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  1. MSEsperanza

    Bristol - New Network - Prof Munafo

    A propos, Prof Munafo is on Twitter: https://twitter.com/MarcusMunafo
  2. MSEsperanza

    RoB 2: a revised tool for assessing risk of bias in randomised trials (2019) Sterne et al.

    Authors' affiliations: https://www.bmj.com/content/366/bmj.l4898.full?ijkey=gzAdEdyR713TWzf&keytype=ref#
  3. MSEsperanza

    Is ME a metabolic problem or a signalling problem?

    (Only able to skim this and related threads and now just slightly amended an older draft which might fit into this thread -- if not, please feel free to move.) Again, I think in order to assess symptoms and build hypotheses on underlying processes, it's important to distinguish between...
  4. MSEsperanza

    US NIH: Responses to NANDS Request for Information: How to advance ME/CFS Research

    In my case what I perceived as exercise-induced muscle stiffness and weakness was assessed as motor fatigue only after I had provided a video documenting my temporary strange gait. My neurologist as well as diverse physiotherapists even think my occasional flares of muscle spasms in other parts...
  5. MSEsperanza

    "Body Reprogramming: Patient guide for recovery using the Hyland model"

    From his university's website: Wow. The origins of health and disease / Hyland, Michael E.. - Cambridge : Cambridge University Press, 2011 He seems to know it all. TOC: http://www.gbv.de/dms/bowker/toc/9780521719704.pdf The author on other threads...
  6. MSEsperanza

    Trial By Error: The School Absence Study, Revisited (Crawley/SMILE)

    https://twitter.com/Healthy_Control/status/1163441460819234816 https://twitter.com/some_wise/status/1164332943268966401 https://twitter.com/Healthy_Control/status/1163802083847487489 https://twitter.com/Healthy_Control/status/1163803297783975936 Thank you @Caroline Struthers
  7. MSEsperanza

    US NIH: Responses to NANDS Request for Information: How to advance ME/CFS Research

    I think both fatiguability and PEM could be measured. IMO it's important to distinguish between the two. Also it could be helpful to distinguish between studying movement patterns as patterns of 'fatigued'/ specifically altered/ impaired movements on the one hand and behavioral patterns (how...
  8. MSEsperanza

    Recruiting: ME Research UK: Investigating sensory processing and cognitive function in people with ME: a pilot study

    A very quick search for studies on post-concussion + both investigators delivered these 2 results (only Sanjay Kumar as co-author): KUMAR, S. , RAO, S. L., NAIR, R. G., PILLAI, S. , CHANDRAMOULI, B. A. and SUBBAKRISHNA, D. K. (2005), Sensory gating impairment in development of post‐concussive...
  9. MSEsperanza

    Severe ME day: August 8 2019

    Just saw that this hasn't been posted yet: "On #severeME day here is a song about my struggle with ME: https://youtu.be/ckBYXPwNaR0 " 'Holding on' by Robert Saunders A beautiful song, ME-friendly audio & video (just displaying the lyrics, white on black)...
  10. MSEsperanza

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    Another important and wonderful article correcting some media campaigners' spin -- thank you, @dave30th Are you aware that you are not only "a man called David Tuller" but you also write for a "blog called Virology"? It's specified as a "well-read blog" at least. (Anyway, I like how you write...
  11. MSEsperanza

    Objective assessment of diverse types of MS related fatigue and fatiguability

    Not read yet, not from the Lurija Instiute either, but as they discuss objective measures of fatigue and fatiguability, I just leave it here: Linnhoff, S., Fiene, M., Heinze, H. J., & Zaehle, T. (2019). Cognitive Fatigue in Multiple Sclerosis: An Objective Approach to Diagnosis and Treatment...
  12. MSEsperanza

    Key Concepts for Informed Health Choices: a framework for helping people learn how to assess treatment claims and make informed choices.

    https://twitter.com/EricTopol/status/1161003716448624640 (Not sure whether this deserves its own thread.) Edit: Maynard, Matt/ Oxman, Andrew/ Pullin, Nicola et al (2019), Key concepts for making informed choices, Nature, vol 572 (15 Aug 2019)...
  13. MSEsperanza

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    If they haven't understood yet, they could read it again -- and raise concerns or aks questions in an open-minded manner.
  14. MSEsperanza

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    I realize it's the Observer and not the Guardian, but as they seem to be a joint publication, the editors in charge might want make themselves aware of the corrigendum Guardian's Ian Sample added to a podcast on the same topic: "in the podcast we talk about a paper on CFS interventions that...
  15. MSEsperanza

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    Apologies for just popping in. Most probably already said by others -- about how the accuser repsonds to sientists' criticism on social media: Edited to add: Or to more widely acknowledged campaigners:
  16. MSEsperanza

    BBC radio programme on diagnostic names 12/07/2019

    Episode 3: „What‘s in a Label?“, BBC Radio 4 (D for Diagnosis) How accurate is a mental health diagnosis? Claudia Hammond reports on the value of a label and finds out why some mental health practitioners just refuse to give them. (ME / CFS not mentioned in the text, not able to listen))...
  17. MSEsperanza

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Is the questionnaire similar to this 'Brainstem Disability Index'? Table 1 Brainstem Disability Index The following 20 symptoms may be referable to pathology at the level of the brainstem. Please indicate yes or no whether your child has any of the following symptoms on a recurring or...
  18. MSEsperanza

    Fatigue Exacerbation by Interval or Continuous Exercise in Chronic Fatigue Syndrome (2016) Sandler, C; Llloyd, A; Barry, B

    Stumbled across this study and thought it could be a bad example of doing a study using accelerometers? Just leave it here for others to judge. For Andrew Lloyd see e.g. https://www.s4me.info/threads/david-tuller-trial-by-error-a-post-about-andrew-lloyd.3349/ A similiar study by almost the...
  19. MSEsperanza

    Fatigue Exacerbation by Interval or Continuous Exercise in Chronic Fatigue Syndrome (2016) Sandler, C; Llloyd, A; Barry, B

    Sandler, C; Llloyd, A Barry, B (2016), Fatigue Exacerbation by Interval or Continuous Exercise in Chronic Fatigue Syndrome, Medicine & Science in Sports & Exercise: October 2016 - Volume 48 - Issue 10 - p 1875–1885 doi: 10.1249/MSS.0000000000000983 /...
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