Uplifts and hassles are related to worsening in chronic fatigue syndrome A prospective study, 2023, Friedberg et al

Background: Limited published data suggests that absence of uplifts (minor pleasant events) is associated with clinical worsening in patients with chronic fatigue syndrome (CFS). The current study aimed to assess the relation of illness worsening to the trajectories of social and non-social uplifts and hassles in a six-month prospective study in CFS.

Methods: Participants were primarily in their 40s, female, white, and ill for over a decade. All participants (N=128) met criteria for CFS. The interview-based global impression of change rating was used to classify individual outcomes as improved, unchanged, or worsened at six- month follow-up. Uplifts and hassles, both social and non-social, were assessed with the Combined Hassles and Uplifts Scale (CHUS). The CHUS was administered weekly in online diaries over six months. Linear mixed effect models were utilized to examine linear trends for hassles and uplifts.

Results: No significant differences were found between the three global outcome groups for age, sex, or illness duration; however, work status was significantly lower for the non-improved groups (p<.001). Non-social hassles intensity showed an increasing slope for the worsened group (p=.03) and a decreasing slope (p=0.05) for the improved group. For the worsened group, a downward trend was found for frequency of non-social (p=0.01) uplifts.

Conclusion: Individuals with worsening as compared to improving illness in CFS show significantly different six-month trajectories for weekly hassles and a deficit in uplifts. This may have clinical implications for behavioral intervention.

https://www.researchsquare.com/article/rs-2865400/v1

 

"criteria for CFS" = Fukuda

 

But when pwME are heading downhill, they're no longer uplifts, are they? By definition, they're now hassles.

Jaysus, this is basic stuff.

 

Quote from the paper:

"Uplifts can be a focus of behavioral management [12] if the clinician collaboratively identifies with the patient pleasant, enjoyable, low-effort activities that are often lacking in the lives of individuals with debilitating CFS [31, 32]. This may have relevance to CFS pathophysiology given that a large biobehavioral study in healthy adults suggested that the absence of positivity in daily life may be particularly consequential for inflammation [6]. Examples of positive events that could be applied clinically in CFS include listening to an inspirational speaker, going to a concert, watching ducks on a pond, sharing a special moment with a spouse or friend, or any other moderately pleasant activity that does not trigger long-duration symptom worsening."
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lol what a joke, they all would trigger worsening & a concert would be beyond my wildest dreams !

an inspirational speaker pukesville

oh, wait....... listening to David Tuller @dave30th gives me considerable uplift but i dont suppose thats what they mean

 

Agreed.

 

This is basically just redefining disability as bothersome. Which is the same as not understanding disability, as there's nothing hard about it. Same old tripe, completely devoid of any intelligence or humanity. All on the basis of "we don't believe you", over a century of the same tripe in loops. Frankly, it has to be said but this is getting into mental illness territory. It's not normal to keep pretending this is "promising" or any valid, it's playing into an obvious delusion about the world.

For some reason, second study on the same theme: Non-improvement in chronic fatigue syndrome: relation to activity patterns, uplifts and hassles, and autonomic dysfunction, 2022, Friedberg et al.

 

In a sense this is basically discovering about PEM and fluctuating, but being completely unable to process it and attributing it to some preferred belief instead. This is the essence of what the answer to life being 42: if you ask the wrong questions, you will get equally wrong answers.

None of this is hard, most of what they memorize is simpler than this. It's all human failure. All of it, the same ugliness in human nature that sees no problem with treating millions of people like disposable garbage, or destroying entire habitats because "it's just business". They hide behind cheap questionnaires to rationalize what they, but the behavior and intent are the same.

 

Totally agree with the comments above about the study objectives and findings.

Ughh. Granted, data collection started in 2016 but this PI certainly knew then that PEM was the hallmark symptom. What worries me more is it's still being used in new studies including in Long COVID studies where they are evaluating ME cases in LC cohorts. Makes a mess of cross-study comparisons and the conduct of systematic evidence reviews of any treatments tested.

Edited to add - To be more correct, I know of at least one LC study that used Fukuda and also an ME researcher recommending to LC researchers that Fukuda be used to select ME cases. NIH's Common Data Elements (CDE) guidance is still that that's okay.

 

O gee whiz, if only patients had thought of doing the nice things they can still do in a flexible schedule and enjoy the little things, they would have gotten better! Help is coming, duck-watching treatment, hoorah! /s

Apologies for the sarcasm, but the absolute arrogance and disableism from people without any actual lived experience with this disease (or others like it), who think they can tell patients how to deal with life with their illness and come up with harebrained, patronising and simplistic shit like this never ceases to anger and flabbergast me.

Especially this one, as this is basically how patients with unsupported lifechanging illness survive.

Yes.

 

This really is garbage. Not just scraping the barrel but pouring stuff back in from a different barrel so you can scrape some more.

 

The mechanism behind the belief in psychosomatic illness appears to be that uncontrolled severe illness causes feelings of hopelessness and despair. This makes the belief that there is a very simple thing that can be done to cure or control the illness so attractive.

An industry has grown to serve this illusion of control, tirelessly proposing models of illness causation that reverse the true direction of causation so that negative thoughts and emotions are seen not a consequence of illness but its cause.

As the illness fluctuates so does the mood, and this can also fuel these psychosomatic misinterpretations.

 

I can't believe that Friedberg keeps getting funding for this kind of stuff, from the NIH no less. The NIH must have money to burn, it seems.
The frustration I feel about this adds to my pile of hassles.

Don't think it helps patients much.

 

Oh wow not kidding, the NIH did fund this garbage:

Every BPS solution takes the form of some recreational time off: enjoy pictures of animals, take a walk, hang out with friends, finger paint, sing. It's all kindergarten recess stuff, and somehow they're still not sure if it's useful after decades of pretending it "may" be useful, when really they were simply saying whatever they wanted to be true. Medical institutions will fund garbage like this but not replication studies, or preliminary studies, or barely any studies at all. But they will give you money if you condescendingly treat a patient population made of millions like we're bored toddlers.

I haven't found anything impressive out of this IACFS or whatever. I guess that explains it.

The ducks in a pond almost feel like trolling. We sure are watching quacks, quacks everywhere.