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    General disability advocacy social media posts worth highlighting

    Crutches and Spice is excellent Media communications are her speciality , so Instagram and tiktok is where many pick up info, but she blogs too https://www.instagram.com/reel/CwQ5CvErHBy/?igshid=MTc4MmM1YmI2Ng== ETA US based
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    UK Times and Independent on ME misdiagnosed as Lyme disease, August 2023

    And moving into other areas quite quickly thanks to changing climate
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    Research into formation of ribosomes

    https://scitechdaily.com/new-research-sheds-light-on-the-formation-of-one-of-natures-most-fundamental-molecules/ Interesting as suggestion that parts of process may be dependent on cells metabolism From paper https://www.science.org/doi/10.1126/science.adh3892
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    Forbes: Public Pushes Back On CDC’s Plan To Weaken Infection Control

    Lipkin
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    Investigating the factors associated with meaningful improvement on the SF-36-PFS ... young people, 2023, Crawley et al

    Does the increase in home tuition tally with the drop out rate? So getting worse but still in education of some sorts
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    Investigating the factors associated with meaningful improvement on the SF-36-PFS ... young people, 2023, Crawley et al

    From memory this teams' definition of PEM is not wonderfully accurate. There is never any acknowledgement of key issues in paediatrics. the huge power imbalance which can manifest in therapist pleasing or telling people what you think they want to hear having school attendance as a measure -...
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    Investigating the factors associated with meaningful improvement on the SF-36-PFS ... young people, 2023, Crawley et al

    Were the participants asked ?
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    All-or-Nothing Behavior and Catastrophic Thinking Predict Fatigue in Inflammatory Bowel Disease: A Prospective Cohort Study 2023 Moulton Chalder et al

    How long before " predictive coding" becomes part of this teams' vocabulary?
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    Do the findings in LC suggest two distinct phases for ME/CFS onset?

    Yes, I think true convalescence may make a huge difference. I often wonder where we would be if we hadn't followed the " Bath activity sheets" in early illness with a very competitive child. We need info on other factors too Genetics / epigenetics Existing viral / bacterial status Given...
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    Functional neurological disorder: new subtypes and shared mechanisms, 2022, Hallett, Dworetzky, Stone et al

    Ah so patients are all Buddhist monks ... ( power of mind over physical )
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    Protocol Genetic and Metabolic Markers of BH4 Deficiency in Long COVID - OMF

    Does this mean it's not doing what it's meant to be doing and thus is in serum when it shouldn't be ( a bit like functional B12 deficiency)? Could it be protective as something else is out of whack? When something so interdependent to many processes seems different would it not make sense to...
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    UK doctors knowledgeable in ME/CFS?

    Yep. She's active with longcovidkids and has been great at awareness raising . Need many more like her .
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    Protocol Genetic and Metabolic Markers of BH4 Deficiency in Long COVID - OMF

    From memory BH4 synthesis is folate dependent , so SNPs on MTHFR can affect the amount of BH4 ( also impacts methionine and SAMe) Not so simple.
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    UK doctors knowledgeable in ME/CFS?

    Dr Claire Taylor in Dundee has made long COVID a specialism. Given the huge symptom overlap she does take on ME/CFS patients . I have heard some good things re symptom knowledge and management from others As usual private only and long wait list https://www.drclairetaylor.com/
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    Functional Neurological Symptom Disorder: A Continuing Conundrum for the Perioperative Physician, 2023, Chin and Kumaraswami

    It would be interesting if there were a male comparative case to see if the same procedures and diagnosis were found. Sorry, but being female is part of this problem.. Are there figures for sex split in FND diagnoses ? @dave30th
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    UK Government ME/CFS Delivery Plan consultation

    None here either I was hugely concerned about this 6 years ago - in reality that's not been a bad thing at all ..
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    Newly uncovered biochemical and functional aspects of ferritin, 2023, Yanatori et al.

    My carer aunt has high ferritin and anaemia . Iron supplementation has made a huge difference to her health which she notices almost immediately when she stops . ETA anaemia is recent . Previous iron panel was ok .
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    Long Covid in the media and social media 2023

    Practically the general definition of a teenager' s diet Given the physical and emotional changes it doesn't seem surprising that there are deficiencies there's a huge requirement for chemical substrates
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    Endoscopy - sedation ?

    Thanks @Binkie4
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    Endoscopy - sedation ?

    Thanks @SunnyK . The procedure was postponed twice , so happened in June . The procedure went ok. The nurse could see my daughter was uptight and was lovely . She clearly explained exactly what would happen which always makes a huge difference. Numbing spray worked ok. Just a very weird...
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