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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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MS reversed by transplanted immune cells that fight Epstein-Barr virus

BrightCandle

Senior Member
Messages
1,147
Yeah!! I've met so many!

Given the stigma associated with ME/CFS I think a lot of people with it hide it and many further deny the possibility its what is causing their symptoms. Its a chronically under diagnosed condition. I suspect if a treatment/cure becomes available we might see an incident rate of something around 1 in 100 to 1 in 500. It isn't all that rare at all and long covid has simply become an acceptable form of it, to doctors even who will admit long covid is real while dismissing ME/CFS.

I will not be surprised to find out EBV is the cause of ME/CFS too. All these viruses we have passed over for vaccinations because they are "harmless" are going to be found to cause cancers and all sorts of conditions that we could have wiped out if we had spent some time on vaccines.
 

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
Well I've just done 16 days of famvir 500mg two or three times a day and 9 days of valtrex at 1.5g a day mainly. The valtrex hit something - got to be ebv - much harder than the famvir and I've been off it two days now due to kidney stones and allergic symptoms but it worked. I gradually felt better over 3 to 4 weeks but fatigue went, PEM became buffered on the last 2 days of valtrex. Same with famvir. PEM was replaced by brain fog and diziness basically. Valtrex made me feel relaxed as well for the first time in ages. Which may mean nothinf. Anyway I felt the ebv and swelling spike in my throat (tonsillitis for 4 days) then gradually retreat until I wasn't sure what viral pocket it was going for.

Anyway people on Twitter Inc myself keep saying if ebv is doing this to MS patients then what the hell is to doing to Me patients?

Ontop of this if covid is causing all sorts of long term problems in various organs. Then what will hvv6, ebv and cmv and hsv run amok do each time we crash? We know to stop degeneration pacing and energy management is vital.

Anyway we will see. Been her before not calling a thing. Too many subsets.
 
Messages
21
IFL Science posted a good article which includes the slides from the company: https://d1io3yog0oux5.cloudfront.ne...estor+Presentation+March+22,+2022_vFinal3.pdf

Some key takeaways from me:
- Phase 2 should finish registering in Sept but they will monitor people for 4 years!
- Phase 3 will follow but has fast track status from FDA
- The company says ATA188 has potential in other EBV related autoimmune diseases including diabetes but excluding ME/CFS... I think that shows how a lack of biomarkers is making it difficult to achieve statistical significance in clinical trials which is discouraging biotech companies from investing in us.
 

Marylib

Senior Member
Messages
1,155
Thanks @Paraprosdokian. Yes, true - that elusive biomarker. It can take ages to get an MS diagnosis too. Ugh - 4 years? It's too long - people with MS need help. We all need help but I've pretty much given up on anyone finding a treatment for us.