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

[Andy]

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

 

[Andy]

"criteria for CFS" = Fukuda

 

[Kitty]

Limited published data suggests that absence of uplifts (minor pleasant events) is associated with clinical worsening in patients with chronic fatigue syndrome (CFS). ... 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.

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

Jaysus, this is basic stuff.

 

[Trish]

https://unit3and4psychology.files.wordpress.com/2016/11/hassles_and_uplifts_scale.pdf

The Hassles and Uplifts Scale
HASSLES are irritants—things that annoy or bother you; they can make you upset or angry.
UPLIFTS are events that make you feel good; they can make you joyful, glad, or satisfied.
Some hassles and uplifts occur on a fairly regular basis and others are relatively rare. Some have only a slight effect, others have a strong effect. This questionnaire lists things that can be hassles and uplifts in day-to-day life. You will find that during the course of a day some of these things will have been only a hassle for you and some will have been only an uplift. Others will have been both a hassle AND an uplift.

DIRECTIONS: Please think about how much of a hassle and how much of an uplift each item was for you today. Please indicate on the left-hand side of the page (under “HASSLES”) how much of a hassle the item was by circling the appropriate number. Then indicate on the right-hand side of the page (under “UPLIFTS”) how much of an uplift it was for you by circling the appropriate number. Remember, circle one number on the left-hand side of the page and one number on the right-hand side of the page for each item. PLEASE FILL OUT THIS QUESTIONNAIRE JUST BEFORE YOU GO TO BED.

How much of a hassle was How much of an uplift was this item for you today? this item for you today?
HASSLES UPLIFTS 0 = None or not applicable 0 = None or not applicable 1 = Somewhat 1 = Somewhat 2 = Quite a bit 2 = Quite a bit 3 = A great deal 3 = A great deal

DIRECTIONS: Please circle one number on the left-hand side and one number on the right-hand side for each item.

There follows a list of 53 items to be decided how much of a hassle and/or uplift each was that day.
The include lots of aspects of daily life - taking a few at random:
5. Time spent with family
15. Your work load
27. Your physical appearance
30. Your medical care
35. Your environment (e.g.,, quality of air, noise level, greenery)
48. Recreation and entertainment outside the home (e.g., movies, sports, eating out, walking)

I agree with Kitty - when health worsens, even things that would be pleasures when well become hassles or impossible.
How 'behavoural intervention' would make any difference to any of this beats me.

 

[Sean]

How 'behavoural intervention' would make any difference to any of this beats me.

When your only tool is a hammer...

 

[Trish]

From the discussion - their suggested behavioural intervention:

Although not an intervention or controlled trial, clinically relevant findings in this observational study suggest the potential importance of uplifts to perceived global improvement in this difficult-to-treat illness. 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. To generate ideas, the patient can be asked to make a list of 10 pleasant low-effort activities. Once these possibilities are identified, a flexible schedule is developed so that the patients can participate in pleasant activities at least several times a week.

They then go on to suggest Behavioral Activation and Acceptance and Commitment Therapy which they say help patients to identify their own values and what activities and relationships they enjoy or not.

Furthermore, by encouraging patients to focus on chosen values, it is possible that they may also be less likely to be bothered by hassles, which were significantly greater in our worsened subjects. Both Behavioral Activation and Acceptance and Commitment Therapy have also been found to be associated with improved well-being [35, 36]. This may explain why in the current study, improved subjects experienced significantly less intense non-social hassles than their worsened counterparts. Future work should continue to examine the effect of improving the frequency of uplifts, or values, in patients with CFS on physical and emotional well-being.

Conclusions
Given the controversies regarding the efficacy of well-publicized graded activity interventions in CFS [37], our alternate or perhaps complementary focus on behavioral uplifts and hassles as possible improvement predictors may be clinically useful. For instance, one path to behavioral improvement in CFS that is supported by our findings may be through the scheduling of more frequent non-social uplifts, and perhaps reducing the emotional impact of intense hassles (cf., [11]). These commonly experienced minor events can be voluntarily modified and therapeutically managed, with less potential adverse consequence than standard behavioral approaches in the service of improving well-being and outcomes in CFS.

That seems to me incredibly simplistic. [Edit: And insultingly patronising] Surely all of us can identify what makes us feel happier and what we find stressful without needing therapists to tell us. And we know perfectly well which activities and people are draining and which give a bit of a lift. And of course if we can we adjust our lives to include some things we still can enjoy without detriment if possible.
I don't see how any of that will lead to improvement in health.

On the other hand, provision of safe, affordable and appropriate housing, mobility aids, secure finance, accessible medical, social and personal care, healthy manageable food etc. might actually give us the chance to pace properly and cope better with symptoms so we can actually do some activities that are uplifts rather than hassles.

 

[ME/CFS Skeptic]

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."
​

 

[NelliePledge]

Wow do these people think they are our parents!!!


Eta. I’m likely old enough to be their parent

 

[JemPD]

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."

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

 

[DokaGirl]

Wow do these people think they are our parents!!!

Agreed.

 

[rvallee]

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.

 

[rvallee]

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.

 

[Medfeb]

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

"criteria for CFS" = Fukuda

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.

 

[NelliePledge]

Instead of x hours of ACT many people could benefit from x hours of practical support eg with advocacy to deal with financial or accommodation hassles or in getting shopping, cleaning, etc etc. do that and any energy freed up is available to do whatever the PWME chooses to do

 

[Arvo]

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. To generate ideas, the patient can be asked to make a list of 10 pleasant low-effort activities. Once these possibilities are identified, a flexible schedule is developed so that the patients can participate in pleasant activities at least several times a week.

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.

Wow do these people think they are our parents!!!

Yes.

 

[Hutan]

Just in case anyone is not aware, the lead author is Fred Friedberg of Stony Brook University Renaissance School of Medicine. He has been the President of the IACFS/ME (yep, the International Association of CFS/ME) for years, and has just been re-elected. He has a track record of producing poor research, including a puff piece for what is surely a quack treatment. Oh, and he runs the IACFS/ME Journal that published one of Crawley's studies.

It beggars belief that he is still there, still churning out patronising twaddle.

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."

Never mind watching the ducks on a pond, I find what we do here on S4ME, highlighting the quackery, a moderately pleasant activity.

 

[Jonathan Edwards]

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].

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

 

[Hoopoe]

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.

 

[Willow]

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.

 

[rvallee]

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

The project described was supported by National Institutes of Health Grant R01NR015850

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.