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  1. ME/CFS Science Blog

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Just noted that the evidence review of non-pharmacological interventions by NICE is available separately on Pubmed (meaning that most reviews will easily find it). Evidence reviews for the non-pharmacological management of ME/CFS: Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue...
  2. ME/CFS Science Blog

    Investigating the relationship between physical activity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Franklin, 2021

    It's a strange situation because we don't know what the correct data is. if I understand correctly, Wallman et al. gave the raw data to Larun and colleagues but no longer have it themselves. So we don't know if the original Wallman publication is right or Larun et al. or what explains the...
  3. ME/CFS Science Blog

    Grip test results and brain imaging in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Thanks for the analyses @Janna Moen PhD ! I do not have a formal statistical background but will try to comment anyway. I would say it is the interaction that we are interested in here. We want to know how the values of the patients versus controls differed as blocks progressed. Also need to...
  4. ME/CFS Science Blog

    Investigating the relationship between physical activity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Franklin, 2021

    The Wallman et al. 2004 trial was excluded because of discrepancy on how the data was reported in the original paper and in the Cochrane review. On page 131 of the thesis (page 152 of the PDF):
  5. ME/CFS Science Blog

    Investigating the relationship between physical activity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Franklin, 2021

    This was the result of the meta-analysis for the exercise trials review (page 171). The effect size is presented as percentage change from baseline with 10% used as the minimal clinically important difference. The overall effect and the one with the PACE trial removed was clinically...
  6. ME/CFS Science Blog

    Investigating the relationship between physical activity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Franklin, 2021

    The thesis includes a review of exercise trials which has the following passage: So the PhD student believed that all trials were unblinded with subjective outcomes and should therefore be high risk of bias. But his colleagues convinced him that there was no high risk of bias because it were...
  7. ME/CFS Science Blog

    Cardiopulmonary, metabolic, and perceptual responses during exercise in ... (ME/CFS): A Multi-site Clinical Assessment, 2022, Cook et al

    Coming back to this study it seems to have two main findings when looking at the fitness-matched comparison. 1) ME/CFS patients had the same ventilation (VE) as controls but there was a difference in how they achieved this: patients had a lower breathing frequency (fewer breaths per minute)...
  8. ME/CFS Science Blog

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    Most guidelines recommend tube feeding directly into the gut if the risk of aspiration is high as @SNT Gatchaman explained. It is unclear why Roy did not consider this. For example this one on Nutrition Support Therapy in the Adult Critically III Patient say: I also did not see it discussed...
  9. ME/CFS Science Blog

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    Eating can also be combined with tube-feeding. So if there is malnutrition or the patient is severely underweight they should first stabilise his/her weight with, for example, tube feeding. Then they can try to treat the underlying problem. In other words, I see no reason why a physician would...
  10. ME/CFS Science Blog

    Looking for Long Covid: A Clash of Definition and Study Design

    I tend to agree with some of the criticism. Overstating the prevalence of Long Covid is not useful for research or patients IMHO.
  11. ME/CFS Science Blog

    Jejunal feeding: when is it the right thing to do?, Paine et al, 2020

    Yes seems like a problematic view, also explained in this talk by first author Peter Paine: 'First do no harm: walking the gut-brain-nutrition tightrope' - Dr Peter Paine (youtube.com) He seems to argue that a lot of functional gut disorders are more about pain and anxiety and so should be...
  12. ME/CFS Science Blog

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

    No sorry, hope somebody else is able to help.
  13. ME/CFS Science Blog

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

    I wonder if there is any evidence of this... Did not see this mentioned as a risk or complication in PEG reviews or long-term follow ups of PEG(-J) placement. For example: https://www.thieme-connect.com/products/ejournals/html/10.1055/s-0034-1392806...
  14. ME/CFS Science Blog

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

    Might be good to quote from the RCP guideline as it contrasts with what the doctors have done. The guideline gives the following case example (page 71): So, regardless of the cause and medical condition, they should have stabilised or increased BMI to a safe level using clinically assisted...
  15. ME/CFS Science Blog

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

    In the NASA studies using complete bedrest it happened rather soon. From memory: I think most of the change happened in the first days and the blood eventually volume dropped by amount of approximately 10-15%.
  16. ME/CFS Science Blog

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

    Anyone heard anything about PEG-J, PEJ or jejunostomy being considered (i.e.placing the feeding tube directly in the stomach or intestines): were these tried and not tolerated? I find it strange that the discussion seems to focus on a nasal tube (problematic because of risk of aspiration and...
  17. ME/CFS Science Blog

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome After SARS-CoV-2 Infection, 2024, Unger et al

    Surprising result. The controls had an infectious disease as well ('Our study design required an acute infection prompting COVID-19 testing') so that may explain the lack of difference between the groups. Nonetheless, the prevalence of ME/CFS-like illness was quite low, as the authors note:
  18. ME/CFS Science Blog

    The Fear Avoidance Beliefs Questionnaire (FABQ) Does it Really Measure Fear Beliefs?, Aasdahl et al., 2020

    "The FABQ, although originally developed for low back pain, has later been evaluated for other populations and is now widely used. Several studies have showed that the FABQ, particularly the work-subscale, is a good predictor of future work outcomes, and is thus much used in the clinic and in...
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