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  1. InitialConditions

    Review Autoimmunity’s enigmatic role: exploring the connection with myalgic encephalomyelitis/chronic fatigue syndrome,2024, Batham, Marshall-Gradisnik et al

    They seem to have used quite limited inclusion criteria based on certain terms appearing in the title and/or abstract. Perhaps we need more red tape so that such basic grammar mistakes do not pass the writing, peer review and publication stages.
  2. InitialConditions

    UK Government ME/CFS Delivery Plan consultation

    Here is an X thread and a separate but related BlueSky thread from Katie Johnstone who is reviewing one of the medical education modules that has been developed as part of the DHSC Delivery Plan. She has some concerns—some, though not all, of which seem valid. Do we have anyone here who is on...
  3. InitialConditions

    Trial Report Six-Week Supplementation with Creatine in ME/CFS: A Magnetic Resonance Spectroscopy, 2024, Godlewska et al

    Abstract: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic medical condition with no specific pharmacological treatment. Creatine, a nutrient essential for maintaining energy homeostasis in the cells, is a candidate for interventions in ME/CFS. Methods: Fourteen...
  4. InitialConditions

    NHS bosses reject calls for specialist ME care, 2024, The Times (London)

    I can't access the archive link above, but I scanned this earlier and it's not clear to me how this 'rejection' has come about—is this a formal response to something?
  5. InitialConditions

    Tell me more about nasal sprays as protection against the coronavirus

    I believe this is true. I think even stuff like Vicks First Defence helps lessen the risk of infection. https://www.southampton.ac.uk/news/2024/07/overcounter-nasal-sprays-could-keep-colds-and-flu-at-bay-study-finds.page
  6. InitialConditions

    United Kingdom: ME Association news

    https://meassociation.org.uk/2024/09/job-opportunity-freelance-press-officer/ ME Association is advertising for a freelance press officer. Could be suited to someone with (milder) ME given the expected hours/month.
  7. InitialConditions

    Why can't hospital outpatient clinics cope with patients who can't sit for long in the waiting room? Or can they?

    A 'traditional' model of disability has people needing a wheelchair, and those who are really ill needing a bed right away. I think we with dynamic disabilities and energy-limiting conditions once again fall between the cracks. There are innumerable ways in which healthcare settings could be...
  8. InitialConditions

    New Benefits And Work supplementary guide for members on claiming PIP for ME/CFS

    benefitsandwork.co.uk has just published a new guide for those claiming PIP for ME/CFS. The full guide is only available to paid members, but the page below gives a flavour of what is in the guide. The linked page also includes some interesting stats on PIP claims by those with a primary...
  9. InitialConditions

    2024 Stanford MECFS meeting

    Yeah, this is not good. It's about time we the community cut ties to these cranks.
  10. InitialConditions

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

    It's great to see mathematicians getting involved, but it seems the first author, a post-doc, might only be tangentially involved with ME work at Edinburgh. On first look this seems like high-quality work. Also it's weird seeing a paper on ME typeset in LaTeX.
  11. InitialConditions

    'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths]

    Monica Greco at Goldsmiths is a potential project lead. She has coauthored with Sharpe on BPS topics. It could be that she's supervising this summer project. Edit: Looks like she has moved to the University of Bath. So perhaps she's not the contact at Goldsmiths, although she's listed as a...
  12. InitialConditions

    'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths]

    Raelan is in the states. What I assume has happened is someone has had an idea for this project and they've picked her channel because it's arguably the biggest. But major conflicts of interest. She herself has all sorts of ties to different programmes including at least a dozen brain retraining...
  13. InitialConditions

    'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths]

    I don't have the energy to retype all this. So here's a thread about an undergraduate research internship project at Goldsmiths (University of London). Possible links to BPS researchers, Recovery Norge, etc—major red flags...
  14. InitialConditions

    Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2023, Jensen, Davis et al

    https://www.linkedin.com/in/miranda-dafoe-760b47184 Seems she was working at the Stanford lab for a year. Perhaps a family member? Now doing a nursing degree, according to LinkedIn.
  15. InitialConditions

    Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2023, Jensen, Davis et al

    Ron Davis still seems to be claiming that 50% of us have MS as well as ME. :banghead:
  16. InitialConditions

    Oxidative Stress is a shared characteristic of ME/CFS and Long COVID, 2024, Shankar, Bonilla, Davis et al.

    I get the impression the work on ME/CFS at Stanford is not particuarly well coordinated. I don't see research themes emerging. Are they trying to do to much at once? The abstract for this paper does not give me faith, and people here have rightly pointed out several errors already.
  17. InitialConditions

    Is there a forum like this for autoimmune conditions?

    There are some websites that have multiple forums for different conditions. patient.info is one. The tinnitus forum I visit is based at https://healthunlocked.com/ so you could check there too.
  18. InitialConditions

    Time-dependent complexity characterisation of activity patterns in patients with Chronic Fatigue Syndrome 2024 Rabaey et al

    This looks like complete overkill. You'd be better doing some basic stats—such as time series analysis—on activity data from apps like Visible or from activity trackers.
  19. InitialConditions

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    They've really done an excellent job of leaving the door ajar to a psychogenic interpretation of their findings/conclusions, haven't they? Particularly in the NIH press release. I actually don't mind the idea that the brain is stuck in some sort of loop / state due to the immune system going...
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