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  1. Ravn

    US: Annual ME/CFS Working Group Meetings from 2020. Stanford/OMF

    Must keep an eye on my sleep records next time I get hit with PEM to see if there's a change to REM sleep. I do know my deep sleep decreases significantly with PEM, I wonder why they didn't look at deep sleep here?
  2. Ravn

    US: Annual ME/CFS Working Group Meetings from 2020. Stanford/OMF

    For those who are wondering:
  3. Ravn

    NZ: The 2020 Brain Health Research Centre Lecture - Professor Warren Tate - 23 November 2020

    I've been given permission to share the details for joining the lecture virtually via Zoom. [Edited: Removed zoom login details. While I was given permission to share I've since heard from other people that they're are now being asked not to share due to concerns about capacity on the zoom call...
  4. Ravn

    US: Annual ME/CFS Working Group Meetings from 2020. Stanford/OMF

    Some slides which appear to come from the symposium have turned up. https://www.omf.ngo/wp-content/uploads/2020/10/Prof-Moreau_4th-Annual-Working-Group-Symposium_Stanford-University_Sept-8-11-2020-v6.pdf Please don't ask me where I found the link. I open links I stumble across in new tabs to...
  5. Ravn

    Pacing - what do you do/how would you describe it?

    @PhysiosforME Looking forward to your podcast. Here is the link to one of the pacing guides Trish mentioned. The discussion we had in that thread about the drafts for the guide may be helpful, too.
  6. Ravn

    NZ: The 2020 Brain Health Research Centre Lecture - Professor Warren Tate - 23 November 2020

    I contacted the university to find out if they're recording the lecture. Unfortunately the answer was no. However, they are planning to live stream via zoom. It's not mentioned on the website but if you contact Emily (email address on the website linked) she can give you the login details.
  7. Ravn

    Restless legs syndrome

    Yeah, I take mega-much magnesium for another issue (under supervision of my doctor). Started about 3 or 4 years ago so memory a bit vague but I do recall being rather disappointed at the time because I'd hoped the magnesium would, as a beneficial side effect, help my restless legs and general...
  8. Ravn

    Restless legs syndrome

    Just wanted to highlight the word 'test' in the sentence above to anybody considering iron supplementation to treat restless leg syndrome: do get a test first. Iron is one thing you really don't want to get too much of. n=1 I have restless legs and haemochromatosis (iron overload). I've never...
  9. Ravn

    Prediction of Discontinuation of Structured Exercise Programme in Chronic Fatigue Syndrome Patients, Kujawski, Newton, Hodges et al, 2020

    Agree. For all we know, all they managed to show is that those without PEM managed to complete the treatment and those with PEM dropped out. But since they didn't ask about PEM, who knows. The other thing missing (unless I missed it) is whether the completers actually got fitter or better or...
  10. Ravn

    Lipid droplets - have they been investigated in ME? Should they be?

    There's even a glimmer of hope we may, eventually and indirectly, learn more about the role of lipid droplets in ME. Their role in active Covid19 has caught the eye of researchers. With any luck this will lead to some of them looking into their role in long Covid, and with a great deal of luck...
  11. Ravn

    Lipid droplets - have they been investigated in ME? Should they be?

    The existence of lipid droplets in cells is nothing new. But it now seems they could have more functions than previously thought: they may play key roles in innate immune response and in regulating cell metabolism. The only search result I got for 'lipid droplets + ME?CFS' is this 2017...
  12. Ravn

    What research do you want to see? (study ideas)

    This! And again, for emphasis: THIS!!! Just how do we get funding for replication studies? The whole research ecosystem seems to be set up so that it's those chasing the latest and newest angle with the shiniest toys are the ones who get whatever little funding is available for biomedical ME...
  13. Ravn

    Video: Energy Management in Chronic Illness: Practical Tips, pts 1&2 [Workwell and Whittemore Peterson Institute]

    Slide used in the video, also available here: https://workwellfoundation.org/wp-content/uploads/2020/03/WW-PEM-Timecourse.pdf We've discussed this somewhere before - that I can't locate now - and seeing it again I'm still puzzled by it. I understood the presentation to mean the different types...
  14. Ravn

    News from Scandinavia

    The last two articles were first published in March 2019. The first one is new and I didn't get a paywall. Excellent article, sensitively written. It says the earlier feature from March 19 was one of the most read stories of 2019. Go give them some traffic on this one, too, keeps the editors...
  15. Ravn

    The brain tissue abnormality analysis, 2020, and other proposed studies, Polybio Research Foundation, van Elzakker, Proal, Fobes

    Community Q&A with Polybio, October 26. Details and registration here: https://www.meaction.net/event/community-qa-with-polybio/ Sounds impressive but... funding. Why reserve the additional info on study design etc. for those "capable of making larger tax deductible donations"?
  16. Ravn

    New Zealand Video: Exercise and ME/CFS, 2020, Lyn Hodges

    She says she rates her participants mild to moderate. I'd be very surprised if anyone with moderate ME would recover from PEM within 72 hours. But I guess if PEM is a cascade of processes going wrong where one thing leads to another leads to another leads to another... then it's hypothetically...
  17. Ravn

    New Zealand Video: Exercise and ME/CFS, 2020, Lyn Hodges

    We don't know. But many with very mild ME will choose to exercise - like the person mentioned in the video who trained for a multisport event, ignored the advice to take enough rest days and crashed themselves. So no, we don't know how much, if any, exercise is safe but we do have pretty good...
  18. Ravn

    New Zealand Video: Exercise and ME/CFS, 2020, Lyn Hodges

    Yeah I didn't mean repeating the same studies that have already been done repeatedly. More that going forward - say looking at motor unit recruitment - they should do so in a coordinated fashion so as to maximise the results they each get from their 10 or so participants.
  19. Ravn

    New Zealand Video: Exercise and ME/CFS, 2020, Lyn Hodges

    I can kind of see that knowing how hard and often you can exercise could be useful for people with very mild ME who wish to exercise for general health without risk of crashing. Though I suspect they don't need an exercise prescription so much as a rest-between-exercise prescription, pacing in...
  20. Ravn

    News from Australia

    Pretty good piece. Nothing much new (to us) in what Heidi and Sue say but they both come across well. Ken Walder's section (starting 11:50) was brief but interesting. They're going to use white blood cells to create stem cells and turn those into a brain-in-a-dish (neurons & astrocytes) and...
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