When should I stop searching for an objective alternative diagnosis to ME/CFS?

to me this stuff is really complex but consequential. the average doctor including specialists seems not capable of dealing with it, and it isn't covered well in medical literature.

confusing.

 

> I've also started to doubt that PEM is a reliable indicator of having ME/CFS.

can we assume you mean that if you have pem, you might not have me/cfs?


are there e.g. rare diseases, with objective signs, that have the enormous number and diversity of symptoms that can occur in a single pwme? including "weird" symptoms? e.g. mold intolerance and and whatever else doctors hate?

that number and diversity and weirdness made me feel incompetent to figure it out. y2kish i scoured harrisson's and lange's internal medicine textbooks and found nothing with that kind of number and diversity and weirdness.

pretty thiiiiiiiiiiiiiick textbooks. did i need a rare diseases textbook instead?


wegener's granulomatosis, maybe [should i get tested?]?, and a bunch of diseases like sle with "and other symptoms"; thanks guys, that's real helpful there; mind mentioning them and the number that is possible to have at the same time?

i guess hiv/aids was about as close as wegener's [name changed to Granulomatosis with Polyangiitis].


cfs was there with like ONE SYMPTOM and reassurance as the treatment. reassurance that WHAT?


the potentially big thing, i think, is that i found NOTHING with the weird symptoms, circadian, intolerances, oi, exec dysfunction, dysauto, allergies, etc., number, or diversity. now i have more, angioedema, etc. also, there is something else that sticks in my mind:

for a long period, every few months to a year, i got a new disease that never went away. what disease does that? what metadisease?


so, for concreteness, suppose maybe it is sle. it's common and supposedly can have all sorts of symptoms. i test positive on anti-ds dna for sle. supposedly very high specificity except for a virus you can test for or so.

but my doctor said my clinical picture does not match. where can i find that picture? those textbooks were useless for finding anything. there is no picture to match the clinical picture to. "and other [!@#$] symptoms."


what persuaded me that m.e. is viable was not pem, but circadian, rare in general but common in m.e. in ccc. recent results in e.g. genetics.

surely, if all pwme have some existing thing, we'd know about that by now? idk.

behcet's or whatever. which, i still don't know if it has objective signs and the number, diversity, and weirdness.

i find subjective resonance in the experiences of pwme. is overlapping common? is it confirmation bias?


i remain really confused by pem, unto even the, almost taboo, opposite of what i think you are saying [i.e. if you don't have pem closely as described by certain descriptions of it, it seems you might still have m.e.] exertion takes a lot out of me and can lead to permanent harm.

pem as a concept seems just too confused imo. at least for severe? the permanent pem thing, the immediately vs. 24h delay, whether pem is the same as a crash, the limitation to cognitive physical and sometimes emotional as opposed to lots of other intolerances also, whether it is a symptom or a metasymptom, which symptoms get worse, etc. the confidence in pem out there in pem as a pathognomon confuses me given the confusion surrounding it.

i get that presentations vary a lot though. and i get that pem is a clear and distinct thing to observers, even if it varies. what severity levels are they though, what diversity of symptoms, what number, what weirdness?

and then there are mold, lyme, etc. [which, could be m.e.]. dysautonomia, mcas too. symptom? cause? quite confused!

 

I am not convinced its optimal to ever give up trying to find an alternative diagnosis. However after five or so years I think it should be de-prioritized. The medical science is not there, the tests are not there, the treatments are not there, and the political reality is not there.

Doctors are never up to date, that ship sailed when I was a teen if not before, and I am now over 60. A doctor is up to date today if they are as up to date as the majority of doctors. Yet they are nearly all mired in the medical opinion and science of yesteryear.

In the late 70s medical science was doubling in data every four years. That is an exponential growth curve. We rely on advisory groups, panels and review groups to keep us informed, but what makes anyone think they always have a reliable basis for their views? They will be right a lot on the more common and well understood medical issues, yet increasingly wrong the further the collective science gets from the commonplace.

To me dealing with the limitations of the science, including tests and treatments (the lack thereof) and then the politics are more important. This is not just advocacy, we have to factor those into our planning. Financial issues and personal support systems will always remain a priority, and finding a perfect disease category, if we have repeatedly got nowhere, is less important than finding ways to survive.

My personal opinion is that in year one we should strive our hardest for answers. In the next four years or so we should probably keep looking but seek ways to cope rather than rely heavily on an unrealized diagnosis. After that we should not forget, but be mindful that even with an alternative diagnosis there still might not be adequate remedies. Its about coping, about surviving, and advancing our future prospects.

Pragmatism must take first place in our survival, not optimization. The best outcomes are currently very unlikely. Keep informed, look into likely chances to improve our situations, but focus on the everyday survival issues.

 

The longer I have been sick the stronger the circadian issues have become. Right now I think there are at least seven stages of sleep and circadian disorders, including a total collapse of circadian rhythms. They just get overlooked. The days and weeks in which I have no circadian pattern to sleep are increasing in severity, duration, and frequency. For those who are not aware I may have had ME for 54 or so years, although my alternative diagnosis would be post viral encephalitis, in my case measles. There is little science, no tests, and no treatments, for that either.

 

I might be the exception in that my circadian rhythm issues manifested with the onset of my illness. I'm autistic and I had non-24 symptoms before getting ME, but I could easily control it and stay diurnal until I got ME. Then my symptoms made it hard to manage things.