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    United Kingdom: ME Association governance issues

    I don't know how much palliative care is directly funded by NHS and how much is carried out by charities' funding . This may be interesting as it could be a cohort where staff education could potentially push things forward .
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    Heightened innate immunity may trigger chronic inflammation, fatigue and [PEM]…, 2025, Che, Hornig, Bateman, Klimas, Komaroff, Lipkin+

    Mitochondrial DNA function in inmate immune response ? ETA info re mitochondrial role in fungal infection https://www.frontiersin.org/journals/cellular-and-infection-microbiology/articles/10.3389/fcimb.2025.1576485/full
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    Lactic acid, lactate in ME/CFS

    ischemic cardiomyopathy - impacts mitochondrial activity too ?
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    Review [+ Case Report] [POT] With [CF] After HPV Vaccination as Part of the “Autoimmune/Auto-inflammatory Syndrome Induced by Adjuvants”, 2014, Tomljenovic+

    POTs has been a consequence of early versions of HPV vaccinations for a small number of people . I've known of Scottish kids who developed POTS ( one of whom met ME/ CFS criteria , but has since improved over 5 years ) during the initial vaccination campaign for teenage girls. Tymes Trust were...
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    Fred Rossi - Writings related to ME/CFS

    Another post https://open.substack.com/pub/centerleftstack/p/those-who-were-already-here?utm_source=share&utm_medium=android&r=1d5w3s
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    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    You've made my day
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    Mapping the Complexity of ME/CFS: Evidence for Abnormal Energy Metabolism, Altered Immune Profile and Vascular Dysfunction, 2025, Heng

    So ATP being chucked out of cells AMP in abundance Rather than low energy state could we look at it as signalling going haywire ?
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    NHS website: opportunity to give feedback

    I can't find the survey - perhaps blocked as I am not England and Wales NHS ?
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    Fascia as a regulatory system in health and disease, 2024, Slater et al.

    Not much sleep the past few days so this will sound very tangential. Mods may remove if nonsense . Does this nicely link to the research paper with scans which initially looked like lymphs lit up and @Jonathan Edwards suggested may be fascia?
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    Helping nurses prepare for uncertainty in clinical practice, 2025, MAY

    Then no thinking is required
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    The National Archive Document BN141/1: The DWP file

    Valerie Eliott smiths website has links to the file (s) https://valerieeliotsmith.com/2015/01/20/the-secret-files-unwrapped-part-i-the-importance-of-fair-and-accurate-records/...
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    Itaconate modulates immune responses via inhibition of peroxiredoxin 5, 2025, Tomas Paulenda et al

    I favour the double tap. Childhood here saw chickenpox disturb something Glandular fever in teenage years was the second "tap" smack bang when bodies are chemical soups.. It seemed like a viral tag team. Do viral (and bacterial ) strains work together , if so which ones are known / prevalent and...
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    Itaconate modulates immune responses via inhibition of peroxiredoxin 5, 2025, Tomas Paulenda et al

    Early onset , pre puberty , may give a clearer picture of any predisposition prior to puberty kicking in ?
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    United Kingdom: ME Association governance issues

    A key aspect is why were MEA funds used to devise KPIs for NHS clinics ? This is more service evaluation than anything else- and will perpetuate the current model due to the way it's framed.
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    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    MEA had a post on social media today lack of Specialist provision in Scotland ( basically none) God help us if this is rolled out.
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    GRIN2A null variants confer a high risk for early-onset schizophrenia and other mental disorders and potentially enable precision therapy, 2025, Lemke

    For the First Time, Mutations in a Single Gene Have Been Linked to Mental Illness | WIRED https://www.wired.com/story/mutations-in-a-single-gene-have-been-linked-to-mental-illness/ In their article, published in Molecular Psychiatry, the researchers demonstrated that the gene mutation reduces...
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    Exploring a genetic basis for the metabolic perturbations in ME/CFS using UK Biobank, 2025, Armstrong et al

    And cholesterol lowering meds disrupt cq10 pathways significantly.
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    Recovery from chronic fatigue syndrome: a reflexive thematic analysis of experiences of people before, during and after treatment, 2025, Chalder+

    They've been nudging this for years
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    Exploring a genetic basis for the metabolic perturbations in ME/CFS using UK Biobank, 2025, Armstrong et al

    So we have SNPs but do we know their expression..whether they are on or off makes a huge difference.
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    Who is Simon Wessely?

    Though completely brazen in this and other instances ( Iranian schoolgirls, Heathrow chemical incident ....) Why spoil a good run ( particularly if you're female) It's the diagnosis of first resort. B12 deficiency - anxiety POTS - anxiety Sleep issues - anxiety Thyroid - anxiety Etc
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