Non-improvement in chronic fatigue syndrome: relation to activity patterns, uplifts and hassles, and autonomic dysfunction, 2022, Friedberg et al

Andy

Andy

Senior Member (Voting rights)
Abstract

Objective
To test a model of non-improvement in chronic fatigue syndrome (CFS) utilizing self-report activity patterns (e.g., “push-crash”), uplifts and hassles, and a biological measure of cardiac autonomic function. Activity pattern impacts on symptoms and objective measures of autonomic and physical activity were also examined.

Methods
This prospective study in CFS collected all data remotely, including six months of weekly web diaries that recorded symptom ratings, activity patterns, and hassles and uplifts. In addition, six months of weekly heart monitoring and three months of daily waking actigraphy data were collected. Improvement or non-improvement status was assessed using semi-structured interviews at 6 months follow-up.

Results
148 individuals (87.2% female) were enrolled and 12.2% were lost to follow-up. Participants reporting non-improvement (n = 92), as compared to improvement (n = 38) showed greater autonomic dysfunction (lower heart rate variability [HRV], group difference = 5.93 (SE = 2.73) ms; p = .032) and lower mean intensity of behavioral uplifts (group difference = 0.14 (SE = 0.16); p = .043), but no significant differences in any activity pattern, including push-crash, limiting activity, and healthy pacing.

Conclusions
This study provided evidence for linking patient-reported non-improvement to a biological variable indexing autonomic dysfunction and a behavioral measure indicating a deficit in psychological uplifts. These findings suggest a possible marker of illness trajectory that could potentially advance the biomedical underpinnings of CFS.

Paywall, https://journals.lww.com/psychosoma...rovement_in_chronic_fatigue_syndrome_.16.aspx
 
Trish said:
Anyone have any idea what they mean by hassles and uplifts?

A pity it's paywalled. I'd like to see the whole paper.
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Psychologist speak:

Daily Hassles and Uplifts
"However, some psychologists questioned this method of evaluating stressful events. They believed that the rarity of such events could not account for the recurring stress that people experience on a day-to-day basis. Instead of looking at major, life-changing events, they emphasised the effect of relatively minor everyday occurrences, which a person may consider stressful. These daily hassles account for stressful events during a person’s commute, such as missing a train, or being late for work. They also account for the stress caused by minor tensions with relatives and peers, such as engaging in dispute with a spouse or co-worker.

Psychologists also recognised the effect of more positive minor events, or uplifts, on a person’s stress levels. They believed that such events could help to counteract the detrimental effect of hassles on an individual’s stress level. Such positive encounters could include managing to catch the last bus home, receiving praise from a teacher or manager, or enjoying an easy commute to work."

More at link: https://www.psychologistworld.com/stress/daily-hassles-uplifts
 
Google returns nothing for behavioral uplift, seems to be something they made up.
The paper said:
no significant differences in any activity pattern, including push-crash, limiting activity, and healthy pacing
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The paper said:
a behavioral measure indicating a deficit in psychological uplifts
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Making stuff up is a very lousy alternative to science. Not that they can actually take any of those into account, all of this is still just doing fuzzy maths on loose guesstimates with a pre-approved conclusion to put some iffy stuff about behavior this or that.

You gotta laugh at the "no difference in healthy pacing", whatever "healthy pacing" is.
 
Andy said:
These findings suggest a possible marker of illness trajectory that could potentially advance the biomedical underpinnings of CFS.
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Comment replaced
Replaced my initial response, which failed to note the many prior relevant publications in support of a biomedical explanation.

In isolation, the abstract's concluding remark can be (mis-)read as a weak adjuration to please consider that ME/CFS might just be biomedical. Without access to the full paper, I believe it is simply stating that measurement of heart rate variability alone might be a useful marker of disease state and inform the (accepted) physiological underpinnings.

[I didn't think it was correct or fair to leave this comment as initially written.]
 
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Yes I haven't heard the term before, seems another made up jobbie. My guess is they are either talking about a pat on the head ('rebranding' behavioural conditioning terms) or about to try and sell gratefulness diaries.

It's mind-body agenda so if/when autonomic dysfunction is found they infer or worse claim psychological uplifts 'cause it' and are treatment for it. Priming for when our heart rate is found to increase on over-exertion it is still somehow apparently best treated as a mind issue (rather than linked to actigraphy). Cynical me says I doubt these will be noted as such if they were things that also make a genuine difference (like taking away a financial issue or someone carrying your bags for you or doing a favour that helps exertion).

