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  1. Grigor

    Unevidenced recommendations of brain retraining in Bateman Horne Centers clinical guide for ME and longcovid

    As a patient rep working closely with biomedical researchers here in the Netherlands, I can confidently say they do see signs of real damage in the body and the findings align with what we see elsewhere. Yes, it's preliminary, for the moment unpublished, and the research is still developing...
  2. Grigor

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    As a patient rep working closely with biomedical researchers here in the Netherlands, I can confidently say they do see signs of real damage in the body and the findings align with what we see elsewhere. Yes, it's preliminary, for the moment unpublished, and the research is still developing...
  3. Grigor

    Unevidenced recommendations of brain retraining in Bateman Horne Centers clinical guide for ME and longcovid

    My response:
  4. Grigor

    Unevidenced recommendations of brain retraining in Bateman Horne Centers clinical guide for ME and longcovid

    Bateman Horne Center replied both on my Facebook page and on X. It was addressed to @MittEremltage. Read their full response here.
  5. Grigor

    Unevidenced recommendations of brain retraining in Bateman Horne Centers clinical guide for ME and longcovid

    I wrote a post about it on Facebook: https://m.facebook.com/story.php?story_fbid=pfbid02ueSs9o5xK9VzwcyWHzRy8DfBARbmjDtLgpiikNZMACRHbwaDbojiXFkT6kGYmRFAl&id=100061511663193
  6. Grigor

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

    https://www.healthrising.org/blog/2025/06/15/craniocervical-instability-chronic-fatigue-syndrome/
  7. Grigor

    Cerebrospinal fluid immune phenotyping reveals distinct immunotypes of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Bastos et al

    "Did a Lab Study Just Uncover a Craniocervical Instability Subset in ME/CFS?" https://www.healthrising.org/blog/2025/06/15/craniocervical-instability-chronic-fatigue-syndrome/ By Cort Johnson.
  8. Grigor

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    Ah I understand. Yes, true.
  9. Grigor

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    Yes, but that's from 2018. She mentioned it maybe last year the year before.
  10. Grigor

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    Can't find her tweet, but she mentioned she feels she might have or has. At least hEDS.
  11. Grigor

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    One of the authors has posted it on x with the reasons why they wrote it.
  12. Grigor

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    I agree with this. Gillette was also criticized by Peul for not publishing anything about the surgeries. Gillette said we need to treat people as they're suffering and hasn't published anything useful. Answer Gilete https://archive.is/ ifU5A
  13. Grigor

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    I can't answer your question of course but these authors explain it as such: "Unfortunately, the diagnosis of EDS hypermobile type is based purely on clinical symptoms and signs because no genetic marker currently exists.3 There is a simple clinical screening test (4 or greater on the Beighton...
  14. Grigor

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    Assuming something is happening during or after the surgeries, I wonder if certain drugs—like dexamethasone, which some surgeons such as Gillette reportedly use—might partly explain why some people experience improvements. This drug was also used during the COVID-19 pandemic to treat...
  15. Grigor

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    "Perhaps the most compelling evidence that at least a subset of ME/CFS cases are directly caused by brainstem deformation come from a set of well-documented case studies." But then they go on about JW and JB as they've recovered, but that's not the most compelling evidence? How do they know it...
  16. Grigor

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    I believe she is and I'm quite scared how many people will go on to have surgery after that...
  17. Grigor

    News from The Netherlands

    Ernst Jurgens is part of the guidelines committee for ME. So along side Hans Knoop en Jos van der Meer etc. And he's not a push over so. Hopeful stuff!
  18. Grigor

    News from The Netherlands

    I wrote about Sanne Nijhof and Elise van de Putte as well. The full quote was this though. She tried to do an Esther Crawley by making a comparison with anti-vaxxers. They were working together on FITNET-NHS at the time. Pretty cheap...
  19. Grigor

    MAGENTA (Managed Activity Graded Exercise iN Teenagers and pre-Adolescents) - Esther Crawley

    Does anyone know who filed this complaint? I wonder if Crawley's departure has something to do with the fact that MAGENTA did show harm in the end? As well as FITNET-NHS of course. Is it possible to find out via a FOI request?
  20. Grigor

    News from The Netherlands

    Ernst Jurgens, occupational physician and medical biologist, on the Dutch FITNET study.
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