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  1. 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?
  2. 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
  3. 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
  4. 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...
  5. 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...
  6. 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...
  7. 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...
  8. 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...
  9. 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...
  10. Hutan

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

    Great that the investigators didn't stop at investigating the proteomics in the Zurich cohort after reassessing with the demographics properly taken into account, but also looked at two cohorts of their own: people post-severe Covid and people post-mild Covid. Regarding that last cohort, the...
  11. Hutan

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

    Thanks for posting @SNT Gatchaman, looks interesting, and a lesson in the need to match cohorts.
  12. Hutan

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

    Chris Ponting's response to the NIH study, as set out there in the discussion with David, is spot on. The study is too small to produce useful results; and there are unwarranted interpretations of the meagre data that is there. It's a disappointment. Chris hints that the mediocre nature of the...
  13. Hutan

    Errors and other considerations in brain imaging

    Interpreting BOLD: towards a dialogue between cognitive and cellular neuroscience some background on BOLD signals in fMRI - although a 2016 paper
  14. Hutan

    "Failings in the care of patients with Very Severe ME" by Dr Nigel Speight, 2024

    Not to take away from the urgent need for better management of people with very severe ME/CFS, and hoping not to distract the conversation, but: I just wanted to note that CBT and other interventions based on a belief that ME/CFS is psychosomatic and can be overcome if the person is diligent...
  15. Hutan

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

    A helpful, sympathetic interview, it's not long, the transcript doesn't take long to read. Here's a key bit of the transcript:
  16. Hutan

    Review [ME/CFS] from current evidence to new diagnostic perspectives through skeletal muscle and metabolic disturbances, 2024, Pietrangelo et al.

    And, that sentence rings alarm bells for me for the opposite reason. We don't know the etiopathology of Longcovid. We know what appears to be the inciting illness, sure, but we know that for a whole range of ME/CFS cases e.g. EBV infection. Still, perhaps their discussion about muscles will be...
  17. Hutan

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    As a reminder of what Peter Gladwell's years of providing care to people with ME/CFS have led him to believe about good clinical services, the AfME Pacing booklet provides a good insight. 'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020. In that thread...
  18. Hutan

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    The aim of the study is to produce a "clinical assessment toolkit", one that can be used in clinical care, but also in the evaluation of both existing and new services. And yet, Sarah Tyson seems to refuse to accept that objective measures need to be a core part of the clinical assessment...
  19. Hutan

    Comparison of the muscle oxygenation during submaximal and maximal exercise tests in patients post-[COVID-19]... 2024 Başak Kavalcı Kol et al

    Sounds very good @SNT Gatchaman. That loss of power that happens sometimes really does feel like inadequate oxygen, it's just like what happens at high altitude. I see you found the paper in this thread - another one of those studies done decades ago. Impaired oxygen delivery to muscle in...
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