Anyway if it is self-report driving figures in what is hidden in their calcs then to me does this not just underline the 'eager to please'/trial influence issue of using a subjective interview: those who can be led to focus on nice things also might be over-optimistic in whether they've improved in that moment of interview. I'd love to see the detail inc. drop-outs and raw data too, given significant p score is under 0.05 and for 'lower mean intensity of behavioral uplifts (group difference = 0.14 (SE = 0.16); p = .043)'.

And the 'invite/enrollment' (ethics) e.g. who did they get to sign up and HOW? - were they led to think the objective data would be used differently, over trawling interviews and diaries etc? Particularly the time-specific patterns between the actigraphs/other events and heart rate. What is the 'daily waking' actigraphy anyway?

As an aside. The idea that patients should have the ins and outs of what they do and when monitored and rated churns my stomach. Goodness how they assessed as 'no differences' for all these things ('push-crash', healthy pacing). If it is all going to be about 'micromanaging the patient' and 'blaming us/head-patting us' where we are heading... I just despair. Nightmare treated like pawns Part II?
 
As far as I know Friedberg is not a BPS supporter, and I don't see a problem with this sort of study in principle.

But having recruited patients to participate in a 6 month study involving wearing actometer/HRV monitors and keep weekly symptom and 'hassle/uplift' diaries, it seems to me a great pity if they didn't at the same time take some biological specimens, even if only for bio banking for future analysis several times over the 6 months.

My problem is with the abstract which gives very little clue about the way they analysed the data on activity/ symptoms/ hassles and uplifts, and the basis for their conclusions on these.
And how did they assess improvement or non improvement over the 6 months?
Also what diagnostic criteria were used?

If anyone has access to a copy of the whole paper, can you let me see it privately?
 
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Andy said:
Conclusions
This study provided evidence for linking patient-reported non-improvement to a biological variable indexing autonomic dysfunction and a behavioral measure indicating a deficit in psychological uplifts. These findings suggest a possible marker of illness trajectory that could potentially advance the biomedical underpinnings of CFS.
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So...

1) Patients with more autonomic dysfunction report poorer health.

2) Patients with poorer health report fewer psychological uplifts.

Unsurprising, on both counts. Just how do we get from that to "These findings suggest a possible marker of illness trajectory that could potentially advance the biomedical underpinnings of CFS"? :confused:
 
Trish said:
As far as I know Friedberg is not a BPS supporter
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Looking through the publication history, that appears absolutely the case. My initial comment is therefore not supported. Reading the abstract in isolation (in the official journal of the American Psychosomatic Society no less) one might be forgiven for interpreting as I did.

The concluding proposal seemed so weakly framed, but I guess it was directed at HRV specifically, rather than the well-established autonomic dysfunction generally. Perhaps my own abnormal physiology caused an absence of psychological uplift as I read it...

I will edit my prior comment.
 
(I wrote this when the paper was briefly double posted, and so I didn't have the benefit of all of the foregoing comments.)

Friedberg, Fred; Adamowicz, Jenna L.; Bruckenthal, Patricia; Milazzo, Maria; Ramjan, Sameera; Quintana, Daniel

MEpedia said:
Fred Friedberg, PhD, is a research associate professor in the Applied Behavioral Medicine Research Institute at Stony Brook University, Stony Brook, New York, US, and a psychologist in private practice specializing in the treatment of CFS, fibromyalgia, and other chronic pain conditions. He is a provider of the treatment known as eye movement desensitization and reprocessing (EMDR).[1]

Friedberg is a founder and editor of the peer review journal: Fatigue: Biomedicine, Health & Behavior, the quarterly professional journal of the professional organization International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.[2] He serves as the current President of the Board of Directors of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis(IACFSME)[3] and represented the IACFSME as a non-voting Liaison Representative at the Jan 12 & 13, 2017 Chronic Fatigue Syndrome Advisory Committee meeting for the U.S. Department of Health and Human Services.
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Friedberg is President of IACFSME. He's been working on ME/CFS for decades - he's supposed to be on our side and he should understand the issues better than most. I find this paper annoying for several at least five reasons.

One is that he had 148 ME/CFS patient keep weekly diaries and did weekly heart monitoring for 6 months and 3 months of daily waking actigraphy. That is a great deal of effort from patients. And yet the article is paywalled - most patients won't be able to read it.

The article is published in 'Psychosomatic Medicine'. And it's not there fighting stereotypes for us. The abstract is vague, but certainly there is scope to read it as saying that the reason why people with "CFS" don't recover is because of a behavioural problem of a 'deficit of psychological uplifts'.

And yes, "CFS"? Seriously? Surely Friedberg knows the term most accepted by people with ME/CFS is ME/CFS? I suppose the bias is right there in the name of the IACFSME.

