ME/CFS Science
@mecfsskeptic.bsky.social
In-depth analysis of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Formerly known as ME/CFS Skeptic.
https://mecfsscience.org/
https://mecfsscience.org/
Could be, but think it's more likely that the treatments simply didn't work.
November 11, 2025 at 6:45 PM
Could be, but think it's more likely that the treatments simply didn't work.
Interesting, so everybody hyperventilates when nearing their limit in maximal CPET? Is this like the body trying to put in more fuel than the engine can handle?
November 11, 2025 at 4:08 PM
Interesting, so everybody hyperventilates when nearing their limit in maximal CPET? Is this like the body trying to put in more fuel than the engine can handle?
Do you have any insights about what might be causing the different breathing patterns, or do you think they aren't very relevant to ME/CFS?
November 11, 2025 at 12:29 PM
Do you have any insights about what might be causing the different breathing patterns, or do you think they aren't very relevant to ME/CFS?
9) Link to the paper (open-access):
Knopman et al. 2025. Evaluation of Interventions for Cognitive Symptoms in Long COVID A Randomized Clinical Trial.
jamanetwork.com/jour...
Knopman et al. 2025. Evaluation of Interventions for Cognitive Symptoms in Long COVID A Randomized Clinical Trial.
jamanetwork.com/jour...
November 11, 2025 at 9:26 AM
9) Link to the paper (open-access):
Knopman et al. 2025. Evaluation of Interventions for Cognitive Symptoms in Long COVID A Randomized Clinical Trial.
jamanetwork.com/jour...
Knopman et al. 2025. Evaluation of Interventions for Cognitive Symptoms in Long COVID A Randomized Clinical Trial.
jamanetwork.com/jour...
8 ) So this seems like a clear null result for these behavioral interventions.
Good that the researchers chose an active control group instead of a waiting list; otherwise, the trial might have found false positive results.
Good that the researchers chose an active control group instead of a waiting list; otherwise, the trial might have found false positive results.
November 11, 2025 at 9:25 AM
8 ) So this seems like a clear null result for these behavioral interventions.
Good that the researchers chose an active control group instead of a waiting list; otherwise, the trial might have found false positive results.
Good that the researchers chose an active control group instead of a waiting list; otherwise, the trial might have found false positive results.
7) There was some improvement over time in all study arms (including the control group), and this was inversely related to longer duration of long COVID.
November 11, 2025 at 9:25 AM
7) There was some improvement over time in all study arms (including the control group), and this was inversely related to longer duration of long COVID.
6) The authors conclude:
"No support for any of the interventions was found in the secondary outcomes of participant-reported symptoms or neuropsychological tests, nor did a subgroup analysis identify any groups with notable benefits from any intervention."
"No support for any of the interventions was found in the secondary outcomes of participant-reported symptoms or neuropsychological tests, nor did a subgroup analysis identify any groups with notable benefits from any intervention."
November 11, 2025 at 9:25 AM
6) The authors conclude:
"No support for any of the interventions was found in the secondary outcomes of participant-reported symptoms or neuropsychological tests, nor did a subgroup analysis identify any groups with notable benefits from any intervention."
"No support for any of the interventions was found in the secondary outcomes of participant-reported symptoms or neuropsychological tests, nor did a subgroup analysis identify any groups with notable benefits from any intervention."
5) The primary outcome was a self-reported questionnaire (the modified Everyday Cognition Scale 2), but secondary outcomes included objective cognitive tests. These assessed working memory, reaction time, and lexical fluency.
None showed a significant treatment effect.
None showed a significant treatment effect.
November 11, 2025 at 9:25 AM
5) The primary outcome was a self-reported questionnaire (the modified Everyday Cognition Scale 2), but secondary outcomes included objective cognitive tests. These assessed working memory, reaction time, and lexical fluency.
None showed a significant treatment effect.
None showed a significant treatment effect.
4) There were 5 trial arms as shown in the graph below. Every group received computerized cognitive training except the control group that got video puzzles and games.
There was also a special control group that received a sham version of transcranial current stimulation.
