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    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.

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Herpesviruses, Endothelial Dysfunction, and ME/CFS

SWAlexander

Senior Member
Messages
2,006
Overview
  • The endothelium, a single layer of epithelial cells, lines the inside of blood vessels and plays a crucial role in various processes such as blood flow control and clotting.
  • Endothelial dysfunction, i.e. impaired function of the endothelium, has been demonstrated both in long COVID and ME/CFS, however there is speculation as to the causes.
  • A recent review hypothesised that persistent herpesvirus infection may contribute to endothelial dysfunction and the persistence of symptoms, such as cognitive dysfunction, in ME/CFS.
  • This hypothesis is bolstered by research showing similar physiological changes, such as reduced tissue perfusion (blood flow), associated with both herpesvirus infection and endothelial dysfunction.
  • Herpesviruses, including Epstein-Barr virus (EBV) and HHV-6, can remain in a latent (inactive) form in cells, with the potential for reactivation.
  • These viruses may cause changes to the endothelium leading to endothelial dysfunction through complex processes involved in latency (becoming inactive), rather than through active infection.
  • The authors advocate for future research to determine whether endothelial cells from individuals with ME/CFS (and controls) are infected with herpesviruses. This could advance our understanding of the disease.
    continue: https://www.meresearch.org.uk/herpesviruses-endothelial-dysfunction-and-me-cfs/
 

SWAlexander

Senior Member
Messages
2,006
wastwater, thanks.
He mentioned the dexamethasone test, which measures cortisol and ACTH levels. I have been advocating for cortisol and ACTH testing since 2021. Gradually, some doctors are beginning to understand its importance. However, the ACTH test is rare in Germany, as most endocrinologists have lost patience with insurance companies, meaning it often requires out-of-pocket payment. Unfortunately, he also promotes vaccination.
 

cfs since 1998

Senior Member
Messages
711
Overview
  • The endothelium, a single layer of epithelial cells, lines the inside of blood vessels and plays a crucial role in various processes such as blood flow control and clotting.
  • Endothelial dysfunction, i.e. impaired function of the endothelium, has been demonstrated both in long COVID and ME/CFS, however there is speculation as to the causes.
  • A recent review hypothesised that persistent herpesvirus infection may contribute to endothelial dysfunction and the persistence of symptoms, such as cognitive dysfunction, in ME/CFS.
  • This hypothesis is bolstered by research showing similar physiological changes, such as reduced tissue perfusion (blood flow), associated with both herpesvirus infection and endothelial dysfunction.
  • Herpesviruses, including Epstein-Barr virus (EBV) and HHV-6, can remain in a latent (inactive) form in cells, with the potential for reactivation.
  • These viruses may cause changes to the endothelium leading to endothelial dysfunction through complex processes involved in latency (becoming inactive), rather than through active infection.
  • The authors advocate for future research to determine whether endothelial cells from individuals with ME/CFS (and controls) are infected with herpesviruses. This could advance our understanding of the disease.
    continue: https://www.meresearch.org.uk/herpesviruses-endothelial-dysfunction-and-me-cfs/
This is a reasonable hypothesis, but I doubt that EBV latency is causing damage only in endothelial cells or that endothelial dysfunction explains ME/CFS 100%. It's a multisystem illness. Dr. Lerner found EBV in his heart...
 

SWAlexander

Senior Member
Messages
2,006
But why does that happen

Herpesviruses, Endothelial Dysfunction, and ME/CFS​

https://www.meresearch.org.uk/herpesviruses-endothelial-dysfunction-and-me-cfs/

There are other reasons. Glanzmann thrombasthenia is an inherited disorder of platelet aggregation. The application of molecular biology to the study of platelet disorders has identified defects in other collagen receptors, ADP receptors and TXA2 receptors. https://pubmed.ncbi.nlm.nih.gov/19691478/

I've been researching for a while now because I've been experiencing some issues myself. I'll share what I find.
 

cfs since 1998

Senior Member
Messages
711

heapsreal

iherb 10% discount code OPA989,
Messages
10,175
Location
australia (brisbane)
Yes but again, why only in some people

Probably alot to do with subgroups of pts with cfs. There's no one test that can diagnose cfs but it's very possible that cfs are many conditions with an unknown cause.

It's like when people get ebv infection and they feel sick, tired etc etc and 6 weeks later they are fine. But others can feel sick for years or decades or forever.

It reminds me of a comment someone made here a few years back comparing cfs to cancer. That is cancer is a broad term, one could have skin cancer and someone else breastfeeding cancer. We don't treat skin cancer with breastfeeding cancer drugs.

Maybe in the future they will subgroup cfs in ebv/cfs, hhv6/cfs, mycoplasma cfs or autonomic dysfunction/cfs etc etc. Once we can subgroup cfs pts, we might be able to do more effective studies and more effective treatments 🤞🙏
 

SWAlexander

Senior Member
Messages
2,006
Lerner's experience with valayclovir
I’m not sure. Maybe he detected orthostatic hypotension, which is often the case during viral outbreaks affecting kidney function.
Valacyclovir is used for herpes, especially during a shingles outbreak. However, if herpes could be cured, we would not have shingles later.
Fludrocortisone, a synthetic mineralocorticoid, treats Addison's disease, like in my case, and is accompanied by OH. To manage OH, the first line of defense includes increasing fluid and salt intake and using venous compression methods.
 

Oliver3

Senior Member
Messages
923

Herpesviruses, Endothelial Dysfunction, and ME/CFS​

https://www.meresearch.org.uk/herpesviruses-endothelial-dysfunction-and-me-cfs/

There are other reasons. Glanzmann thrombasthenia is an inherited disorder of platelet aggregation. The application of molecular biology to the study of platelet disorders has identified defects in other collagen receptors, ADP receptors and TXA2 receptors. https://pubmed.ncbi.nlm.nih.gov/19691478/

I've been researching for a while now because I've been experiencing some issues myself. I'll share what I find.
I think you're right in the collagen deficit Dept and the platelet thing.
There's definitely smthg in common between eds and all these connective tissue/ ebv diseases
 

SWAlexander

Senior Member
Messages
2,006
connective tissue/ ebv diseases
Since a friend suddenly developed Sjögren's-related symptoms, I’ve been trying to find a connection to connective tissue and identify what autoimmune diseases, besides lupus, affect mast cells. Through my reading and writing on the subject, I’ve discovered that not many doctors are aware of this connection, and as a result, they are often hesitant to test for or diagnose these conditions.
https://swaresearch.blogspot.com/2024/07/sjogrens-syndrome-understanding-worst.html
 

Oliver3

Senior Member
Messages
923
Since a friend suddenly developed Sjögren's-related symptoms, I’ve been trying to find a connection to connective tissue and identify what autoimmune diseases, besides lupus, affect mast cells. Through my reading and writing on the subject, I’ve discovered that not many doctors are aware of this connection, and as a result, they are often hesitant to test for or diagnose these conditions.
https://swaresearch.blogspot.com/2024/07/sjogrens-syndrome-understanding-worst.html
It's crazy how the sufferers have made the connection! All those diseases ( fibro, lymes, sjorgrens m.e etc) have eds overlap in my experience.
For me there is probably a much bigger picture that we're not looking at which is phenotypical connective tissue tribes.
Basically the RCCCX theory . It's just too persuasive.
It doesn't make sense just to say viruses like ebv just randomly reactivate in some but not others. There's got to be a reason and a ground zero and I think it just lies in our tissue type
Everything else unfurls from there.
 
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