Search results

  1. D

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    I'm sorry. How did you decide you'd HHV6 and EBV reactivation? I'm not disputing this; I'm asking to the metric. Why I'm asking is because I distrust current standards across many infections. I respect your interpretation.
  2. D

    Do you believe that “viral persistence” is the cause of ongoing MECFS and LC?

    With immune tolerance, in theory, virus can persist without producing antibodies, so it's only through PCR or direct culture that we can "see" them, and if they're recused in reservoirs hard to access - like brain tissue -persistence can be difficult to demonstrate.
  3. D

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Btw, I am aware he is making this our fight, and am relieved and empowered that we have members far smarter than I that are willing to take him square on and highlight the holes in his specious "theory". I just think we should be responding to him with "Hey, kid, you're in the wrong class" as well.
  4. D

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Understood. And well done. I'm just suggesting this shouldn't have to be our fight. We have many symptoms. One of my worst is balance. This can be objectively tested for. Fine. But there are others that cannot. Walitt is making a case based on one claim that he really is making, while...
  5. D

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I'm not sure that is our main argument. I think that's what Walitt appears so eager to disprove. I think our main argument is we are too sick with too many persistent symptoms to have any meaningful QoL, and to engage in any substantive effort for too long without having to stop because of...
  6. D

    NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

    I fear that resolution to the contested disease debacle must be political. That means, probably, something bipartisan. There really isn't much of bipartisan going around in the US these days. If there were, it likely wouldn't flow in our direction. We may have to build a better mouse trap, but...
  7. D

    NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

    @Dakota15 , I'm sorry, I don't know which group you're affiliated with. Do you work with Jamie Selzter? Sorry, my memory is not good. But I'm thinking I want to try to contribute something to the national cause, more politically, while I may still be able. When we were healthy, way back when...
  8. D

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    I think this is an appealing idea. I don't think it will apply to cognitive/emotion/focus-based PEM, though. Still cool to try.
  9. D

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    I still want to rail. Especially when inserting ideology into the mix. Ideologies come and go, though. This is sustained bullshit that has endured scores of years, and spanned countries and continents. I'm not sure what the constant is beyond sick people being mischaracterized and ostracized...
  10. D

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    This is intriguing. One point, however: channelopathies can also manifest with delays.
  11. D

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    I worry that this is a top down phenomenon, one with many points of influence. I think it predates Wallit,, that he is a downstream ripple, a means to an end, much as the BPS school is. Someone years ago suggested the way out of this morass would be through political leverage. Maybe so. In...
  12. D

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    Oh dear. If there are persistent foreign antigens at play, then no, this argument cannot be right. This seems to me more dangerous than wishful thinking. ETA: They'd have to demonstrate an agnostic antigen, one common to groups of people, self-generated, but not a remnant or debris from the...
  13. D

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    To me this feels like a contrived forced fit. It reads like that. The logic feels like that. The entire Wallit thing doesn't fit. They jammed this thing in. So why force it now when the spot light is on? Well, it could be Stupid and greed and culture. They seem to be present everywhere in...
  14. D

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    Fair. But looking at how they initially approached the study (2015/2016?), in conjunction with the cluster-fuck end product, may suggest they had a pretty good idea of where they wanted to go. Oh, I don't think it's going to be limited to just one patient community.
  15. D

    Havana Syndrome: U.S. and Canadian diplomats targeted with possible weapon causing brain injury and neurological symptoms

    Mass hysteria? Made sense to me given the roots of the NIH coupled with how it's handled other contested conditions. Maybe they'll call in the interoceptive team to ramrod an investigation.
  16. D

    The causes that aren't genetic or pathogenic

    I think immune tolerance will eventually be shown to play a role, but that is tied into pathogens (e.g. latent viruses). This is a theory that seems to have morphed from just pregnancy and infants being born with it. I've been trying to get my arms around it, but having difficulty. It could...
  17. D

    The Spread of Ticks and TBDs: Nudging Nature?

    https://krisnewby.substack.com/p/the-rise-of-the-lone-star-tick "During the last half-century, lone star ticks have rapidly spread from their original territory in the Southeastern U.S. While some researchers attribute this to climate change and shifting land-use patterns [1], I propose that...
  18. D

    The NIH should create an Office of Infection-Associated Chronic Illness Research - proposed by the American Association of Scientists, 2024.

    Chronic Lyme seems out of place in so much as there has been an ongoing NIH clinical study into it since 1999 or there abouts. That's a quarter of a century of supposed parsing. So it's - on paper - clearly been investigated at length. Which suggests it's stalled at best, or become political...
Back
Top Bottom