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  1. MSEsperanza

    Psychology Today: A Revolution Is Happening in Psychology. Here's How It's Playing Out

    https://statmodeling.stat.columbia.edu/2016/01/05/pace-study-and-the-lancet-journal-reputation-is-a-two-way-street/ There are also some forum threads on Gelman or mentioning him.
  2. MSEsperanza

    Request for help with possible TV documentary on ME

    https://www.s4me.info/threads/my-robot-makes-me-feel-like-i-havent-been-forgotten.5552/ (which isn't suitable for the very severely affected, though)
  3. MSEsperanza

    May 2019 - Awareness Week including Millions Missing

    Don't know where to put this, so I leave it here: I want to thank all who were and are busy with all the highly relevant things currently happening--the ME awareness week, the media coverage and recovering from attending May 12th events, plus dealing with the newly released PACE trial data...
  4. MSEsperanza

    Building an evidence base for management of severe ME (including sleep management)

    Deleted one of my previous muddled posts. Apologies. What I wanted to say in this post was that, from my experience as well as from what people in other threads wrote, many of us struggle with (temporary) severe cognitive impairments that aren't assessed properly. In my case, I can increase...
  5. MSEsperanza

    Building an evidence base for management of severe ME (including sleep management)

    My last point on this for now: To not harm severely affected with experiments, do we have any evidence with regard to sleep regulation and other symptoms management from homecare/ palliative care in other illnesses such as MS that could be applied to ME?
  6. MSEsperanza

    Building an evidence base for management of severe ME (including sleep management)

    In general, I think to not misunderstand Jonathan‘s idea it‘s important to be aware that he is interested to find out what helps and that he doesn‘t make assumptions. Some of us who are living decades with certain illness patterns might feel offended when somebody wants to investigate such...
  7. MSEsperanza

    Building an evidence base for management of severe ME (including sleep management)

    So do I but as I am planning to have a longer forum break, I'll leave some preliminary thoughts here. Apologies if some thoughts might be off topic. I never experienced severe phases or prolonged PEM lasting longer than several weeks. I just thought that perhaps there are some general...
  8. MSEsperanza

    Building an evidence base for management of severe ME (including sleep management)

    I'm too slow for this thread, so repost and amend what I added when you already had answerd my post: I'm not bedbound, and despite having an ME diagnosis am increasingly unsure if I have ME at all, but my experience is that going to bed and raise within a fixed time window [edit:] seems to help...
  9. MSEsperanza

    Building an evidence base for management of severe ME (including sleep management)

    But over how many days would you think one would have to follow a sleep routine to have sufficient evidence whether it helps or does harm? edited to add: for me I think it helps, but I'm not bedbound. And sometimes I have to lie down again shortly after I got out of bed. I also have several...
  10. MSEsperanza

    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    "The amendment will not include a full update, but a decision about this will made subsequently.'" https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/information#whatsNew
  11. MSEsperanza

    May 2019 - Awareness Week including Millions Missing

    The Free State of Bavaria's public service broadcasting, BR : Möglicher Bluttest für Chronisches Fatigue Syndrom, BR24, 06.05.2019, by Yvonne Maier, https://www.br.de/nachrichten/wissen/moeglicher-bluttest-fuer-chronisches-fatigue-syndrom-me-cfs,RPgmUEL Potential blood test for Chronic Fatigue...
  12. MSEsperanza

    May 2019 - Awareness Week including Millions Missing

    In Germany, the media coverage of ME has hugely improved since the "Deutsche Gesellschaft für ME/CFS" entered the stage. Even though it seems to me the DG generally tend to over-interpret the findings of biomedical research--now the nanoneedle results--, and journalists appear to be happy with...
  13. MSEsperanza

    Myalgia and CFS following immunization: macrophagic myofasciitis and animal studies support linkage to aluminum adjuvant persistency, 2019, Gheradi

    Hm, I find the abstract very confusing. I understood the paper's authors (or other researchers?) first tested their hypothesis on small animals? These studies have revolutionized the knowledge about aluminium toxicology (or toxicity?) in general? Now they have tested their hypothesis on sheep...
  14. MSEsperanza

    Hand grip strength as a clinical biomarker for ME/CFS, 2018, Nacul et al

    Wondering if it's possible to replicate this study by including this seemingly very simple test in as many trials on ME as possible? E.g. to compare the results of the handgrip test at both days of the 2-day CPET? (Could it measure PEM?)
  15. MSEsperanza

    A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

    I made the mistake to search a SW quote I remember I found most telling -- stating that it's irrelvant to distinguish whether people actually have ME or have the belief of having ME.*) Couldn't find it. (@chrisb ?) Instead I faced the abundance of SW's inconsistent quotes (not all of them...
  16. MSEsperanza

    A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

    Not necessarily in my opinion. The way the investigators report and promote the results seems to be problematic though.
  17. MSEsperanza

    A nanoelectronics-blood-based diagnostic biomarker for ME/CFS (2019) Esfandyarpour, Davis et al

    The most exciting news for me was to see Chris Ponting as the first expert on the SMC website. Also, his critque seems to be the most relevant. Is he also being quoted in the media coverage? It's a pity the Stanford press release didn't do better. "Biomarker for chronic fatigue syndrome...
  18. MSEsperanza

    David Tuller crowdfund: Trial By Error: Reporting on ME/CFS and Related Controversies

    Don't know either. I guess this is going to get rather thrilling either way due to the reasons others wrote before. Hopefully, Berkley's crowdfunding website won't break down on April 30th. ;) I could only spare a very tiny contribution and split that up between an even tinier amount via the...
  19. MSEsperanza

    David Tuller On Exposing the Bad Science Behind the Biopsychosocial Effort to Define ME/CFS (Cort Johnson, HealthRising)

    I would like to see a similiar piece, perhaps with shorter questions, in the New York Times or the Guardian.
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