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  1. ME/CFS Science Blog

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

    I realise that severe ME and not being able to sit upright might cause additional difficulties setting up a feeding tube safely. But the patients described in these reviews were very ill as well, with for example stroke, cancer or dementia that also increase the risk of complications such as...
  2. ME/CFS Science Blog

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

    Here some quotes from reviews on NJ, PEG, PEG-J and Jejunostomy feeding tubes. Gastrostomy and PEG PEG is a safe and effective procedure even if performed in fragile patients Percutaneous endoscopic gastrostomy and jejunostomy: Indications and techniques - PubMed (nih.gov) Tube feeding via a...
  3. ME/CFS Science Blog

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

    Regarding aspiration (food content inhaled into the respiratory tract): the risk was highest for a NG-tube which they did try. So how can it be an argument to not try NJ or PEG-J where the risk is lower than with a NG?
  4. ME/CFS Science Blog

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

    Ok, but there must be some truth-finding involved. You can't just take someone's word for it if they say they did not screw up and did everything right. From summaries that people tweeted, it seems that the Coroner is saying that the death was of natural cause, that nothing more could have...
  5. ME/CFS Science Blog

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

    Do not want to minimise the risk of sepsis but here's for example what a review on long-term TPN says: https://onlinelibrary.wiley.com/doi/full/10.1111/apt.12209 EDIT: here are some more quotes from reviews: https://www.sciencedirect.com/science/article/pii/S0002916523062901...
  6. ME/CFS Science Blog

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

    Could be but doubt it. Would be interested in seeing that protocol if it exists. Even the bad guidelines that we discussed here on S4ME and that do not want to medicalise functional problems are not that bad that they would recommend against trying PEG-J or TPN if there is a clear risk of...
  7. ME/CFS Science Blog

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

    The news articles make it sound like the main problem was that there are no ME specialist clinics and that the doctors did not have experience with ME. From what I picked up from the inquest, the problem was that the doctors had heard of ME and believed that they should not try to medicalise...
  8. ME/CFS Science Blog

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

    Thanks, I'm concerned that the Coroner is taking Dr. Roy's explanation for the truth, while this should have been treated as the heart of the matter and scrutinised by independent experts. From reading guidelines on enteral feeding it is very hard to believe that there were no other options...
  9. ME/CFS Science Blog

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

    I think this is plain wrong. Guidelines recommend going to NJ if NG is not tolerated. This is common in gastroparesis where the stomach doesn't tolerate the feeding but the gut often does. There are also other options such as PEG-J or Jejunostomy with lower risk of aspiration. And if all that...
  10. ME/CFS Science Blog

    Exercise therapy for chronic low back pain (Cochrane review), 2021, Hayden et al.

    Pain measured on a visual analogue scale going from 0 to 100. The main effect MD-15.2, 95% CI-18.3 to -12.2 close to the minimal clinically important difference of 15 points. The effect for functional limitations (MD -6.8 (95% CI -8.3 to -5.3)) was lower than the minimal clinically important...
  11. ME/CFS Science Blog

    Exercise therapy for chronic low back pain (Cochrane review), 2021, Hayden et al.

    Abstract Background: Low back pain has been the leading cause of disability globally for at least the past three decades and results in enormous direct healthcare and lost productivity costs. Objectives: The primary objective of this systematic review is to assess the impact of exercise...
  12. ME/CFS Science Blog

    Cardiopulmonary and metabolic responses during a 2-day CPET in [ME/CFS]: translating reduced oxygen consumption [...], Keller et al, 2024

    Just wanted to highlight that this paper, in contrast to previous exercise studies in ME/CFS, found no evidence of chronotropic incompetence or the inability to increase HR during the exercise test. They used 3 measures for this (%predicted HRmax, %HRRadjusted, and CTIpeak) and none seem to...
  13. ME/CFS Science Blog

    Contribution of individual psychological and psychosocial factors, Dubbo Infection Outcomes Study, 2019, Cvejic, Hickie et al

    One caveat is that the variables aren't standardised z-scores. So the hazard ratio's are representative of a one unit increase in the specified variable rather than 1 standard deviation increase. I don't know why researchers do this because it makes it hard to interpret the effect size and...
  14. ME/CFS Science Blog

    Systemic antibody responses against gut microbiota flagellins implicate shared and divergent immune reactivity in Crohn’s disease and CFS 2024 Vogl+

    The p-value is really small for ME/CFS given that only 40 patients from the UK biobank were used. The authors also wrote:
  15. ME/CFS Science Blog

    Systemic antibody responses against gut microbiota flagellins implicate shared and divergent immune reactivity in Crohn’s disease and CFS 2024 Vogl+

    Difficult paper to read. I assume these are the main results? Anti-fagellin antibody responses against any type of fagellin were increased in patients with CD and ME/CFS compared to matched healthy controls (Wilcoxon tests, P=4.6× 10−10 and P=8.9× 10−10 for CD vs. HC-NL and ME/CFS vs. HC-UK...
  16. ME/CFS Science Blog

    Trial Report Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS, 2024, Muirhead

    Looks like they reported a mean EQ-5D 3L score of 0.47 for ME/CFS (the lowest of all diseases). But if I understand correctly, the one reported by Muirhead et al. is even lower with a mean 0.38.
  17. ME/CFS Science Blog

    Trial Report Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS, 2024, Muirhead

    They don't seem to report this in the abstract but the mean EQ-5D score was 0.38 for ME/CFS patients (the mean of the UK population is 0.86).
  18. ME/CFS Science Blog

    Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study, 2020, Jason et al

    Coming back at this paper. Participants were assessed before mononucleosis (time1) during mono (time2) and 6 months after mono (time 3). The authors reported no statistically significant result at time 1 for anxiety (BAI questionnaire) and depression (BDI-II) but I think this is because they...
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