-
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.
ME/CFS is:insult->bodywide microvascular insult->hypoxia->tissue damage and epigenetic alterations.
- Thread starter bread.
- Start date
Reading_Steiner
Senior Member
- Messages
- 245
I'm trying to think how this all fits together... autoantibodies + HHV6 + CDR + mito fragment etc etc.
CDMRP Grants Power New Muscle and Mestinon Studies in ME/CFS
" Systrom believes that damage to the small nerve fibers (e.g. a small fiber neuropathy/polyneuropathy) is failing to constrict the blood vessels, allowing blood to escape into the interstitial spaces. "
This makes some sense to me actually, because it would seem to provide an explanation as to why some of us seem to sometimes benefit from the cold ( I used to go out a lot at night on my mobility scooter for example ).
I have experienced something that I never noticed when I was healthy which is noticeable variations in the perceptibility and phasing of the heart beat ( the time lag between both contractions of each side ), and its perceptibility ... sometimes its rapid and strong / hard to ignore ( at rest ), sometimes its slow and unfeelable which I would consider normal. I would describe one of these modes as 'shallow' heartbeat, which feels like its not being very efficient and the pressure changes in the body are lessened.
I usually just ignore this though as it isn't tied into any sort of scientific explanation.
I had experienced this just this morning before I went to bed... it made me need to lie down. but it felt different to orthostatic intolerance or POTS...it was neither, as I usually feel those in the brain, not the chest / whole body. So I think there might really be something going on with circulation, even at times when we don't feel particularly orthostatic intolerant.
CDMRP Grants Power New Muscle and Mestinon Studies in ME/CFS
" Systrom believes that damage to the small nerve fibers (e.g. a small fiber neuropathy/polyneuropathy) is failing to constrict the blood vessels, allowing blood to escape into the interstitial spaces. "
This makes some sense to me actually, because it would seem to provide an explanation as to why some of us seem to sometimes benefit from the cold ( I used to go out a lot at night on my mobility scooter for example ).
I have experienced something that I never noticed when I was healthy which is noticeable variations in the perceptibility and phasing of the heart beat ( the time lag between both contractions of each side ), and its perceptibility ... sometimes its rapid and strong / hard to ignore ( at rest ), sometimes its slow and unfeelable which I would consider normal. I would describe one of these modes as 'shallow' heartbeat, which feels like its not being very efficient and the pressure changes in the body are lessened.
I usually just ignore this though as it isn't tied into any sort of scientific explanation.
I had experienced this just this morning before I went to bed... it made me need to lie down. but it felt different to orthostatic intolerance or POTS...it was neither, as I usually feel those in the brain, not the chest / whole body. So I think there might really be something going on with circulation, even at times when we don't feel particularly orthostatic intolerant.
- Messages
- 89
Could be. What about the few that recovers?
- Messages
- 19
+ nervous system involvement and metabolic pathway alterations
Rufous McKinney
Senior Member
- Messages
- 13,385
It seems like an issue for us is- the interminable amounts of time passing while we wait for something to give.
In the Cort Johnson article, it mentions this:
"Even publication of a successful placebo-controlled, double-blinded trial could open the door for physicians across the U.S. and the world to prescribe it. It would take more studies to get insurance companies to pay for it, but a successful study would open the door to those studies."
So what requires that AFTER publishing a successful trial...we then must wait again for " insurance companies to..pay for it".
With COVID-19, we've seen an effort to speed up approval of these new vaccines. Whether that is good or bad can be debated. How do we get these processes to move more rapidly?