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  1. Lucibee

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    Here's the ISRCTN registry entry for MAGENTA - https://www.isrctn.com/ISRCTN23962803
  2. Lucibee

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    I can't find anything registered in ISRCTN. I guess that's a good thing? :/ eta: But then, there's always FITNET... https://www.isrctn.com/ISRCTN18020851 ... it might be a way they are flying under the radar.
  3. Lucibee

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    The study page is here: https://www.rcpch.ac.uk/work-we-do/bpsu/study-severe-chronic-fatigue-syndrome-myalgic-encephalitis-cfsme just looking at it now... Found it! https://pubmed.ncbi.nlm.nih.gov/36456114/
  4. Lucibee

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    All the ethics approval letters are also here: https://www.bristol.ac.uk/academic-child-health/research/research/cfsme/magenta/magenta-trial/ethics/ Rubber stamped by the HRA.
  5. Lucibee

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    Here are the descriptions of the therapies from the supplementary material provided with the 2019 protocol paper: https://bmjopen.bmj.com/content/6/7/e011255 And as Trish said 5 years ago...
  6. Lucibee

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    It feels like we've been waiting for this trial for at least a decade... (2015ish?). Anyway. I thought it might be useful to tie together a few older threads: MAGENTA (Managed Activity Graded Exercise iN Teenagers and pre-Adolescents) - Esther Crawley...
  7. Lucibee

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I wasn't suggesting saying the opposite... (although if there is persistent/reactivated virus then antivirals may well be helpful to some). It just seems that the press have gone out of their way to get positive quotes about this study, particularly from those who are supported by the patient...
  8. Lucibee

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Likely it's to conserve energy. Fighting against organisms that are trying to hijack your cells to their own ends is an energy intense enterprise. There are good reasons to get rest when the body is going through that onslaught. We have to be very sure that any "central mechanism" is redundant...
  9. Lucibee

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Just seen this Science article about it: https://www.science.org/content/article/sweeping-chronic-fatigue-study-brings-clues-not-clarity-mysterious-syndrome I'm quite concerned by this. It's not a central signaling *problem*. It's a protective mechanism.
  10. Lucibee

    Channel 4 News 19 February 2024: Features Clare Norton, mother of Merryn Crofts

    Also, their FB page: https://www.facebook.com/Channel4News There is also an address and phone number: https://www.channel4.com/corporate/get-in-touch or a webform here: https://www.channel4.com/4viewers/contact-us
  11. Lucibee

    Balancing the value and risk of exercise-based therapy post-COVID-19: a narrative review, 2023, Singh, Chalder et al.

    It looks like something has gone seriously awry with the reference citations. Todd has also spotted it. I suspect he'll have more to say in the morning.
  12. Lucibee

    New book: 'Breaking Free' (PASC: ME and Covid-19)

    Looks like Gez has found it... ...so I did a bit of a google of Janet's therapy company...
  13. Lucibee

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Just had an update email: https://community.cochrane.org/organizational-info/people/central-executive-team/evidence-production-methods-directorate/stakeholder-engagement-high-profile-reviews-pilot-3
  14. Lucibee

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Just had an email update: https://community.cochrane.org/organizational-info/people/central-executive-team/evidence-production-methods-directorate/stakeholder-engagement-high-profile-reviews-pilot-3 (also posted on the page for the IAG for the Cochrane exercise review)
  15. Lucibee

    Review The long-term health outcomes, pathophysiological mechanisms and multidisciplinary management of long COVID 2023

    Update: I've done something. I wrote to Springer Nature Research Integrity dept, and they are going to look into it.
  16. Lucibee

    Review The long-term health outcomes, pathophysiological mechanisms and multidisciplinary management of long COVID 2023

    Just to add: One of the Editors in Chief of the journal - Signal Transduction and Targeted Therapy - is Prof Yu-Quan Wei, who is at the same affil (West China Hospital) as many of the listed authors. https://www.nature.com/sigtrans/editors The corresponding authors are Weimin Li & Chengdi...
  17. Lucibee

    UK Government ME/CFS Delivery Plan consultation

    Reminder that the deadline for the normal online survey is today (4 Oct) at 11.59pm https://www.gov.uk/government/consultations/improving-the-experiences-of-people-with-mecfs-interim-delivery-plan
  18. Lucibee

    Dr. Anthony Fauci on Long Covid and ME/CFS

    Hmmm... methinks Fauci is trying to rewrite history somewhat. Or maybe, not so much rewrite, but establish it - as it is very difficult to find out what he has actually said about ME/CFS in the past. Cort thinks he remembers...
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