What's "normal" for ME? The diversity of ME experiences is vast. Is there any other disease with such diverse effects?Is this normal?
A valid, and common fear. I've had it numerous times, and happily the increase in severity passed each time. Sometimes it took years, but usually in months or weeks. The stress from that fear certainly doesn't help.My biggest fear is that this is no longer PEM, but my new baseline.
My ME is quite sensitive to a large variety of foodstuffs. Certain ingredients can trigger what is indistinguishable from PEM. Food intolerances affecting ME doesn't seem to be very common, but it is a serious problem for many of us. So, no guarantees, but it's certainly possible that your present severity is due to something you consume. If you have wheat products every day, how can you know that it's causing problems? I recommend experimenting with your diet: avoiding foods (food families, ingredients, etc) that you are presently consuming frequently. My standard recommendation for PWME is to keep a food/activity/symptoms journal, as detailed as you are comfortable with. That can reveal patterns that human memory is just not adequate for.Only get up for toilet and quick bite.
FWIW, my present main intolerance is something in seeds. My best guess is arabinoxylans: complex sugars used in constructing plant cells. Unfortunately, AXs are common to most seeds (and some other foods), are highly varied, and there's very little data on which types are in which foods. As you can guess, it's highly limiting for my diet. I think the probability that you are intolerant of AXs approaches zero, but if you were, how would you know that your present severity is due to the seeds/grains that you might be eating daily?
The early stage of my ME involved type IV food sensitivity to most foods. A rotation diet (avoiding each food family for at least 5 days) avoided triggering the symptoms.
The other benefit of experimenting with different foods: there's always a possibility that you could stumble across something that reduces your severity. That's occurred several times in my 25 years of ME. Sometimes it's just a temporary fix, but ordinary cumin ended up as a permanent cure for my PEM. I think that for PWME, a cure for PEM is better than winning a big monetary prize in a lottery. It's a food lottery, and you can enjoy eating some of your "tickets".