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Would anyone who has had this for a long time say that they are actually close to figuring this out or does this hype happen every year to end up not finding anything?
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Would anyone who has had this for a long time say that they are actually close to figuring this out or does this hype happen every year to end up not finding anything?
Can I asked what set your illness off and what your symptoms are?I have no idea if they're close to figuring out ME/CFS; however, there is so much more new research being done now, which is not hype (see posts above); the NIH is finally waking up too, coming out of its coma of denial, like a long-slumbering giant - it's moving very slowly, but at least it's finally moving after 35 years of inaction. So I think the odds are greater than they have ever been that answers will be found - but as others point out, it still may be a very long haul; but I agree with @Murph, I choose to remain hopeful - it helps keep me sane! And what else can you do? I want my health back more than anything so I keep experimenting on myself, like many others here. And once in a great while I actually make a little progress; if I stopped trying, I wouldn't make any.
Can I asked what set your illness off and what your symptoms are?
As far as I recall, the Cyclophosphamide drug seemed to work on some of those who didn't benefit from Rituximab, but more trials need to be done on that. I think the phase II trial of that drug ends this month - assuming I'm not misremembering. I hope we don't have to wait too long for the results.
Seems like they've added six months to the trial duration so they can do extra follow-up. Source
"Status, CycloME part A
The medical intervention phase has been completed, and all participants are now in the follow-up phase. We have applied for an extension of the follow-up period by 6 additional months, thus completing the trial in July 2017. We are aiming to publish the results from the CycloME trial, part A, in 2017"
That means the CycloME trial will end only just before the unblinding of the Rituximab Phase III in October.
When they finished their Rituximab Phase II trial it took about 18 months for the paper to be published. Hopefully this time it all happens a bit quicker! If they get the Cyclo one done before October it will also give them clear decks to quickly get the Ritux paper out sooner rather than later.
The one thing we know about the Cyclo study though, is that it was working for 40% of patients at least. They said they'd extend it to severely ill patients if it worked for >40% of mld/mod patients and have made that extension.
However, the extension is just a pilot study. I think the side effects of Cyclo might a bit more extreme.
They say this:
"We have concluded that in order to extend the trial to include patients with severe to very severe ME, we need to adjust the protocol and plan the intervention and follow-up of each patient with great care. In order to gain more experience with this highly vulnerable group of patients, we are planning a pilot study involving a smaller number of participants."
In summary, the second half of the year could be very exciting. (or, I suppose, it could involve an exceedingly disheartening trip back to the drawing board!)