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  1. Hutan

    ME and PEM recovery via Cyclophosphamide (personal story)

    Although that statistic is often used in information about ME/CFS, it is based on scant evidence. The time since onset seems to have a big impact on chances of recovery - recovery seems to be common up to 2 years, and is still happening up to 3 years. If someone is taking heavy duty drugs that...
  2. Hutan

    A Pilot Study on the Effects of Exercise Training on Cardiorespiratory Performance, Quality of Life, and Immunologic Variables in [LC], 2024, Abbasi+

    I don't know what the +- is, SD? But it doesn't look as though even all the people who didn't drop out experienced a benefit in fitness. Peak work rate +16 +-20 W suggests that some people had a decline in peak work rate VO2 peak +1.55 +-2.4 mL/kg/min suggests that some people had a decline...
  3. Hutan

    Type I Interferonopathy among Non-Elderly Female Patients with Post-Acute Sequelae of COVID-19, 2024, Xu, Qin

    Unfortunately, small sample sizes - only 8 PASC. And with the data coming from samples from seven publications, there could be problems with the selection of the people contributing the samples. I've got to say that it is impressive that there is a database that can offer this sheer quantity of...
  4. Hutan

    Is Long Covid a type of ME/CFS?

    Useful review paper out: The persistence of [ME/CFS] after SARS-CoV-2 infection: A systematic review and meta-analysis, 2024, Dehlia et al Finding that 51% of people with Long Covid in the included studies meet ME/CFS criteria
  5. Hutan

    The persistence of [ME/CFS] after SARS-CoV-2 infection: A systematic review and meta-analysis, 2024, Dehlia et al

    From the abstract, it looks like a useful paper for advocacy. Very good conclusion. Of course, who knows if it is 50%, and I expect there were all sorts of problems with selection differences.... but it's good to be able to back up a statement of 'a significant proportion of people with...
  6. Hutan

    Maeve Boothby O'Neill - articles about her life, death and inquest

    We have had a complaint that this thread is becoming very hard to follow and the moderators agree. Please remember that the topic of this thread is 'Maeve Boothby O'Neill - her life, death and inquest' Before posting, consider if your post would be better on another thread. For example: This...
  7. Hutan

    ME and PEM recovery via Cyclophosphamide (personal story)

    Thanks for writing about your ME/CFS and recovery @siobhanfirestone. Sorry the mods didn't see your question about where to put the thread. The treatments section is fine, we will just expand your title to include the full name of the drug. (If ever anyone wants to ask about where to post a...
  8. Hutan

    Book: "It's Not the Strongest That Survives: A search for answers in the battle against glandular fever and ME/CFS" (2024) by Lily Whelan

    I read the story a while back, and I agree. Well written and easy to read. From memory, Lily reports having chronic EBV, with periodic flares of substantiated active EBV disease, but also with ME/CFS. I meant to go back and read it again not focussed on the story but instead on the symptoms...
  9. Hutan

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

    New abstract (paragraphs added by me for improved readability) The only change from version 1 in the abstract is the use of ME/CFS as the disease name. There's just this bit that I think still needs more work They say that ME/CFS status had a significant effect on only one trait, and then...
  10. Hutan

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Yes, I agree. Dr Kane speaks very well, she manages to come across as both likeable and authoritative. But yes, she, and by extension we, are very vulnerable to how Kane's use of an unevidenced potentially harmful treatment on children is seen. I hope Dr Kane will have the insight to see this...
  11. Hutan

    News from Finland

    (Finland) Social and health services used by persons with chronic fatigue syndrome (Myalgic encephalomyelitis/Chronic fatigue syndrome), 2024, Rentola
  12. Hutan

    Open Finland: Study on pwME having difficulties in accessing social security benefits (master's thesis)

    (Finland) Social and health services used by persons with chronic fatigue syndrome (Myalgic encephalomyelitis/Chronic fatigue syndrome), 2024, Rentola I assume this is the result.
  13. Hutan

    Maeve Boothby O'Neill - articles about her life, death and inquest

    For one shocking moment I read that as Wessely being directly involved in the e-learning, but the screenshots don't suggest that, it's just(!) that he's on the Board of NHS England. Yes, re David Strain - I hope he brings in lots of support for that development work. He might find it helpful...
  14. Hutan

    New Zealand: ANZMES

    Yeah I'm pretty sure an Incorporated Society created under the 2022 Act can decide what a quorum is at their AGM. There is a Constitution Builder and, while there is a minimum on the number of Trustees/Committee Members (at least three), there's no such specification about the AGM quorum. I...
  15. Hutan

    A Network Medicine Approach to Investigating ME/CFS Pathogenesis in Severely Ill Patients: A Pilot Study, 2024, Hung, Davis, Xiao

    Ron Davis' lab, funding from OMF and the Patient-Led Collaborative We know that the body adapts to a lack of physical challenge - there is no need to produce high levels of cortisol if someone is sedentary at home. There is particularly no need to have a marked morning peak cortisol level if...
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