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    The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)

    People struggle to understand that no provision can be better than some provision for a lot of people. Until education has caught up and harms are accurately recorded specialist provision dosn't count for much at all. There is no acceptable basis to work up from as exists at the moment.
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    Affective dysregulation and sex differences in somatic symptom disorder: A 6-month longitudinal and mediation analysis 2025 Park et al

    And perhaps question why females are angry ... it's not rocket science.
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    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    And the DHSC plan will deliver ....
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Charles Shepherd will be on Radio Scotland at 10-40 . Health is devolved. I seriously hope that this is not emulated . Having no services was exactly what saved my daughter from GET and the ability to avoid a referral to Bath. I've posted on their Facebook page ME Association. Your...
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    General news about Fabricated and Induced Illness syndrome (FFI)

    And who I wonder will be working in the group updating guidance . There's a reason why the 2021 version is so awful .
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    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    Is this shenanigans, together with the BACME guide a taster of the MEA when Charles retires fully ? Its antics this past year in a number of spheres serve no-one well
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    UK:'Challenging Harmful and Out-of-Date DWP Training on M.E./C.F.S.' [influenced by BACME] by Sally Callow, July 2025

    It may be an idea to repeat the clinic survey MEAction (?) did that fed into NICE re patient experience of clinics and the clinic survey Graham did with @Tom Kindlon (?) re recording of harms It may give some data on exactly what has changed ( or not)
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    ❗️ DHSC publishes the Final Delivery Plan on ME/CFS The Department of Health & Social Care has published the Final Delivery Plan on ME/CFS. We have issued a detailed statement on our website https://www.actionforme.org.uk/dhsc-publishes-the-final-delivery-plan-on-me-cfs/ The Plan’s...
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    Personal project: Sick Genes, a website for compiling significant gene findings from studies on ME/CFS and other conditions

    A lot of hard work , thank you @forestglip
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    Scotland: “Lived experience of neurological conditions” Survey

    Scottish Neurological Survey report issued https://www.scottishneurological.org.uk/file-download/91/today%E2%80%99s-challenge,-tomorrow%E2%80%99s-hope-(july-2025).pdf
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    A novel estrogen receptor 1: sphingomyelin phosphodiesterase acid-like 3B pathway mediates rituximab response in myositis patients, 2022, Parkes et al

    I don't know if it would be a factor worth considering but did gender make a difference to responder v non responder ?
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    NICE Clinical Knowledge Summary (CKS) on ME/CFS, July 2025

    the shitshow continues... the king is dead long live the king
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    What could it mean biologically that both physical and cognitive exertion can cause PEM?

    @mariovitali Pretty sure misfolded proteins have been run in one of your network analyses
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    United Kingdom: ME Association news

    I expect there will be illuminating Facebook posts along familiar lines .....
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    General thread on functional disorders in Denmark

    Cochrane has always been a problem. It's not going away. Recent published and opinion pieces are shoring it up. It seems to defy logic .
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    Lack of fever during acute infections

    My daughter has low basal temperature . Typically around 35- 35.5, but has been as low as 34. Infections make her feel hot - at times she feels burning hot internally , but she dosnt typically develop fever and if anything is clammy to touch. She also can't sweat much So temperature...
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    The Implications and Predictability of Sleep Reversal for People with [ME/CFS]: A Machine Learning Approach, 2025, Dietrich, Jason et al

    It would be interesting for a comparison with the corresponding younger age group.in the general population. Sleep issues are common . Sleep reversal less so ,but may be worth comparing to see how different it is.
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    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    Cheap at the price. My mother in law's glucose monitors are £50 per 2 weeks .
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    Heat vs. Fatigue: Hyperthermia as a Possible Treatment Option for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2025, Hochecker

    If ME/ CFS cells had higher function at baseline why would increasing this be a good thing? It may tip from a relatively stable ( but pretty awful ) state into a worse one . Heat here is a big negative . ( But perhaps that's the Scottish genetics where 18 °C feels tropical :))
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    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    @Suffolkres
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