Discussion in 'BioMedical ME/CFS Research' started by John Mac, Dec 26, 2020.
Curious about the behavioral changes. Sadly not available to read yet.
I'm also curious what behavioural measures were different.
The lack of differences in stress, coping, anxiety or depression is unsurprising since most patients will say they were normal before the illness. But those who believe that the true cause of ME/CFS is psychological will probably continue to do so even after this study.
The association with autonomic symptoms seems potentially important.
Here’s the paper
Thanks, in the paper it doesn't say what the behavioural differences were, or I missed it.
Edit: this is at stage 2 so I'm still not sure what they're referring to in the abstract but too crashed to properly read the paper.
The one trend that seems to hold: early number of symptoms is one of the only strong predictors. Typically this is not something that is considered in clinical practice. Patients who present with a full page or more of symptoms are immediately labeled as malingering and so a high number of symptoms will almost always be missed. There is an almost visceral need to reduce things to one symptom or at least as few as possible, the one most bothersome symptom, which is not valid here as it's the sum of all symptoms that floors us, especially (and literally) autonomic symptoms.
All thanks to the modern definitions of "somatization" as too many symptoms. What a mess these people did, and continue to do. That absurd ideology continues to be a public menace.
It really is all about the symptoms, not just the illness but the disease as well, it's an important feature that was dismissed on principle. Science is supposed to be about following the evidence, even if it's uncomfortable. That it did not happen here explains a lot about the state of total failure. Evidence was simply discarded. Can't do that in medicine without serious consequences.
The overall incidence of 1.2% for the year in college students is alarmingly high!
...and the 23% conversion rate to ME in the IM group! Though I suspect this will have reduced by 12 months post-study.
I guess it wasn't a huge study in the grand scheme of things, though, and the basic experiment (perhaps minus the expensive blood analyses) would bear repeating across a number of institutions to get a better idea of the conversion rate at 6, 12 and 18 months.
It would be interesting to see how many still met ME/CFS diagnosis at 2 years. Lots of people I'm aware of have prolonged PVFS, some really badly for about 6 months to a year after glandular fever, and then recover fully. I think to get an idea how many actually have long term ME/CFS they would need to do a longer follow up than 6 months. I hope they are doing so.
Looks like an interesting study. Kudos to the research team of Jason who seems to be one of the few who is doing structural research to further develop the field.
I wonder how this study relates to their previous one on EBV-infection in students - was there an overlap between these two cohorts? It seems that they simply did the same study over again (it's an excellent study design - so in my view definitely worth collecting more data).
The results look interesting. To get a clearer picture I focused on the differences between the ME/CFS and recovered group (in other words for simplicity sake and because of its small sample size, I ignored the severe ME/CFS group that met multiple case definitions)
If I understand correctly (based on the preprint @leokitten provided) there were almost no statistically significant differences between the ME/CFS group and the recovered group at timepoint 1 (pre-infection, when one everybody was healthy). The only significant differences are scores on the DePaul symptom questionnaire en cytokine IL-5. One explanation for this might be the small sample size (60 in the recovered and 31 in the ME/CFS group) and the fact that the authors needed to correct for multiple comparisons.
At timepoint 2, during EBV-infection there were multiple statistically significant differences between the ME/CFS and recovered group, not only in autonomic symptoms and the DePaul symptom questionnaire but also on mental health, anxiety, depression, dysfunctional coping, and perceived stress.
I've tried to make an overview of this in the following table (which simplifies the information in table 2 of the paper by leaving out the S-ME/CFS group and focusing only on significance levels).
I didn't initially see the number of severe cases of ME/CFS (it's is not in the abstract), but it is down further in the paper.
From the study:
I can't figure out what a "symptom behavioral measure" is. In terms of the behavior of college students, the first thing that comes to mind is lack of sleep, or erratic sleep, due to "all-nighters" studying or partying. I'd suspect that sleep deprivation is fairly common in college students and some might be on the extreme side of the scale. Pretty much the same would go for poor nutrition. It could also relate to the consumption of alcohol / drugs. I suppose "symptom behavioral measures" might even refer to how college students behave when they get sick. Again, you might find that this is an area where some college students don't take illness seriously enough and may try to "work through" it. I could see these sort of behaviors resulting in some sort of "anomaly" while recovering from an illness - but I'm just guessing.
While there may be participation issues, Lenny knows how important ongoing followups are (and I'm talking 10+ years).
Glad it wasn't just me. Maybe it will be mentioned in the final paper?
this is also the study he's been using to study who gets covid and then long-covid from the same cohort.
I wasn't sure either, but i'm wondering if that's some sort of phrasing for "fatigue" or other "phsyical" symptoms? I'm surprised the point is left unclear. Also, this sentence is odd: "Another difference between our study and previous reports was the high rate (23%) of ME/CFS following IM; this may be related to very close surveillance in our confined population of college students or high levels of baseline fatigue seen in college students." Wouldn't this likely be that some people were taking a long time for natural recovery, as happens with glandular fever? That seems at least a possibility that should be mentioned.
I considered 'fatigue' as well but as it said several I wasn't too sure about it. The 'physical' symptoms do not sound like behavioral? The physical symptoms will however change the behavior of someone but again no mention of it...So I really don't know lol.
I thought this was a missed opportunity together with there not being a split analysis of the ME/CFS (mostly Fukuda) group with respect to PEM.
Would the not-recovered-but-not-quite-ME/CFS group have looked the same as a Fukuda-without-PEM group? And a Fukuda-with-PEM group may have looked more like the S-ME/CFS group?
And how would those different groups fare after 1 year, 2 years, 3 years...?
Maybe "behavioral changes" refers to the answers to the COPE scale, as in coping behaviours? Clear as mud...
Yes I think so, the previous EBV study by Jason and colleagues showed how the percentage of patients meeting ME/CFS criteria declined from 13% at six months to 4% at 24 months. https://pediatrics.aappublications.org/content/124/1/189.short
But this doesn't' explain why the rate at six months in this study (23%) is much higher than previous ones (around 10%). Perhaps it's simply a coincidence or due to the fact that patients could meet 1 of 3 case definitions.
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