There's the patient blaming language of '"push/crash", not as bad as boom and bust, but still suggestive of doing something wrong, when typically the 'push' is just the normal tasks of daily living. And the minimising language of 'hassles'.
Abstract said:
but no significant differences in any activity pattern, including push-crash, limiting activity, and healthy pacing.
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'Healthy pacing'? Healthy according to who? There was no difference found in reported recovery from these three so-called patterns, so, in what way is 'healthy pacing' more healthy than resting more when needed, or getting what needs to be done done sometimes? It's quite a significant finding - that broad management approaches don't guarantee recovery, and so people with ME/CFS should just do what works for them, and not worry too much that they aren't doing the right (healthy) thing. But that finding could have been presented in a much more useful way.

Then there's this deficit of 'psychological uplift'. Correlation is not causation Fred. It shouldn't be surprising that people who feel that they have improved over the study period are experiencing a bit more joy than those who aren't, or who are deteriorating. And it's not as if the difference is strong. With a p value of .043, it only scrapes in as significant. I wish we could see a scattergram of that or understand what the scale is, but we can see the mean difference is 0.14, and the standard error of the difference is 0.16. That is, quite often, people who didn't improve reported more or basically the same number of psychological uplifts as those who did improve. There's no way that 'psychological uplift' is a 'possible marker of illness trajectory'.

It's such a shame that what could have been a study rich with insights is instead churned out as just another abstract that can easily be read as 'ME/CFS is perpetuated by an inability to find joy in life'.

I can't understand why Fred Friedberg continues to be president of IACFSME. Is he elected?

(I'd just add, that Fred Freidburg's stance on the biomedical nature of ME/CFS is not at all straightforward and he is the Editor of the IACFSME's journal 'Fatigue' which recently published Crawley's latest paper.)
 
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Just so we know who we are dealing with, here's Daniel Quintana's biography - he's the senior author on this:
Daniel S. Quintana is a Senior Researcher at the Department of Psychology, University of Oslo. He leads a lab investigating biological systems that link psychological and social factors to health, with a focus on neuroendocrine systems (e.g., oxytocin) and the autonomic nervous system. His lab uses various research approaches, including intranasal oxytocin trials, large-scale genetics studies, neuroimaging, and the collection of autonomic nervous system data (e.g., heart rate variability).

Daniel is the Principal Investigator of externally-funded projects investigating the role of the oxytocin system in mental traits and physical health (Research Council of Norway), the role of oxytocin in behavioral flexibility (Research Council of Norway), and an oxytocin treatment trial to improve social skills and behavioral flexibility in youth with autism (Kavli Trust).
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Ravn said:
So...

1) Patients with more autonomic dysfunction report poorer health.

2) Patients with poorer health report fewer psychological uplifts.

Unsurprising, on both counts. Just how do we get from that to "These findings suggest a possible marker of illness trajectory that could potentially advance the biomedical underpinnings of CFS"? :confused:
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I don't know why those interested in mental health or psychology can't just be happy/see it as sufficient part for them to play to point out that those with autonomic dysfunction should be treated better ie the lack of psychological uplifts is a harm in itself. If mental health matters, and there is only so much psychological onslaught a human being should take. Input into making the world better towards people.

Is there an assumption the reporting of these is 'perception of' rather than objective number of uplifts, because otherwise it is documenting one half of what the stigma does. SO people are ill and get this. And we could probably all run down ideas such as destigmatisation that would be a good start to ameliorating this.

Why do the conclusions then turn on its head both what results actually show and what psychology is supposed to be.
 
after all we have seen done to the curent attacked diseases and all that we know about history, i have come to believe that making the world better is not the result, in practice, of many of the psych* fields. experimental included.

regardless of intent or beliefs, or incidental good done, it is in practice as if whatever forces cause them, reliably turn them into makers of weapons, prisons, garbage bins, moral inversion, outgroups, medical delay, scientific regress.

were tehre a lot of true believers in andropov's sluggish schizophrenia? i'd guess so but would want to know. dogs of teh state. even if kindly.

i don't think it's like "any tool can be used for good or evil" but more "these fields are particularly bad at good, or good at bad".


frequently, it's not clear what participants' beliefs even are. what is their ontology --- some kind of incoherent dualism?

the primacy placed on their own field seems frequently like hubris. frequently delusional.

what is their behavior to diseases? i think this is a more tractable and germane question than beliefs.


collective responsibility strong. good eggs with truth seeking and good seeking do not erase that.


victim groups change, with stragglers, but the existence of victim groups remains.
 
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