I think there could be a way to improve the body by repairing what is not functioning well or has been damaged. There are mechanisms behind the symptoms popping up. There’s benefits to coping methods and rehab, but it has to be tailored to each case as what may be beneficial or not have any effect, may be devastating and detrimental in others. These are conditions that need medical care and management, and things like brain training in my opinion won’t resolve those bodily issues. So biomedical treatments, multi-disciplinary care teams, mental health support and social/community support (which includes way better public health practices in care and community settings). Really great episode. One hundred times better than anything so many outlets have put out there!
I’ve been struggling for 18 months and I appreciate the content of the show and the intent to push research and recovery stories. I recently saw a poll for preferred content…. And I wonder if you’ve ever polled… A. LC sufferer B. LC recovered C. LC curious D. LC changed forever (Or whatever to gauge viewers) C. Etc…
Thanks to you both! I'm fully confident there's viral persistence in the gut, for me at least. Fully recovered for a year. It all started up again after getting food poisoning. 8 months later, almost recovered again, a probiotic sent me back into the depths of LC hell. I've been spending the past month stuck in fight or flight, high hr, tensed up, manually breathing almost around the clock.
really valuable, I appreciate this perspective! As someone who often feels like I am not good enough or doing enough or not doing it perfectly this is I think just another part of the whole conversation
Yes, yes, yes! Thanks so much for that interesting podcast and sharing so much about your story, Sophie. I rarely have heard anything more valid and crucial from the patient-experts perspective. I am myself a long time practitioner of the ethical and meditative Buddhist path and I also find the neuro narratives that are told around "autonomic conditioning" weird, and the expectations to cure ME with this alone totally wrong. I don't agree with your perspectives on research findings into the pathomechanism though. I understand that it has been pretty well researched by now whether there is some ongoing Covid inflammation that causes Long Covid and the theory couldn't be further substantiated. There is however more and more proof of EBV and HHV-6b reactivation in ME/CFS and Long Covid with PEM. An atypical, yet unknown smoldering episodic reactivation of these viruses is hypothesized as the pathomechanism of ME/CFS and Long Covid with PEM. Bhupesh Prusty, Jacqueline Cliff and Eliana Lacerda are the leading researchers into this hypothesis. With their small prospective studies they can explain the damage to the mitochondria, the immune system and found prove of HHV-6b brain inflammation. And just a couple of days ago a team around Jean Nunes from South Africa has hypothesized a connection between endothelial cell damage and herpes reactivation in ME/CFS. There is a summary on health rising from August 5 2024. Check it out!
Hey, thanks for the kind words. While there does seem to be ongoing viral persistence of SARS2, I wasn’t trying to imply that this is the definitive cause of why all of us are so sick; I don’t believe that has been solved yet. I’m sure herpesviruses are involved for a lot of people too & my results have suggested some kind of EBV reactivation. (I’m only positive for EBV & HHV-1)
@@sophsoph_psd Hi Sophie, I looked up what you say about SARS2 persistence in Long Covid and I realised that there is indeed proof of that. However, it could be shown only for a special group of patients who had all died from a COVID-19 infection directly. Sometimes their infections went on for over a year due to immunodeficiency. (I have it from a summary by the ME Association: "ME/CFS and Long Covid - are they the same condition?" that was published 2023/05) Since you were wearing an ME/CFS shirt when talking to Harry - I appreciate the solidarity! I have ME since 2017 from an unclear trigger - I thought that you were talking of the pathomechanism of ME and ME-type Long Covid. I think that it is really important that we begin to think about how we can more clearly tell apart the different groups of Long Covid. I can understand that people affected of LC stick to that concept because it's so well known and it includes everyone who has health problems in the wake of a covid infection and that's an act of natural solidarity. And it's beautiful. At the same time I don't see what's the use of not telling a group like the above who died from chronic COVID-19 infection apart from ME-type Long Covid. Because it's confusing and - I am sure you understand - my fear is that confusion sweeps over from Long Covid to ME again. And especially because there were no clear accepted defintions for ME/CFS for decades it was possible that the situation turned out to be such a tragedy for several generations of ME patients. But I also can't really see any benefit for the Long Covid Community in the long run. Rather the opposite. As long that there are these blurred criteria for Long Covid the Long Covid research won't get anywhere, because there are different syndromes under one hat. For some time I was envious that Long Covid had so much more public attention. Now I realise that it is actually good that ME/CFS as a syndrome is well defined at last and excellent research is going through the roof. And I don't see the same happening for Long Covid.
