I very much appreciate the work of Fluge and MeIla and the rest of the team. They’ve done a heck of a job for many years in a professional, cautious and emphatic way. Gained knowledge and also built a valuable bio bank. Hope they’ll stick around, if able to get the necessary funding for future projects.
Had a brief look, but don’t know what to make of the results? Maybe results make way for further studies? I don’t want to spoil any excitement with a minor anecdote, but still thought I could share a little from my personal experience. For what its worth, I know that this drug can be very potent. In my case, unfortunately not for the better. Let’s just say that I am quite the opposite of a responder. Could speculate extensively about the reasons a major deteriration. There could be other co-existing reasons/explanations, as a natural decline per year, a very big permanent relapse in no connection to cyclo and so on. But given the magnitude of the deterioration, it seems quite likely that cyclo must have played a (significant) part. In my case.
I could add for the curious one, that when enrolled, I was a >10 year patient, moderate/severe. Mostly housebound. If I were to describe my course of illness in general terms, it’s been an endless journey of push-crash. Using every neuron of mental strength and going on pushing through as best possible, read: way beyond limits. In the aftermath from beginning of disease to May 2020; if I knew from the start what I knew many years ago, I would NOT have done the same thing over again, the approach of pushing on. And that’s about the only thing I’m sure of after all these years.
Another thing worth mentioning is that I personally have tried to achieve steps almost at any cost, after the idea of trying to maintain some of my rest health, the silent things, the things you don’t necessarily get symptoms from, but that obviously takes a massive blow, when going from active to non-active, such as hypertension, cholesterol, insulin and god knows what. But as we all know, pushing through in every circumstance that requires energy, in this case walking, is the mother of all catch-22’s. You may delay other bad things that comes as a result of inactivity, but the effort, when having to push through it, even if it is very gentle/slow walking, it will often or always make your ME-symptoms (a lot) worse, if being in or close to the so-called severe spectrum. To put it in another way: I have done a whole lot of walking that I should not have done from a ME perspective. That means fighting for every step no matter how hard it may be. If that make any sense? But how is one supposed to choose from 100% non-active and maybe better ME symptom-wise, or just a little active pushing through keeping some rest-health at bay but being in constant PEM? An impossible choice, the classic choice of pest or cholera. In the study they make a point that measuring of steps is not a perfect measurement. Overall definitely a good measure, but yes, it is true that patients for different reasons to some extent can choose how to expend limited energy. It can swing both ways, in my case more steps than any other meaningful activity.
And yup, did LP over a decade ago. Without any real advice, not knowing what to do or where to turn, out of options. But not defeated, taking some kind of personal responsibility? Well, the way wasn’t that long to the «magical» and aggressively advertised LP. End of the LP-story is not a good one, not bothering going into details here.
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