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  1. Andy

    Trial Report Can a consensus occur on a research case definition for ME/CFS?, 2024, Jason

    Although I can understand why unrefreshing sleep might be mentioned so frequently, how often is it a feature in other illnesses? A very quick Google presents this study suggesting around 10% of all people would report it. Prevalence and Correlates of Nonrestorative Sleep Complaints, 2005...
  2. Andy

    Preprint Most axonal mitochondria in cortical pyramidal neurons lack mitochondrial DNA and consume ATP 2024 Hirabayashi et al

    Abstract In neurons of the mammalian central nervous system (CNS), axonal mitochondria are thought to be indispensable for supplying ATP during energy-consuming processes such as neurotransmitter release. Here, we demonstrate using multiple, independent, in vitro and in vivo approaches that the...
  3. Andy

    UK: Open Letter: Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.)

    I don't know the background to this but have seen it being shared around on social media.
  4. Andy

    UK: Open Letter: Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.)

    "To Secretary of State for Health and Social Care Victoria Atkins MP I am writing to you as a concerned citizen and advocate for individuals suffering from severe Myalgic Encephalomyelitis (M.E.), urging the immediate establishment of a dedicated National Health Service (NHS) protocol to...
  5. Andy

    Neuroimaging in Functional Neurological Disorder: State of the Field and Research Agenda, 2021, Perez, Carson, Edwards, Hallet, Stone et al

    Trial By Error: Leading FND Site Confirms Criticisms on Prevalence Outlined in Our Letter to NeuroIogy Journal https://virology.ws/2024/02/13/trial-by-error-neurosymptoms-org-faq-on-fnd-prevalence-confirms-criticisms-outlined-in-our-letter-to-neuroiogy-journal/ A typo in the title @dave30th ...
  6. Andy

    From Software to Hardware: A Case Series of Functional Neurological Symptoms and Cerebrovascular Disease 2024 Coebergh, Edwards et al

    "We claim that FND symptoms have no physical cause, yet here are some people who, when investigated properly, are found to have physical explanations for the symptoms. Don't worry though, we'll still call it FND, even though this ruins our software/hardware dualistic explanation"
  7. Andy

    From Software to Hardware: A Case Series of Functional Neurological Symptoms and Cerebrovascular Disease 2024 Coebergh, Edwards et al

    Abstract Objective: Neuroimaging studies have identified alterations in both brain structure and functional connectivity in patients with functional neurological disorder (FND). For many patients, FND emerges from physical precipitating events. Nevertheless, there are a limited number of case...
  8. Andy

    Harnessing Placebo Effects for the Treatment of Functional Cognitive Disorder: A Feasibility Pilot Study 2024 Burke, Perez et al

    Just laughable, and morally offensive. "Let's lie to patients so that they answer our questionnaire in such a way that they indicate a non-existent treatment effect".
  9. Andy

    Harnessing Placebo Effects for the Treatment of Functional Cognitive Disorder: A Feasibility Pilot Study 2024 Burke, Perez et al

    Abstract Objective: Limited research has directly investigated whether and how placebo effects can be harnessed for the treatment of functional neurological disorder (FND), despite a long-standing and controversial history of interest in this area. Methods: A small exploratory study was...
  10. Andy

    UK: The Clinical Post COVID Society

    "Post-COVID condition or long COVID is a novel multisystem condition" Novel if you ignore ME/CFS. "Chronic Fatigue Syndrome/Myalgic Encephalitis" And they can't even get the name right.
  11. Andy

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    10, 304 signatures at time of posting. https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
  12. Andy

    The nanoneedle salt stress test – too good a clue to leave abandoned on the lab bench?

    Well, if he has moved on to other things (he now appears to have his own lab, with lab news dating back to April 2019 - https://faculty.sites.uci.edu/esfandyarpourlab/ ) then I don't understand why Ron should then feel such reluctance to continue to investigate the nanoneedle.
  13. Andy

    The nanoneedle salt stress test – too good a clue to leave abandoned on the lab bench?

    Well, I don't think it is made clear whether there was one or two grants, "Rahim Esfandyarpour needed to not only get one of his grants funded to get tenure at the University of California at Irvine where he was working, he needed to get an NIH grant funded.". If there were two, with one needing...
  14. Andy

    International: Science for ME social media posts

    Published papers thread for w/c 5th Feb. Facebook: https://www.facebook.com/sci4me/posts/pfbid0SRy9MuMjxRBANPMXnMbDowuas7WZHBtX3piaViHtG9ZKd6Ac7urCLDxjqRwexk4il Mastodon: https://med-mastodon.com/@s4me/111917870638688307
  15. Andy

    Neuroimaging in Functional Neurological Disorder: State of the Field and Research Agenda, 2021, Perez, Carson, Edwards, Hallet, Stone et al

    Trial By Error: Unconvincing Response to Letter on FND Prevalence Inflation https://virology.ws/2024/02/12/trial-by-error-unconvincing-response-to-letter-on-fnd-prevalence-inflation/
  16. Andy

    The nanoneedle salt stress test – too good a clue to leave abandoned on the lab bench?

    In those quoted comments Whitney pins all the blame on the NIH but doesn't explain why further funding from the OMF wasn't forthcoming - perhaps he will in his blog.
  17. Andy

    Protocol MODIFI: protocol for randomised feasibility study of eye-movement desensitisation and reprocessing therapy (EMDR) for [FND] 2023 Cope, Edwards et al

    It doesn't appear to be indexed on PubMed, which is probably why I did not pick up on it when it was published. This is it on the journal page, https://connect.springerpub.com/content/sgremdr/early/2023/06/26/emdr-2022-0060 - on my screen, to read the abstract, you need to click on the very...
  18. Andy

    United Kingdom: UKCRC (UK Clinical Research Collaboration) Subgroup on ME (part of the UK Government ME/CFS Delivery Plan)

    I understand the limitations of online workshops, however in-person workshops has the effect of limiting patient participation.
  19. Andy

    United Kingdom: UKCRC (UK Clinical Research Collaboration) Subgroup on ME (part of the UK Government ME/CFS Delivery Plan)

    I think Charles is being generous here. I was also at this workshop. My initial understanding of the workshop was that there would be far more opportunity for attendees to input into what they considered to be important directions to research. Instead we had a series of presentations by...
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