Being much to long here, but many of us have walked down this road before. No one else should do it, at least not without warnings and advice.
Be very careful now, Gary! You are still quite early on, and this is a very important time to try to do things right. Many of us have done exactly the same as You with very bad longtime effects.
It is not strange that this happens time and time again. First you have short spells of the healthy you and “wow, I think I’ve overcome it”, the very strong natural human instinct of pushing trough, maybe the general and positive, but in ME sense very unhelpful, “just carry on in the best possible way”, and other factors. The cumulative effect of uncertainty (no biomarker) and lack of proper knowledge and advice is very wrong all together. If not doomed to go wrong, the probability is exponential. The really difficult thing with this, that result in 9 out of 10 not managing, is of course that limits are absurdly low, so low that you will go into some sort of unconscious denial. This is why real knowledge of PEM and consequences, and taking good actions early on is so important on so many levels.
If there is a time to listen very close to longtime patients, it is now. When the dynamics of PEM - you have to be extremely careful. If you can manage this in the early stages ((which most people haven’t done in the past), it could have very significant impact. I guess managing here means doing as least harm as possible. You must avoid the rollercoaster of overdoing and payment early on which can cause immense harm. To put it frankly in an unscientific language, which I think many long time patients can relate to: I”m quite sure that if you push trough over and over again, the whole system will at some point (irreversibly) break down.
A little digression: the actual onset of ME either bang bed bound or a more gradual onset, is a choice of pest and cholera. We have a lot of “miracle stories” of other conditions labeled as ME and LP. That is not interesting. At the same time there may be some real cases of ME and improvement. It is worth noticing a common pattern when hearing “miracle-stories” of ME and LP (or maybe other bogus interventions). You will almost always have the bang onset, the “dark room and curtain situation” for months, often a year, but often not sick for very long all together. It will by the ones that tell the stories justify that these patients were really sick. No one should question that which is not the point here, the important point here is that these patients actually early on got a proper chance to recover. Then it may be disguised as recovered by LP or something else. As said, it is pest and cholera, but the some sort of gradual onset which the majority experience, is cruel because it is almost impossible not to do things wrong early on. Best advice for maintaining health and quality of life in the long run, not making PEM the permanent state, clearly must be what medicine itself ought to tell you but never will: be very careful of not overdoing.
I don’t know what it takes to make these podcasts but it comes as no surprise. I would imagine it takes a lot on top of other things, and they’ve come rapidly. Top of my head - I would like to hear a podcast every second month or so.