There was also a special control group that received a sham version of transcranial current stimulation.
November 11, 2025 at 9:25 AM
4) There were 5 trial arms as shown in the graph below. Every group received computerized cognitive training except the control group that got video puzzles and games.
There was also a special control group that received a sham version of transcranial current stimulation.
There was also a special control group that received a sham version of transcranial current stimulation.
3) The interventions occurred 5 times per week over a 10 week period and were done at home. Participants received individualized study kits or completed all treatment sessions via telehealth video visits.
The trial had excellent retention (>90%) and protocol adherence (>80%)
The trial had excellent retention (>90%) and protocol adherence (>80%)
November 11, 2025 at 9:25 AM
3) The interventions occurred 5 times per week over a 10 week period and were done at home. Participants received individualized study kits or completed all treatment sessions via telehealth video visits.
The trial had excellent retention (>90%) and protocol adherence (>80%)
The trial had excellent retention (>90%) and protocol adherence (>80%)
2) This was a major trial with 328 participants across 22 trial sites. Inclusion criteria were self-rated cognitive complaints after a SARS-CoV-2 infection that had been present for at least 12weeks.
November 11, 2025 at 9:25 AM
2) This was a major trial with 328 participants across 22 trial sites. Inclusion criteria were self-rated cognitive complaints after a SARS-CoV-2 infection that had been present for at least 12weeks.
Yes, had the same impression of having heard this before quite a long time ago.
The paper also says that the patients in this virus study were previously described in the severely ill patient study (Chang et al. 2021.). So it's probably old data.
www.mdpi.com/2227-9032/9/...
The paper also says that the patients in this virus study were previously described in the severely ill patient study (Chang et al. 2021.). So it's probably old data.
www.mdpi.com/2227-9032/9/...
www.mdpi.com
November 10, 2025 at 1:02 PM
Yes, had the same impression of having heard this before quite a long time ago.
The paper also says that the patients in this virus study were previously described in the severely ill patient study (Chang et al. 2021.). So it's probably old data.
www.mdpi.com/2227-9032/9/...
The paper also says that the patients in this virus study were previously described in the severely ill patient study (Chang et al. 2021.). So it's probably old data.
www.mdpi.com/2227-9032/9/...
9) Link to the paper:
Mancini et al. 2025. Abnormal breathing patterns and hyperventilation are common in patients with chronic fatigue syndrome during exercise.
Mancini et al. 2025. Abnormal breathing patterns and hyperventilation are common in patients with chronic fatigue syndrome during exercise.
Frontiers | Abnormal breathing patterns and hyperventilation are common in patients with chronic fatigue syndrome during exercise
IntroductionPatients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) experience symptoms of fatigue, dyspnea, mental fog, and worsening fati...
www.frontiersin.org
November 10, 2025 at 9:09 AM
9) Link to the paper:
Mancini et al. 2025. Abnormal breathing patterns and hyperventilation are common in patients with chronic fatigue syndrome during exercise.
Mancini et al. 2025. Abnormal breathing patterns and hyperventilation are common in patients with chronic fatigue syndrome during exercise.
8 ) The authors don't really go much deeper into what might be the cause of the breathing problems but suggest it may be a "potential new therapeutic target in the management of ME/CFS" using breathing retraining and pulmonary rehabilitation...
November 10, 2025 at 9:09 AM
8 ) The authors don't really go much deeper into what might be the cause of the breathing problems but suggest it may be a "potential new therapeutic target in the management of ME/CFS" using breathing retraining and pulmonary rehabilitation...
7) Seems like this was partly confirmed in this paper. Patients had signs of excessive ventilation (higher VE/VCO2 ratios) but respiratory rate was roughly similar (a bit lower in patients).
November 10, 2025 at 9:09 AM
7) Seems like this was partly confirmed in this paper. Patients had signs of excessive ventilation (higher VE/VCO2 ratios) but respiratory rate was roughly similar (a bit lower in patients).
6) Suspect that the research focused on breathing patterns because a previous big study (Cook et al. 2022) found that ME/CFS patients had slower but deeper breathing than controls.
