ME/CFS Atlas site

Felis Catus said:
I had trouble finding out what E0, E1,... mean. Maybe it's somewhere prominent but I missed it. I found it in About, scrolling down. Ignore the comment if the same info is somewhere more obvious, too.

I think it might be worth expanding the explanation for E0, E1,... - what they are and what they aren't, to say e.g. that they don't indicate the quality of the paper, that there might be issues with methodology and interpretation of the results. A LOT of people without scientific background take papers at their face value. Also, the E0 Consensus - nice green, indicating good stuff - includes systematic reviews from psychosomatic journals and systematic reviews endorsing exercise and CBT. So, I think a bit more clarification on the meaning of Es would be good.

But it's your website after all.
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Fair point. The E levels are meant to organize the evidence, not to show that a paper is good or reliable. A paper can still have major problems in method or interpretation, so that likely needs to be explained more clearly.
 
For the PEM page:
Post-exertional malaise (PEM) is the hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome — a disproportionate worsening of symptoms following physical, cognitive, or emotional exertion, typically delayed by 12 to 72 hours.
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I know it’s common to refer to PEM as a symptom, but it’s not a symptom. PEM is the pattern of symptoms worsening after exertion/stimuli.
Two-day cardiopulmonary exercise testing studies demonstrate reproducible impairment on the second test day, a pattern not seen in deconditioning or other fatiguing conditions.
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This seems a bit off topic.
Research into PEM mechanisms explores immune activation, signals suggestive of impaired cellular energy production, autonomic abnormalities, and ion channel findings in immune cells under physiological stress; no single mechanism has been established as causal.
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These kinds of wordings seem appropriate. This is what is being explored, we don’t know if it’s relevant yet.

From the interventions page:
Whether IVIG benefits specific immune subgroups remains debated
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This phrasing deviates from the rest. Why is it «debated» compared to the others where it’s emphasised that there is no evidence of efficacy yet?
 
Utsikt said:
For the PEM page:

I know it’s common to refer to PEM as a symptom, but it’s not a symptom. PEM is the pattern of symptoms worsening after exertion/stimuli.

This seems a bit off topic.

These kinds of wordings seem appropriate. This is what is being explored, we don’t know if it’s relevant yet.

From the interventions page:

This phrasing deviates from the rest. Why is it «debated» compared to the others where it’s emphasised that there is no evidence of efficacy yet?
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I think some of this is fair, mostly on wording and consistency. PEM is often called a symptom, but more precisely it is the pattern of symptoms getting worse after exertion or other stimuli, so that could be phrased better. I do not think the two day CPET point is off topic on a PEM page, because it is one of the clearest objective findings linked to exertion intolerance in ME/CFS, but the connection could be made clearer. I also agree the IVIG wording should match the rest better, because if the main message is that there is no good evidence of efficacy yet, then “remains debated” sounds softer than the rest. So I do not see this as a big problem, just some wording that could be tightened.
 
Thank you for being so engaged. There is no rush with these comments, I’m just exploring the site and jotting things down as I go along.
Robius said:
I do not think the two day CPET point is off topic on a PEM page, because it is one of the clearest objective findings linked to exertion intolerance in ME/CFS, but the connection could be made clearer.
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PEM isn’t exertion intolerance, whatever that means. And we don’t know if the findings on the CPETs are related to PEM. The second day test might even happen before the symptoms kick in.
Robius said:
I also agree the IVIG wording should match the rest better, because if the main message is that there is no good evidence of efficacy yet, then “remains debated” sounds softer than the rest. So I do not see this as a big problem, just some wording that could be tightened.
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Yeah, I’m just writing down things as I go along.

I asked the chat if neuroplasticity is involved in ME/CFS. It pointed to this study:
One case report described emotional processing work paired with gentle bodywork that improved fatigue symptoms

↗ jensen-2026-mindbody-approach
, but this was a single case and doesn't establish whether neuroplasticity mechanisms were involved.
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This is incorrect. It’s a case report, and we can therefore not established that something «improved» fatigue symptoms. The last part also implies that the treatment is effective, but that we don’t know why.

The study page makes the same mistake in the quick summary:
While this single case is interesting, it does not prove the treatment works for everyone with ME/CFS.
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It does not prove the it’s effective, period. This phrasing implies it’s effective for some with ME/CFS, even though it wasn’t a study on ME/CFS but a patient with chronic fatigue, and efficacy hasn’t been established.
This case suggests that integrated mindbody techniques addressing emotional processing alongside physical symptoms warrant further investigation as a potential complementary approach for a subset of patients.
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This statement also isn’t appropriate, «warrant» implies it’s justified to test this on ME/CFS based on a single case study with subjective outcomes. That’s far too heavy, and it implies a positive judgement of the intervention.

The other texts are inconsistent with the use of «improvements» and «reported improvements». The latter is the correct one.
 
Utsikt said:
Thank you for being so engaged. There is no rush with these comments, I’m just exploring the site and jotting things down as I go along.

PEM isn’t exertion intolerance, whatever that means. And we don’t know if the findings on the CPETs are related to PEM. The second day test might even happen before the symptoms kick in.

Yeah, I’m just writing down things as I go along.

I asked the chat if neuroplasticity is involved in ME/CFS. It pointed to this study:

This is incorrect. It’s a case report, and we can therefore not established that something «improved» fatigue symptoms. The last part also implies that the treatment is effective, but that we don’t know why.

The study page makes the same mistake in the quick summary:

It does not prove the it’s effective, period. This phrasing implies it’s effective for some with ME/CFS, even though it wasn’t a study on ME/CFS but a patient with chronic fatigue, and efficacy hasn’t been established.

This statement also isn’t appropriate, «warrant» implies it’s justified to test this on ME/CFS based on a single case study with subjective outcomes. That’s far too heavy, and it implies a positive judgement of the intervention.

The other texts are inconsistent with the use of «improvements» and «reported improvements». The latter is the correct one.
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I will add to my todo list.
 
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