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Moore et al. 2023 did something interesting on that score - they told subjects to rest, and it seemed to work, in that they had less PEM before they did the first CPET than they did when initially assessed: But of course even in that semi-rested state prior to CPET, their symptom/PEM scores...

I agree, if something is quickly eased by rest within a few minutes then that is not PEM. It doesn't meet the prolonged criterion. For me, though, if my legs start feeling sore and stiff after walking too much, they're going to be sore and stiff for the next week or so. If I'm upright to the...

Really good question. I experience both immediate and delayed PEM. I had a visit yesterday - I only manage a few a year - where I talked to someone I love very much and am very familiar with for 45 mins. While lying down in my own bed. A small bit of having to multitask - talk and listen...

I looked at Moore et al. 2023 again - this is the study from Hanson's group called "Recovery from Exercise in Persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)" available here https://www.mdpi.com/1648-9144/59/3/571. It's relevant for this discussion because it focuses on...

The Institute of Medicine report in 2015 (now National Academy) does not emphasise delay they way the CMO report (UK, 2002) did. Here’s how they describe PEM: They go into more detail about the onset of PEM on p.79: And here’s what they say about duration/how prolonged PEM is, also p.79: The...

The MEA and the International Consensus Primer and buckets of other sources have always talked about "immediate PEM" and "delayed PEM". Are those terms not enough do you think?

Regarding immediate PEM, I think Stussman et al. 2023 is interesting. That's the substudy of the NIH study that looked at PEM following CPET. Figure 4 of shows a 8/10 pwME's PEM rating rising between -1 and +1 hrs i.e. during the trigger or immediately after it, whereas figure 3 shows only 2...

From that info alone, I don't think you could definitively say, that is or isn't PEM. But you could say, that's not normal. If I read about someone with anaemia or back pain or post-surgery having to do that, I would think nothing of it - they're fatigued. For what it's worth, for most of the...

I think defining PEM only as a delayed crash is problematic. This is particularly important when PEM is rightly regarded as the core feature of ME/CFS and is often touted as a feature that contraindicates exercise therapies. If patients and clinicians are unsure early on whether they have...

They explain why here: Seems reasonable. Then they acknowledge that: I tend to think the bigger problem is the one @Yann04 brought up above: In Stoothoff et al., for example, the mean SF36 physical function score for each group is as follows (I rounded to nearest whole number): 59...

Or step on another deterioration landmine. I did not spend 10 years pushing through PEM, but I did spend 10 years deteriorating.

Fluge et al.'s placebo group went from 32.5 to 38.4 on the SF36 physical function subscale in 3 months. The PACE trial's specialist medical care group went from 39.2 to 46.6 in 3 months. So no, I won't be hotfooting it to FATIGUEWALK any time soon. It looks more like the controls were miffed...

Thought it would be helpful to have a record here of the detail of those studies. I put line breaks in to make these quotes a bit easier to read: Bretherick et al. 2023 (DecodeME) https://pubmed.ncbi.nlm.nih.gov/37881452/ Chu et al. 2019...

Yes, I'm with you on that notion of "underlying ME". And yes, there are triggers other than exertion for those changes to the underlying condition - noise being a big one for @DigitalDrifter and me, for example.

The 2021 NICE guidelines say this: And I think there's wisdom in advising that anything lasting more than a few days requires adjustment of what you're doing. The NICE guidelines define PEM and relapse as follows: I agree with them there, during my 10 years of deterioration, there was no...

Yeah, it's tricky, because I'm trying to start from their terminology, to come up with something that would have a hope of being accepted. I didn't want to use the term "deterioration" in the "PEM" section, because I felt that minimised it more, and it was better to point to the relapse and...

Yes but what on earth would it say?! I don't think we have a clue because no-one has followed us properly over time. There are a few studies showing that at any given time about 60% say their illness is fluctuating, about 10% relapsing-remitting (where they have periods they feel healthy)...

Yeah, so there are two relevant bits there: If we stick with their terms (since anything else is swimming upstream), I think this would be worth creating a separate relapse/deterioration section, starting with their sentence: And the following could be added to the PEM section: What do...

I agree. Things that were mystifying when I was mild are very clear now that I'm severe!

Gotcha. For me, "permanent deteriorater" conjures up someone who is constantly getting worse, rather than someone who got worse after a trigger and never recovered from that, but I understand you, and the need to be able to describe the experience. I think there are a few reasons why that...