Link to this paper:
Link to this paper:
(PDF) Cardiopulmonary, metabolic, and perceptual responses during exercise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Multi-site Clinical Assessment of ME/CFS (MCAM) sub-study
PDF | Background Cardiopulmonary exercise testing has demonstrated clinical utility in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).... | Find, read and cite all the research you need on ResearchGate
www.researchgate.net
November 10, 2025 at 9:09 AM
6) Suspect that the research focused on breathing patterns because a previous big study (Cook et al. 2022) found that ME/CFS patients had slower but deeper breathing than controls.
Link to this paper:
Link to this paper:
5) The ME/CFS patients were likely only mildly impaired because their VO2 max was similar to controls and reached 80% of predicted values. The authors also mention that some of the breathing changes may be due to use of a mouthpiece to record data which can be uncomfortable.
November 10, 2025 at 9:09 AM
5) The ME/CFS patients were likely only mildly impaired because their VO2 max was similar to controls and reached 80% of predicted values. The authors also mention that some of the breathing changes may be due to use of a mouthpiece to record data which can be uncomfortable.
4) Across the 2 days of testing, approximately a third of the ME/CSF patients also showed evidence of hyperventilation (having too little CO₂ in the expiration) compared to only 4% in controls.
November 10, 2025 at 9:09 AM
4) Across the 2 days of testing, approximately a third of the ME/CSF patients also showed evidence of hyperventilation (having too little CO₂ in the expiration) compared to only 4% in controls.
3) The authors did exercises on two consecutive days (suspect that the main results of these tests will be published in a separate paper). The breathing patterns observed during the Day1 exercise test were reproducible on Day2 in 93% of the patients.
November 10, 2025 at 9:08 AM
3) The authors did exercises on two consecutive days (suspect that the main results of these tests will be published in a separate paper). The breathing patterns observed during the Day1 exercise test were reproducible on Day2 in 93% of the patients.
2) Dysfunctional breathing (DB) refers to rapid, irregular, shallow breathing.
Normally, you see a linear rise in respiratory rate and an rapid increase in the amount of air that moves in/out of the lungs. With DB, there is an erratic increase and more variability.
Normally, you see a linear rise in respiratory rate and an rapid increase in the amount of air that moves in/out of the lungs. With DB, there is an erratic increase and more variability.
November 10, 2025 at 9:08 AM
2) Dysfunctional breathing (DB) refers to rapid, irregular, shallow breathing.
Normally, you see a linear rise in respiratory rate and an rapid increase in the amount of air that moves in/out of the lungs. With DB, there is an erratic increase and more variability.
Normally, you see a linear rise in respiratory rate and an rapid increase in the amount of air that moves in/out of the lungs. With DB, there is an erratic increase and more variability.
6) Link to the letter (open-access if you create an account):
Goxhaj et al. 2025. Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease
Goxhaj et al. 2025. Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease
Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease
Long COVID is an umbrella term for the heterogeneous long-term consequences of SARS-CoV-2
infection. It encompasses a wide spectrum of phenotypes (sometimes overlapping), and
its underlying mechanisms might vary across and within phenotypes. Trials that do
not account for this heterogeneity risk false-negative results. First, endotypic heterogeneity
might produce heterogeneity in treatment response, and inadequate methodologies risk
eclipsing responder subgroups. Second, and the focus herein, phenotypic heterogeneity
constitutes a challenge for the choice of outcome measures.
www.thelancet.com
November 9, 2025 at 2:31 PM
6) Link to the letter (open-access if you create an account):
Goxhaj et al. 2025. Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease
Goxhaj et al. 2025. Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease
5) In other words, it might be quite difficult to generate an outcome measure that considers all Long Covid manifestations reliably. It might be like trying to develop a questionnaire that is specific to multiple different pathologies.
November 9, 2025 at 2:30 PM
5) In other words, it might be quite difficult to generate an outcome measure that considers all Long Covid manifestations reliably. It might be like trying to develop a questionnaire that is specific to multiple different pathologies.