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  1. rvallee

    Activation of the ISR mediates the behavioral and neurophysiological abnormalities in Down syndrome (in mice)

    Abstract: https://science.sciencemag.org/content/366/6467/843 Hard to say whether this has any potential value to ME but cellular stress response is an area of research of great interest.
  2. rvallee

    SF-36 predicts 13-year CHD incidence in a middle-aged Swedish general population, 2019, Nilsson et al

    Uh, wat? How does that even follow? It's really a tell of how truly fragile the BPS model is that even after decades its proponents still find it necessary to randomly sprinkle "BPS is definitely good and useful and not pseudoscience because reasons" even though it's unrelated to the topic. Bit...
  3. rvallee

    Towards an institute for patient-led research - Trish Greenhalgh, BMJ blog November 12, 2019

    Update: still "pending". No other comments have been either made or approved. Not sure why it should take this long. Did I make people reflect on things? *gasp* Probably not...
  4. rvallee

    Harvard Medical School article: Chronic fatigue syndrome: Gradually figuring out what’s wrong. Komaroff. 2019

    Seems to refer to the general malaise, brain fog, weakness and aches that accompany the flu and is caused by the body's response, not the pathogen. It doesn't seem to be a well-defined concept. Sometimes called the sickness response but I'm not sure why he chose that hunker down label. It would...
  5. rvallee

    The Lancet: "Offline: The gravy train of systematic reviews" Richard Horton Nov 2019

    It's weird that this could have been written specifically about us and yet most of the people involved would insist that our case is different, despite fitting every single point. Which actually points to the root issue, that much of those reviews are the product of people who want the...
  6. rvallee

    Mayo Clinic Guide to Fibromyalgia: Strategies to Take Back Your Life By A. Abril M.D. & B.K. Bruce Ph.D. L.P., Mayo Clinic Press (2019)

    Not on the claim of miscommunication between nerves and how it relates to the brain. This seems to be the CSS thing. It is widely believed but has no evidence for it. It could be partially correct, but to make that claim until it is is irresponsible. This is exactly the main criticism against...
  7. rvallee

    Towards an institute for patient-led research - Trish Greenhalgh, BMJ blog November 12, 2019

    Update: my comment was censored. Let's unpack this. On an article promoting a new model of increased patient engagement, misleadingly citing as example of failed patient engagement a maligned disease whose failure to achieve any progress in 3 decades rests mainly on having failed to engage with...
  8. rvallee

    Unidentified (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics, 2011, Crawley et al

    Hold up isn't that the complete opposite? That the review panel has found that ethical approval should have been sought because it should have been classified as research? Which it clearly was. Do service evaluation even need to get REC approval? The original article is still classified under...
  9. rvallee

    Mayo Clinic Guide to Fibromyalgia: Strategies to Take Back Your Life By A. Abril M.D. & B.K. Bruce Ph.D. L.P., Mayo Clinic Press (2019)

    Literally zero evidence for this claim. It could be true, if eventually demonstrated. Still, there is exactly zero evidence behind it. Why do medical professionals make claims with zero evidence behind them? I don't get it. I'm so disappointed at the whole thing, so many unprofessional people...
  10. rvallee

    Intra brainstem connectivity is impaired in chronic fatigue syndrome, Barnden et al., 2019

    It's disappointing how little research there has been in remissions, and generally the relapsing-remitting cycle that some people have experienced. I'm one of those. I had roughly, IIRC, 3 full cycles lasting about 2 years, with sudden drops followed by months of severe illness, then slow...
  11. rvallee

    Towards an institute for patient-led research - Trish Greenhalgh, BMJ blog November 12, 2019

    I see no way of doing a response so I used the commenting system. Could have been better, my mind is pretty foggy today, but here goes in case it's censored:
  12. rvallee

    Complex Regional Pain Syndrome (CRPS), what to do?

    These fools better pay attention to what is happening with Eysenck, which itself is likely far from over and should spill onto the crisis of replicability and how the BPS model is built from the same foundations. What a load of garbage. It almost reads like projection to convey such specific...
  13. rvallee

    The longitudinal effects of seated isometric yoga on blood biomarkers, autonomic functions, & psychological parameters of [PwCFS], 2019, Oka et al

    So as usual, poor psychometric questionnaires are a largely useless tool for evaluation. Chapter 328946. 30 years. Still depending on useless questionnaires while avoiding objective outcomes like the plague. It's not like nuclear fusion or other hard problems that are seeing constant progress...
  14. rvallee

    Towards an institute for patient-led research - Trish Greenhalgh, BMJ blog November 12, 2019

    It pretty much makes the case. The "conflict" in ME is precisely disastrous because the patient community has been contemptuously excluded and maligned by the researchers who dominate it despite having no useful understanding. This is actually a great example supporting the need for patient...
  15. rvallee

    Radio 4 and 5 Live Put IAPT Under The Microscope - Nov 13 2019

    I'm not really sure how that's even possible. How can anything be this much of a mess? With all this excessive funding and water-carrying by authorities and PR by the SMC and lowering the bar several storeys beneath ground level. It's almost spectacular, like watching not A Hindenburg but a mass...
  16. rvallee

    News from Scandinavia

    Time is a damn circle because some people insist at beating it into that shape. You'd think the smart people whose job it is to help other people would be careful about not repeating the exact same mistakes in the exact same way and yet here we are, with the same consequences from those past...
  17. rvallee

    Open letter to Dr Peter Fisher, Liverpool University, about a research survey on emotional distress and CFS. 2019

    From the comments submitted over the years to various committees and review processes, such as the recent NHRMC review in Australia, the NIH requests to the community and various other proceedings, I get the impression that those do not rank at all in the main concerns, that when free form is...
  18. rvallee

    A general thread on the PACE trial!

    We have seen some comments over the years but a consolidated list of verified comments would be very useful. No matter what it says, I would be very much interested in hearing from those participants' own words.
  19. rvallee

    A general thread on the PACE trial!

    Video reference says: It seems like the audience was already familiar with the topic so probably included some supporters who went there to support her. As she explained in the video she gave an ultimatum to the GMC to provide answers to questions she asked about but was ghosted and that she...
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