient data following on from the GDPR on data in General Data Protection Regulation - Wikipedia# Relevant also is the fact that Crawley's paper in 2013 looked at employment/benefit...
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I haven't fully broken it down either it's far too much reading, and am not sure I've found everything. But I think together we've all found enough to prove the 20 year repeat which seriously brings doubt on whether valid consent was obtained for the PROMS research - because if it results in...
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    Here's a visual for you :banghead: The Code is More Like Guidelines (youtube.com)
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    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    That's the slight of hand they pull though @Trish They teach you about establishing your baseline, staying below your energy envelope, but in their activity homework you (in collaboration prompted by their suggestions and 'living to your values') actually increase your activity weekly! In...
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