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Jennifer Brea 48m
Replying to @evapenalvaEM
Sorry, I really can't help now. I am very badly crashed. You can also email info@meaction.net. That's the best I can do at the moment.
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Jennifer Brea 57m
I know you guys have both looked into this quite deeply. Can you point out to me if there are any studies missing from this page we should include?
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Jennifer Brea 58m
The most frustrating thing is that treatments are absolutely within the reach of our current science. But no one is looking/trying...
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Jennifer Brea 58m
I do sometimes feel like a person with syphillis before antibiotics, or T1D before insulin. One day (if it's really just a matter of early EV treatment) this will be trivially easy to treat. And we'll imagine how hard and weird it must have been to live in the dark ages...
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Jennifer Brea 1h
And then there's trying to get NIAID to do an intramural trial. And then there's contacting EV researchers (again, there's strangely very few).
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Jennifer Brea 1h
There really are very, very few EV researchers in the US as compared to those studying other infectious agents. I need to think about the best way to push at least that part forward. There are the companies that already have anti-EV agents that they never brought to market...
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Jennifer Brea 1h
Again, the EBV doesn't need to register as reactivated. I do think folks looking at EBV had the model all wrong. It's more a mechanism than the cause.
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Jennifer Brea 1h
Also, Mestinon has helped a lot with my muscle fatigability/weakness. It's being trialled now in patients with exercise intolerance/preload failure. There is some evidence that acetycholine receptor autoimmunity is also EBV-linked.
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Jennifer Brea 1h
This may all be downstream of the initial infection. Herpesvirus antivirals definitely help me feel better, but I still have sky high Coxsackie B4 titers. But symptom relief / preventing further damage matters when there is not a treatment for EV.
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Jennifer Brea 1h
I know a lot of people who after developing ME go on to get recurring herpesvirus outbreaks. I had recurring HSV-1 infection until I started taking antivirals. Some people get shingles. Far more subtle activity than that can cause autoimmunity.
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Jennifer Brea 1h
And it's not really, in that case, a matter of "finding" EBV. 90% of people have it. What this paper shows is that is the mechanism through which risk genes for a wide variety of autoimmune disease are turned on. It's a necessary but not sufficient condition.
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Jennifer Brea 1h
You only need a very little bit, though. It's not so much that EBV is super active. Slightly active is enough to cause epigenetic changes:
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Jennifer Brea 2h
Replying to @evapenalvaEM
I'm sorry. I'm very sick and am limited in what I can do. If you need to find help, you can join this group. Most members are bilingual and can help translate and direct you toward what you need:
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Jennifer Brea 2h
Replying to @MEwarrior_au @NIH and 8 others
Jacquie, NO ONE supports this. SEID was rejected by CFSAC in 2015 and is dead, dead, dead in the water. No one is trying to change the name to SEID.
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Jennifer Brea 10h
Studies continue to find autoantibodies. One researcher at Montreal found autoantibodies in 90+ %. If EBV is mediator, would explain why many triggers could lead to similar disease states.
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Jennifer Brea 10h
Most of the adult planet is post-EBV. EBV increases risk of wide range of autoimmune diseases. Totally possible that smoldering EV infection —> EBV reactivation —> autoimmune disease.
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Jennifer Brea 11h
I don’t think it would be hard to get enterovirus researchers interested in this. The challenge is, there are so few. I tried reading everything I could about Coxsackie B4. It’s very, very thin.
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Jennifer Brea 11h
For the same reason that the same Coxsackie virus can cause many different disease states and in most people, no disease at all.
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Jennifer Brea 11h
But I don’t subscribe to “true ME” and I don’t know what alternative is, “fake ME?” If a lot of the autoimmune damage is mediated through genetics and EBV, one could see how many triggers could lead to very similar outcome.
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Jennifer Brea 11h
Well, there are drugs (anti-enterovirals) in development. None on the market. We need to figure out a way to go and get them.
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