List of ME/CFS Recovery and Improvement Stories

[Wishful]

Which criteria are you looking at?

I forget which one in the past had mention of exceptions, which is sensible since we vary so much. Maybe they've dropped that to tighten up selection for cohorts?

Whether you have cognitive or physical PEM doesn't matter, pacing applies to either or both.

I can't remember whether pacing actually made a difference for me. My PEM was short, just feeling lousy for part of the next day, so I didn't make much effort to pace myself. If I really needed to be functional the next day, I'd avoid obvious triggering activities.

Pacing wouldn't have applied to my cognitive-induced PEM, since it might have taken less than a minute of chatting to trigger it. Pace by only saying part of a sentence? I can't remember whether doing income taxes or trying to solve a difficult computer problem was affected by pacing, since those were necessary tasks and I just accepted having a lousy next day.

 

[eucatatrophe]

I forget which one in the past had mention of exceptions, which is sensible since we vary so much. Maybe they've dropped that to tighten up selection for cohorts?


I can't remember whether pacing actually made a difference for me. My PEM was short, just feeling lousy for part of the next day, so I didn't make much effort to pace myself. If I really needed to be functional the next day, I'd avoid obvious triggering activities.

Pacing wouldn't have applied to my cognitive-induced PEM, since it might have taken less than a minute of chatting to trigger it. Pace by only saying part of a sentence? I can't remember whether doing income taxes or trying to solve a difficult computer problem was affected by pacing, since those were necessary tasks and I just accepted having a lousy next day.

Here's a great list of the different diagnostic criteria that have been used and are used now if you're interested.

Yeah, that's fair. Pacing can fall apart when you're severe. At that point I read it more as "stop, rest" rather than "stop, rest, pace" since the idea is to stay in your energy envelope, not just to take breaks. That's only part of it

 

[Wishful]

since the idea is to stay in your energy envelope

There's the problem: I never had an energy envelope. My physical triggers seemed to be due to muscle damage (using muscles unusually) rather than duration of exertion, so pacing wouldn't apply. For cognitive activities, it also seemed to be due to unusual activities, such as chatting or dealing with a really challenging/frustrating problem, so again, pacing wouldn't apply.

I don't mind if the ME criteria exclude me from studies that are trying to find common elements. I wouldn't want to screw up a study by throwing numbers off. Since having an official diagnosis of ME wouldn't make any difference for me (no official treatment options or disability benefits, etc), I also don't care about fitting the criteria.

I wouldn't want the criteria to be so restricted that it predisposes decisions about how PWME are dealt with. Imagine if in order to get disability benefits, you had to prove that you had 28 specific symptoms, many of which were hard to actually measure. Likewise, unethical researchers could "prove" their theory by restricting cohort selection to whatever fits their theory.

 

[Hip]

Can we keep on topic please.