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  1. Hutan

    Review Waste Clearance in the Brain, 2021, Kaur et al.

    couldn't help thinking of poor rubbish disposal processes in another intramural entity... Is there anything in particular that led you to this paper @SNT Gatchaman, or is it more just an area of general interest where understanding of processes seems to be improving? It reminds me that we...
  2. Hutan

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    Just to be clear, that quote of "Hutan" above is actually a quote of Jeannette Burmeister's X thread. I don't hate SEID (I had to google to double check the name - Systemic Exertion Intolerance Disease), and the diagnostic criteria with that name is actually my favourite. But, Jeannette is...
  3. Hutan

    2024: USA NIH NINDS ME/CFS Research Roadmap - now published

    I managed to send something in yesterday, a list of studies I'd like to see and a list of research characteristics that I don't want to see (the Walitt et al paper featured heavily as an illustration of various research characteristics that I don't want to see). It was inadequate, other stuff...
  4. Hutan

    Review Does the effect of CBT for CFS (ME/CFS) vary by patient characteristics? A systematic review and individual patient data meta-analysis, 2023, Knoop

    Professor Dinesh Bhugra is on the Board of SANE. He is from the Institute of Psychiatry KCL, as is Wessely. Bhugra is past president of the Royal College of Psychiatrists (2008-2011), as is Wessely (2014 to 2017). etc
  5. Hutan

    News from Australia

    It's a very good article but there are some errors. It falls into the 'research proves a whole range of biological abnormalities' trap. Also, very sadly, New Zealand has not revised our guidelines. The link there is to paper by ANZMES. Good to see Andrew Lloyd's conflicts of interests set out.
  6. Hutan

    News from Australia

    From a Members Only thread about how Alem is doing:
  7. Hutan

    Amyloid-Fibrinogen Aggregates Microclots Predict Risks of Disseminated Intravascular Coagulation and Mortality, 2024, Schofield et al.

    That all makes sense - so still probably an artefact of the in vitro sample preparation, with the different prevalence in sick and healthy people due to the presence of molecules associated with infection or inflammation. If that wasn't the case, the microclots would presumably be able to be...
  8. Hutan

    News from Germany

    The announcement of a dedicated ward for young people with severe ME/CFS and similar diseases, from the ME/CFS Research Foundation, seems important for the care of people with ME/CFS in Germany and perhaps beyond: Germany: ME/CFS Research Foundation
  9. Hutan

    Germany: ME/CFS Research Foundation

    That link is to quite a long and detailed article - excerpt below. It sounds as though a great deal of innovative work is being done. And it could have a tremendous impact. I hope the projects are in good hands - it appears from this that they are.
  10. Hutan

    Amyloid-Fibrinogen Aggregates Microclots Predict Risks of Disseminated Intravascular Coagulation and Mortality, 2024, Schofield et al.

    A Liverpool Hospital team: So sounds as though they used software to identify the micro clots, which removes bias. The association with sepsis looks pretty weak, it's only just significant (p=0.44). But the complete absence of micro clots in healthy controls versus being present in 42% of...
  11. Hutan

    Amyloid-Fibrinogen Aggregates Microclots Predict Risks of Disseminated Intravascular Coagulation and Mortality, 2024, Schofield et al.

    What do we know about this team @SNT Gatchaman? Is it likely that this is independent replication of the finding that microclots exist? Or is the team associated with the original proponents of the phenomenon?
  12. Hutan

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

    An update about our most recent letter to Cochrane has been posted on the petition - the update looks a lot like Trish's summary above. If you haven't had a look at the petition yet, please do. Here's the link: https://chng.it/xwQ9bGgcdL
  13. Hutan

    Comparison of Diagnostic Criteria - discussion thread

    Link to an article by Leonard Jason, setting out the problems with the use of broad diagnostic criteria that don't include PEM: CDC Multi-site Study: Heterogeneity in ME/CFS Illness Measures Not Explained by Clinical Practice, 2024, Unger et al
  14. Hutan

    CDC Multi-site Study: Heterogeneity in ME/CFS Illness Measures Not Explained by Clinical Practice, 2024, Unger et al

    The article is by Leonard Jason I thought this was a very good exposition of the arguments against using ME/CFS (CFS) criteria that don't include PEM. However, I have my doubts about the conclusion, made in the very last sentence: I think, until we have a diagnostic biomarker, an effort to...
  15. Hutan

    Preprint Role of the complement system in Long COVID, 2024, Farztdinov, Scheibenbogen et al.

    I agree that it's nice to see researchers critically looking at studies and having a go to demonstrate the problems. I hope what they have done isn't seen as impolite or fighting though. It's science at work, it's exactly what we need much more of. Us complaining about cohort matching here...
  16. Hutan

    Decline in Mobility and Balance in Persons with Post–COVID-19 Condition, 2024, Feldman et al.

    I experienced this decline in my balance. Relatively soon after I became ill with ME/CFS but before I had a diagnosis, I thought I just needed to be more fit. I signed up for individual pilates classes. I think I started with twice a week, just 30 minutes per session, although dropped that...
  17. Hutan

    Preprint Role of the complement system in Long COVID, 2024, Farztdinov, Scheibenbogen et al.

    Thanks SNT, very helpful links. I know googling proteins can be like reading your horoscope in that there's usually something there that feels personally relevant. It's also fun. Here's a few with high fold change and/or high p values but otherwise randomly chosen. increased CA1 - from the...
  18. Hutan

    Preprint Role of the complement system in Long COVID, 2024, Farztdinov, Scheibenbogen et al.

    As I said upthread, I think the post-mild Covid PACS fatigue+ cohort with some of the participants meeting ME/CFS criteria is the cohort of most interest to us. While I love the overall approach of this paper, (i.e. attempting to account for the noise created by age and sex and BMI), I do think...
  19. Hutan

    Preprint Role of the complement system in Long COVID, 2024, Farztdinov, Scheibenbogen et al.

    Has anyone looked at Supplementary Datafile 5? I don't know what the unit is for the proteins - all of the values seem to be in a very tight range, both between individuals and even between different proteins (ie approx 18 to 21). I assume the figures are the transformed outputs, log adjusted...
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