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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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I'm for drawing a very clear, direct, brightly colored, impossible-to-miss line straight to All Better Now!
Let us know! Many of us don't get out much.I always thought "draw a line under" was for emphasis thus the phrase "the bottom line". But then I also thought the Lipkin study was coming out on the 28th. I think this is the first time my fog has had a positive outcome.
Of course now I have to stop doing anything productive and find the phrase on the internet, etc., etc. etc.
I don't get out much, either.
Barb C.:>)
Now this has led me to wonder about the phrase "drawing a line in the sand" and how it's related to the above. Learning new things is a never ending battle.
In terms of public perception, I think very much will depend on the way the information is released to the media. The exact wording of press releases, any quotes uttered on the record by Lipkin or other researchers, etc.
So... what is everybody else expecting from the publication of this study in another couple of weeks?
The ritux work is looking really interesting, but I still don't quite follow how the flawed B cells are managing to cause all our symptoms. Hopefully they'll get a good enough handle on it to explain it to me in layman's terms sometime soon.
One theory is that EBV lives and replicates in B-cells, and reactivates HERVs. The reactivated HERVs tie in with the retroviral research, and could potentially explain some retroviral antibody findings, and even some retroviral sequences. Kill the B-cells, and you kill the EBV virus and reduce HERV reactivation. That's a theory anyway. It might not be the answer.
Also herpes viruses also like to hide out in the nerves system. I think the idea of ritux and antivirals together will be more effective. I dont think we can totally get rid of these viruses, probably only lower viral load and maybe if nk cells work then they can keep these viruses dormant. More research dollars is what the scientists need.Patients taking Rituximab relapsed shortly after stopping treatment which had removed B cells from the body, suggesting that these cells are not the source of the disease.
This diagram (fig 1) reports on the rebuilding of B cell levels over time and would not correspond with a sharp return to disease status seen in several of the patients
http://bloodjournal.hematologylibrary.org/content/117/7/2275.full
I don't think the Rituximab kills all the B-cells and that may be the problem as when they stop taken it the B-cells are rapidly replenishing and right behind it is the EBV replinishing itself. Might be a possiblity that taking an AV while on Rituximab or take Rituximab for awhile and then stop and go on AV for awhile and cycle like this a few times.
The more I read about the EBV the more it bothers me in away because it is a mean virus goes virtually anywhere in the body.
I have 2 big lymph nodes pop up on the side of my neck in the last 2 to 3 weeks. CT scan just showed they were 2.3 times their normal size, so now i have to get Fine Needle Aspirations done on them. Out of the blue the radoligist made a note that cervical stenosis has narrowed my cervical canal down to 6mm from C4-C5 and C5-C6.