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  1. Grigor

    The symptom signaling theory of ME/CFS involving neurons and their synapses

    I agree that the brain is also heavily involved as well, maybe even primarily, that's not really the point, but I think it's premature to state that patients are experiencing an increase in symptoms with no driving pathology for example in the muscles. In my opinion we're really scratching the...
  2. Grigor

    The symptom signaling theory of ME/CFS involving neurons and their synapses

    I understand what you're saying. The build up of pathology is of course true, but that also depends on if you know what you have to measure. We don't especially know that in ME, so that it may seem as if there isn't any build up of pathology. But once we do understand what happening there may...
  3. Grigor

    The symptom signaling theory of ME/CFS involving neurons and their synapses

    I don't know if there is, but I can imagine that when there is more support and recognition that it might also improve their overall QOL and experience with the disease as well. I'm sure if the other mentioned diseases would be treated like people with ME they would score a lot worse as well.
  4. Grigor

    ME/CVS Nederland (Netherlands)

    It used to be ME/CVS Stichting, but they're now ME/CVS Nederland.
  5. Grigor

    The symptom signaling theory of ME/CFS involving neurons and their synapses

    It's unpublished data by Slaghekke et al. It's being discussed here: Slaghekke: Wüst:
  6. Grigor

    The symptom signaling theory of ME/CFS involving neurons and their synapses

    While I like the role of the synapses described in this theory and appreciate this write up and exercise, I personally think we know too little about ME and the importance of the findings to come to these conclusions. Some of the findings are also too much minimized that is in my opinion...
  7. Grigor

    ME/CVS Nederland (Netherlands)

    Yeah, they have worked with BPS CBT researchers before, and although she's now a project leader of a biomedical consortium via the ZonMw program, they're also working with prof. Judith Rosmalen. She's vice president of the EAPM. Not all they do is problematic, but they're definitely prone to...
  8. Grigor

    Interferons as mediators in ME/CFS

    I have no knowledge of interferon whatsoever ;), but it reminded me of Dutch researcher Marjan Versnel. She's new to the field and she's been studying Sjörgen and also IFN-I and she will be studying it in ME as well. I will send her this thread. Maybe she's interested in joining the discussion...
  9. Grigor

    Severe ME Day, August 8 2025 and and Severe ME week

    I made a short video. I was quite brainfogged so I forgot several words. Best to follow the subtitles as well I guess.
  10. Grigor

    Metabolic adaptation and fragility in healthy 3-D in vitro skeletal muscle tissues exposed to [CFS] and Long COVID-19 sera, 2025, Mughal+

    Both the lead as well as the senior author responded to my post on LinkedIn and so did Rob Wüst. If I understand correctly Rob Wüst and Jeroen den Dunnen are trying to (partly) replicate the findings...
  11. Grigor

    Protocol Comparison of telemedicine-assisted psychotherapy, exercise therapy, or a combination of both in [Long Covid]…, 2025, Beyer+

    I guess they're referring to these that @Mark Vink analyzed. https://crimsonpublishers.com/rism/pdf/RISM.000748.pdf
  12. Grigor

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

    I wrote the following to them: They responded: I obviously feel they could better leave the whole biomechanical considerations part out, but I doubt they'll do that...
  13. Grigor

    NL: UWV Dutch Employee Insurance Agency ao disability

    It's just additional as not everyone (maybe most?) are not able to do these tests. The thing is they would often be dismissed all together, but after this ruling they have to be taken into account as well. But indeed they're not a requirement.
  14. Grigor

    NL: UWV Dutch Employee Insurance Agency ao disability

    I'm quite crashed from yesterday so I haven't read the blog again, but if I remember correctly most of the criticism is about the validity of POTS. At the end of the article I believe there was suggested to look at cerebral blood flow reduction instead of POTS and a link to an article by Van...
  15. Grigor

    NL: UWV Dutch Employee Insurance Agency ao disability

    I'm definitely aware of the issues with the 2-day CPET, but less so with the concerns around tilt table testing. Honestly, I think @ME/CFS Skeptic is overal a lot better informed about both the tests and the UWV situation.
  16. Grigor

    NL: UWV Dutch Employee Insurance Agency ao disability

    Historic victory for ME patients in the Netherlands! After a long legal fight, the Dutch Employee Insurance Agency (UWV) must now accept scientific methods and tests like a CPET and tilt table tests that prove the disability of ME — a turning point for thousands seeking recognition and...
  17. Grigor

    NL: UWV Dutch Employee Insurance Agency ao disability

    Good question, for those patients it will be harder if it's only based on criteria.
  18. Grigor

    News from The Netherlands

    For more on this go to this thread Historic victory for ME patients in the Netherlands! After a long legal fight, the Dutch Employee Insurance Agency (UWV) must now accept scientific methods and tests like a CPET and tilt table tests that prove the disability of ME — a turning point for...
  19. Grigor

    Brain and muscle chemistry in ME/CFS and long COVID: a 7T magnetic resonance spectroscopy study, 2025, Godlewska et al

    So what about the difference between ME and LC. Could that also just be down to duration? Not sure if they controlled for that? I mean 112.5 months vs 15.3?
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