• 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.

Tissue specific signature of HHV-6 infection in ME/CFS (Bhupesh Prusty)

Murph

:)
Messages
1,799
I really feel like we were sold a bill of goods with the "nanoneedle". We were told it would identify what is the problem in the blood, and, years later, have never gotten a convincing explanation for why it just disappeared.
The guy in charge of it, Rahim Efsandyarpour, got offered a lab of his own at the university of california and left stanford.
https://faculty.sites.uci.edu/esfandyarpourlab/

Ultimately I think the mistake is Ron's. He bet on a unique bespoke system instead of a cheap mass-market system. It turned out to be unreliable, have key-person-risk and not be replicable by other labs. Was it a waste of money or a decent thing to try, ex-ante? i don't know but in retrospect it may have been better to use a boring old system anyone can buy from a big pharma company.

Ron is fallible; Ron is optimistic. These should be obvious but we prbably didn't have space to admit it before. The good news is since long covid the field overall has much less key person risk - there's lots of researchers now, not just Ron and a few others.
 

Oliver3

Senior Member
Messages
869
I always feel the need to defend Ron in these circumstances although, murph, I think that's a reasonable personal view of ron I have no idea how accurate.
But knowing other people in their late 70s early 80s , the fact that he has done anything amazes me.
He's been and still is a beacon of hope for me and this is a learning curve for everyone.
I'm sure Ron himself is glad that the field is opening up.
Ron is optimistic and fallible. No one's perfect but I thank God he's around
 
Messages
14
I think he said that most antiviral drugs work by denying viral DNA replication. But since the virus is latent in mecfs there is no replication going on and thus regular anti virals wont work. Need a new mechanism.
He meant in the article reactivation but localized in the tissues. there is also an opinion of scientists that the so-called incomplete reactivation (replication of the DNA of the virus in blood cells not in plasma) can also be characteristic of cfs.

And sure if you use nucleoside drugs, cellular and viral kinases are needed for successful phosphorylation of them. the more the virus replicates, the more kinases we get and the more effective is the drug. So for the effectiveness of such drugs adjuvants are needed that activate the virus, forcing it to replicate. In this role can be used interferons, low (stimulating) doses of immunoglobulin, other immune stimulants.