• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Endothelial Dysfunction in ME

Messages
600
The kidney function 'renin paradox' is interesting, I haven't heard about that but they way they write about it sounds like its a confirmed feature of CFS ? the rest seems mostly speculation, are they doing any experiments or is it all theory ?
Its a bit speculative but i think most other mecfs theories are quite speculative as well. I think there is some evidence in support of the ideas here but nothing huge. For example Petter et al 2022 found higher sodium in muscles, so they are doing some experiments on this. I think they said they had unpublished results regarding some of the relevant ion channels at play here as well. And there has been evidence of increased sympathetic activation in mecfs and autoantibodies to beta adr receptors. There is more you could throw in here as well that is relevant but i will leave it at that.

The problem with some of the research is that all of it is not consistent. For example multiple studies have found mitochondrial dysfunction but now the NIH intramural study found normal energy usage in the metabolic chamber. So everything is confusing.
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
New from Wirth, Lohn. They are convinced about whats going on they say.
Are they really convinced, or are they just making claims to get more funding? Does the GET/CBT brigade really believe in their theory or are they just very desperate to avoid admitting they were wrong? Researchers do have conflicts of interest; they're not all dedicated to absolute truth. Some self-delude themselves by getting excited about some finding or hypothesis, which then blinds themselves to counterevidence.

If ME was due to endothelial dysfunction, I would expect more reports of success with endothelial-modifying treatments, and more correlation between symptom severity and heart rate. Vigorous physical exertion changes my blood flow, but doesn't change the severity of my symptoms. While endothelial dysfunction might possibly explain a few of ME's symptoms, that doesn't mean that it is a perfect match for explaining all symptoms and responses. Do cuminaldehyde, prednisone, and T2 all have endothelial-altering effects that could trigger rapid full temporary remission, followed by rapid return to the ME state?
 
Messages
600
People improve from a wide range of things according to anecdotes. It will be hard to fit all that into one narrative, so maybe there are subgroups. I can list like a dozen things at least other than cuminaldehyde that improved someone.
 

Tsukareta

Senior Member
Messages
150
Are they really convinced, or are they just making claims to get more funding? Does the GET/CBT brigade really believe in their theory or are they just very desperate to avoid admitting they were wrong? Researchers do have conflicts of interest; they're not all dedicated to absolute truth. Some self-delude themselves by getting excited about some finding or hypothesis, which then blinds themselves to counterevidence.

If ME was due to endothelial dysfunction, I would expect more reports of success with endothelial-modifying treatments, and more correlation between symptom severity and heart rate. Vigorous physical exertion changes my blood flow, but doesn't change the severity of my symptoms. While endothelial dysfunction might possibly explain a few of ME's symptoms, that doesn't mean that it is a perfect match for explaining all symptoms and responses. Do cuminaldehyde, prednisone, and T2 all have endothelial-altering effects that could trigger rapid full temporary remission, followed by rapid return to the ME state?
Also there was a big thing about microclots last year, many people with CFS probably tried stuff thats supposed to help prevent that like grape seed extract nattokinase ( I tried those 2 ) and it didn't make much difference. I think I do get a benefit from it at the moment but my situation is unusual, as a facet of PEM my fingers went cold and yellowish and my thumb actually went numb which never usually happens, had muscle pains in the chest / shoulder area especially when I wore my respirator to enter my moldy house ( oxygen deprivation ). When I tried those supplements more extensively last autumn ( when I was in better health and didn't have MCS, food allergies, extreme exercise intolerance / sore muscles ), it didn't seem to make any difference.