I am 58 and feel some days like 88.
Lately, though, after many years, I seem to have more energy.
At least the crashing fatigue is not a problem these days.
What did I do? The only thing I was doing different was the OLE, but I'm not sure if that was what eliminated the crashing fatigue.
I still have crashes after exercising too much. Like the other day ... I remembered how I used to be able to dance in my living room for exercise. (Yah, just creative movements, nothing exotic.) I thought, "why not? I feel good today." So I got to hopping around and leaping and raising my arms and twisting.
The next day, I had a bit of pain and aching and soreness -- that night felt feverish, aching head and eyes, the old symptoms coming back -- but not nearly -- not even close -- as bad a what I've had in the past. (In the past, I would have been laid out like death.)
Then the day after that, it was more achiness and pain, especially knees, tinnitus screeching louder than ever, pre-migraine. I took an Advil, and an anti-histamine before bed, and it pretty much resolved after two nights of sleep (and night sweats).
So, I want to say that OLE is worth a try if you haven't tried it. It takes a few weeks to kick in, so don't give up.
I think it's helped my immune system to hold the EBV in check.
My personal theory is that there is another organism involved in CFIDS and it isn't EBV alone that causes it. Check out the excerpt on the cause of Burkitt lymphoma:
"EBV is a ubiquitous virus that establishes a lifelong persistence following primary infection. How EBV affects its host hinges on a balance between viral latency, viral replication, and host immune responses. Generally harmless in almost every host and rarely a cause of disease, reactivation of EBV has been causally associated with various cancers. Acute malaria infection is known to increase the level of circulating EBV, but the precise mechanisms through which this virus reactivation occurs had been previously unknown.
"Now, Arnaud Chene and colleagues have identified CIDRla as the first microbial protein able to spur a latently EBV-infected cell into active production. Their results suggest that P. falciparum-derived proteins can lead to a direct reactivation of EBV during acute malaria infection, increasing the risk of Burkitt lymphoma development for children living in malaria-endemic areas."
In the case above, it is the malaria that causes or allows the EBV to reactivate.
I think what CFIDS researchers need to be looking into is what organism are we infected with that allows the EBV to reactivate?
This is the ANSWER. (My opinion.)