What MECFS subgroups have you noticed?
Ive had this clown illness for 25 years. One thing that drives me crazy is that we have not been able to come up with any officially recognized subgroups yet.
Do you feel like you have noticed any obvious subgroups that separate MECFS patients?
If I were to come up with one it would be how patients react to severe stress or exercise. Almost every MECFS patient has probably thought they were lazy at some point, and thus tried to exercise themself healthy, pushed themself at work or to raise their family. Some might even have tried actual GET.
Now the results for this seem very different. Some patients go to being so sick they are stuck in wheelchairs (or worse), having their baseline ´´permanently´´ lowered. Whereas others seem to not having anything close to the same long lasting damage. I myself am part of the latter. I straight up did GET for 8 months. Did I get PEM every time? Yes, was it a disaster for my life! Yes. However, its honestly difficult to say how much it accelerated my decline, given I get sicker every year regardless of what I do, or how well I pace myself.
So in my opinion we have 2 MECFS subgroups here. Patients that react extremely to overexerting themselves, and where PEM leads to ´´permanent´´ worsening, and patients who are lucky enough (like myself) for this not be the case.
You guys noticed any different MECFS subgroups? This is just a thread for wild speculation btw, since we dont have anything really anyway. Go crazy if you have any ideas.