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  1. Nightsong

    NICE Clinical Knowledge Summary (CKS) on ME/CFS, July 2025

    Something else I find hard to understand is why these CKS summaries are going out under the NICE name & branding, yet are being produced by a private company with apparently no opportunities for patient or public involvement. It seems to make a mockery of the NICE guideline procedure if...
  2. Nightsong

    NICE Clinical Knowledge Summary (CKS) on ME/CFS, July 2025

    Well, this is why it's so bad - it's based in part on those BACME guides:
  3. Nightsong

    Two Neurocognitive Domains Identified for Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and [PASC], 2025, Jason et al

    Abstract: Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post-Acute Sequelae of COVID-19 (PASC) often have neurocognitive complaints that involve memory and concentration problems and difficulties paying attention. Other neurocognitive domains such as...
  4. Nightsong

    Review Redefining Mitochondrial Therapy for ME/CFS: The Case for MOTS-c, 2025, Klimas et al

    In addition a number of references are also duplicated - e.g. 8, 9, 10 are duplicated as 13, 14, 15.
  5. Nightsong

    IFNγ causes mitochondrial dysfunction and oxidative stress in myositis, 2024, Abad et al.

    Re follow-up of the Behan result, there was also: Electron-Microscopic Investigation of Muscle Mitochondria in Chronic Fatigue Syndrome (Plioplys & Plioplys, 1995) Muscle fibre characteristics and lactate responses to exercise in chronic fatigue syndrome (Lane et al., 1998)
  6. Nightsong

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    "Third delay to ME care plan prompts backlash from patients" (The Times): Link | Archive.ph link | 12ft link
  7. Nightsong

    Australia: National Health and Medical Research Council (NHMRC): Development of ME/CFS guidelines

    From the referenced 2020 narrative review in Med. J. Aust. - seems deeply problematic in its coverage of CBT & GET: https://onlinelibrary.wiley.com/doi/abs/10.5694/mja2.50553
  8. Nightsong

    News from The Netherlands

    "Trial By Error: Dutch Journalist Faces Off Against CBT/GET Ideologues": https://virology.ws/2025/06/25/trial-by-error-dutch-journalist-faces-off-against-cbt-get-ideologues/
  9. Nightsong

    Warnings against dangerous Miracle Mineral Solution (bleach, chlorine dioxide)

    Chlorine dioxide is typically used as a disinfectant or bleaching agent. It is toxic and corrosive and definitely not meant for human consumption. If any doctor is promoting this as a treatment for any disease they should be struck off.
  10. Nightsong

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    Copied post Re Carson: what puzzles me is why he is seen as an expert on ME/CFS. The only relevant link seems to be that, according to Carson's declared interests on the SMC's website he "led writing of the Scottish Good Practice Statement in ME/CFS in 2008" - but how did he manage to get...
  11. Nightsong

    How should biological researchers present their results about ME/CFS to the media - discussion thread.

    Copied post Re Carson: what puzzles me is why he is seen as an expert on ME/CFS. The only relevant link seems to be that, according to Carson's declared interests on the SMC's website he "led writing of the Scottish Good Practice Statement in ME/CFS in 2008" - but how did he manage to get...
  12. Nightsong

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    I also don't see any significant overlaps with the results in Pu et al. - has Carson even skimmed through either paper, or is he just winging it?
  13. Nightsong

    Who is Simon Wessely?

    The years don't match, but are you thinking of this 2011 JNNP commentary that reflects on his well-known 1989 paper? https://jnnp.bmj.com/content/83/1/4
  14. Nightsong

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    The no-a-priori-hypothesis claim is silly - there's a clear research question & rationale for the methodology; it's not some fishing expedition. I've only skimmed the paper but think he's conflating the cross-sex replication set (116) with the total (511) & the 150-by-chance/116 observed is...
  15. Nightsong

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    The main NDE/NIE models didn't include BMI (only age & sex) but following peer review comments (comment 3, p16 of the peer review) they re-estimated the blood-trait NDEs with BMI as an additional confounder. Fig. EV5 shows male vs. female-specific BMI adjusted z-scores. So the classical...
  16. Nightsong

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    A notable addition to the published version - made at the request of one of the peer reviewers - was a replication attempt of 14 of the traits using the US-based "All of Us" programme (Fig 8, p13):
  17. Nightsong

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    Now published: Link | PDF (EMBO Molecular Medicine, June 2025, open access) The peer review is also available: https://www.embopress.org/action/downloadSupplement?doi=10.1038/s44321-025-00258-8&file=44321_2025_258_MOESM1_ESM.pdf The Times has a piece on it: Link | Archive.ph link | 12ft...
  18. Nightsong

    Neurodevelopment Genes Encoding Olduvai Domains Link Myalgic Encephalomyelitis to Neuropsychiatric Disorders, 2025, Lidbury et al

    Abstract: Background/Objectives: The aetiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic and severe debilitating disease with a complex phenotype, remains elusive. Associations with infectious diseases and autoimmune and neuropsychiatric disorders have been...
  19. Nightsong

    Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care, 2025, Cupit et al

    I downloaded this paper a few days ago but have only just got around to looking at it - it is unintentionally very revealing regarding the lack of evidence for BPS services. 1/ The authors relate that, in 2023, an MEA complaint to the Advertising Standards Authority regarding a programme known...
  20. Nightsong

    United Kingdom: ME Association news

    "SNOMED CT Coding: Optimising ME/CFS and Long COVID Care": https://meassociation.org.uk/2025/06/snomed-ct-coding-optimising-me-cfs-and-long-covid-care/
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