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  1. ME/CFS Skeptic

    Trial Report Randomized controlled trial of intravenous immunoglobulin for autoimmune postural orthostatic tachycardia syndrome (iSTAND)

    Yes strange that IVIG had the lowest decrease in mean score but the highest percentage of improvers. The following figure is from their pre-print.
  2. ME/CFS Skeptic

    A body–brain circuit that regulates body inflammatory responses 2024 Jin et al

    Sounds interesting. Let's hope it is relevant to ME/CFS and post-infectious illnesses.
  3. ME/CFS Skeptic

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    "to answer the question, consistently completing the tasks is not a requirement for a valid effort test administration" But the problem is that the task likely required more effort for patients than controls. Lower completion rate is probably only a reflection of that, as was the proportion of...
  4. ME/CFS Skeptic

    Neurostimulation

    There have been several local news articles where chronic pain patients report improvement with a neurostimulation device that unfortunately costs tens of thousands of euros. Some ME/CFS patients with chronic pain have asked about this too. Does anyone have experience with it or is anyone...
  5. ME/CFS Skeptic

    Trial Report Validity and diagnostic overlap of functional somatic syndrome diagnoses, 2024, Rosmalen

    They found a prevalence of 3.1% for CFS (Fukuda-criteria) which is abnormally high. I think this could be the reason: "the FSS diagnosis was based on the responses to a questionnaire, without an assessment by a physician. The large sample size required for the current study implied that it was...
  6. ME/CFS Skeptic

    Development of an expert system for the classification of myalgic encephalomyelitis/chronic fatigue syndrome 2024 Yagin et al

    They needed 50 out of 832 available metabolites for a model to separate patients and controls. To me that suggest they had a really hard time separating the two groups.
  7. ME/CFS Skeptic

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    The webinar itself is available here: https://www.zonmw.nl/nl/nieuws/terugblik-webinar-over-onderzoek-naar-mecvs
  8. ME/CFS Skeptic

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    During the Webinar Rosmalen also answered to the question how Lifelines determines if someone has ME/CFS or not. This is a quickly translated transcript: Presenter: How are people in Lifelines determined to actually have ME/CFS? Rosmalen: As Sonja said, we start with a questionnaire and we...
  9. ME/CFS Skeptic

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    Here's an English translation of what she said in Dutch during the webinar. Martje Bos: "We conducted research in Lifelines. That's a population cohort in the northern provinces of the Netherlands where, among other things, the symptoms of ME/CFS are enquired. So it asks: do you suffer from...
  10. ME/CFS Skeptic

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    From what I understood, the lifelines estimate was based on how prevalent ME/CFS was among relatives of ME/CFS patients.
  11. ME/CFS Skeptic

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    Apologies, the last one should have been 'without ME/CFS'.
  12. ME/CFS Skeptic

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    The researcher mentioned above was Martje Bos, who is a ME/CFS patient herself and is studying ME/CFS in relation to other functional syndromes such as IBS and fibromyalgia. Another researcher, Cindy Boer said that she is leading a new major collaboration: ‘Genetic epidemiology of ME/CFS’ that...
  13. ME/CFS Skeptic

    Genetic Risk Factors of ME/CFS: A Critical Review. Joshua J Dibble, Simon J McGrath, Chris P Ponting. 2020

    During the ZonMw conference on the Dutch ME/CFS research program yesterday, one researcher said that they estimated the heritability of ME/CFS in the Lifelines cohort at 43% [34-51] - findings that are still to be published. This post has been copied and subsequent posts about a planned Dutch...
  14. ME/CFS Skeptic

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    Post copied and subsequent posts moved from Genetic Risk Factors of ME/CFS: A Critical Review. Joshua J Dibble, Simon J McGrath, Chris P Ponting. 2020 During the ZonMw conference on the Dutch ME/CFS research program yesterday, one researcher said that they estimated the heritability of ME/CFS...
  15. ME/CFS Skeptic

    Trial Report Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell

    Seems like a useful paper that identified many of the problems with the popular Chalder Fatigue Scale, that have been mentioned multiple times here on the forum. Some quotes from the paper: One challenge relates to the initial instruction: ‘If you have been feeling tired for a long while...
  16. ME/CFS Skeptic

    Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial 2023, Kuut, Knoop et al

    The results were similar 1 year post CBT compared to 6 months post CBT. Unfortunately there was no longer a control group, the authors write: "For ethical reasons, patients randomized to care as usual were offered CBT and could therefore no longer serve as a control." In previous CBT and GET...
  17. ME/CFS Skeptic

    Trial Report Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI, 2024, Thapaliya et al

    What do they mean by the following? "the Glu (p=0.017) level was only significantly higher in ME/CFS after adjusting for multiple group comparisons" Also weird that Long Covid patients had a strong negative correlation between physical function and Glx, while in ME/CFS patients there was a...
  18. ME/CFS Skeptic

    Video: Who Funds Research? | Why The Charity Sector is Vital For Long Covid & ME/CFS

    Interesting analysis. Many thanks to Peter for doing all this research, I found it very useful. Might be good to write it down into a blog post that is a bit shorter and easier to digest so that it can reach a wider audience.
  19. ME/CFS Skeptic

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    In the methods section on page 19 in the paper: "...Finally, the participant learned if they have won, based upon the probability of winning and the successful completion of the task. This process repeats in its entirety for 15 min. "
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