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

A significant uplift for me is researchers actually taking ME serious and investing in meaningful biomedical research aiming at improving the quality of life for people with ME and a regular hassle is the endless psychological research, often misnamed BPS, that was never going to produce meaningful answers, but is invariably misinterpreted in ways that make the lives of people with ME harder.
 
Andy said:
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
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Here we go again, I remember one from maybe a year ago using the same 'hassles and uplifts' - and I have big concerns that this is just reframing incidents that will cause PEM by throwing someone over their threshold, just like almost everything else about ME/CFS got reframed into something else that made less sense scientifically and logically but made it sound 'perceptual' or 'how you chose to receive it' or minimised it.

Such as attempts to reframe PEM into something inferring its basically just a word for being tired or having a migraine like a normal person ... after an exertion. Or calling us controlling in 25 different ways which I'msure is just a reaction/percetion from certain personality types who were around those with bad ME/CFS in those early days and didn't like someone saying 'if I do that it will send me over my threshold and make me ill' or 'can you turn the lights down please'.

So we can interpret these as showing that if you take people who have a really tight energy threshold and get a lot of punishment body-wise in return for that beign exceeded or harmed and then use a generic term like 'hassles' to encompass all of them that it is just showing we are more 'impacted/effected/get more consequences to our health' from such behaviours and issues. BUt sadly it is also a nice little way of dumping the entire paradigm not just of the condition but disability in general and certainly anthing related to energy-limited or chronic illness into a minimised bucket called 'hassles' instead of 'harms'. And that's naughty. BY any standards. It's basically marketing such a paper is doing by choosing such terms.

And they should be questioned because in the world of psychology any terms should have internal consistency and construct validity and I assume also as per the first rule of psychology being to 'exclude the situational' not actually describing something else entirely. Isn't it time we called this sort of thing out given you don't need research to prove how damaging it is, just like if someone with a broken leg found they were faced with stairs to get to the only loo in their workplace then these things wouldn't be 'hassles' and the outcomes of walking on said broken leg wouldn't be minimal either. What's wrong with using factually correct terms when they are already there and more accurate, why doesn't science require that to be used?
 
NelliePledge said:
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
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Did he really suggest ACT? So the punchline of this manifesto is the bigotry solution of a conversion course to make the disabled accept the 'hassle' aka whatever harms, consequences and inappropriate behaviour is bundled under that, so those who can't behave properly can what pretend the fact they don't/won't/can't accept the consequences of that on others are the fault of those others?

I'm starting to rumble and wonder whether psychosomatics isn't really about those targeted by it, but more about manifestos from those who have certain personality types that want to 'behave as they like' and disappear what has been time and memorial accepted and seen with people's eyes as consequences making it antisocial and inappropriate. If you can pretend those hurt are somehow ... what... just too something to get over what they wouldn't put up with for a second of having done to them (and I know enough to know how very sensitive they are to the same behaviour they dish out being returned to them) then it's just an issue of these problem people stopping them from living their lives without thought by daring to bear the consequences and if only they learned not to be hurt by it or people realised there was some 'moderating factor' like e.g. as if people had to be thinking wrong to get a bruise type thing all would be swell. The old pretend 'everyone else just needs to be less sensitive/easily hurt' manifesto again.
 
There's a whole ecosystem that facilitates this sort of ignorant subversion of the scientific process.

There's the university that allows Friedberg to keep operating and its ethics committee that approved the study. There's the fellow board members of IACFSME who continue to allow Friedberg to have a profile as an expert on CFS/ME or whatever you want to call it, and don't call him out when he produces stuff like this. They also keep the membership fees high so that informed people with ME/CFS can't afford to join and vote for a better President. There's the NIH with their bizarre funding of this study - I'd love to know who signed that off. It's hard to believe that Vicky Whittemore was involved.

There will be the peer reviewers - I see this paper hasn't got to a journal or peer reviewers yet. And the journal editors. It will be interesting to see if it gets published in the IACFSME journal (Friedberg is the editor).
 
Trish said:
https://unit3and4psychology.files.wordpress.com/2016/11/hassles_and_uplifts_scale.pdf


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.
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That whole section to me is a view inside the mind of disability bigotry.

shocking and I hope that some decent scientific psychologist, sociologists and studies of political rhetoric/populism start collecting this type of work as manifestos to study and what could be going on in the minds of those who think to write such things and the terrible influence for those who read them/are targeted by such propaganda
 
Hutan said:
There's a whole ecosystem that facilitates this sort of ignorant subversion of the scientific process.

There's the university that allows Friedberg to keep operating and its ethics committee that approved the study. There's the fellow board members of IACFSME who continue to allow Friedberg to have a profile as an expert on CFS/ME or whatever you want to call it, and don't call him out when he produces stuff like this. They also keep the membership fees high so that informed people with ME/CFS can't afford to join and vote for a better President. There's the NIH with their bizarre funding of this study - I'd love to know who signed that off. It's hard to believe that Vicky Whittemore was involved.

There will be the peer reviewers - I see this paper hasn't got to a journal or peer reviewers yet. And the journal editors. It will be interesting to see if it gets published in the IACFSME journal (Friedberg is the editor).
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If only some peers in the USA would have the courage to wheedle him out of the IACFSME. This professional mutual respect default should only go so far. Surely at some point they should look behind the curtain.
 
rvallee said:
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. :emoji_duck::emoji_duck::emoji_duck:
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As per rvallee
"Funding. The project described was supported by National Institutes of Health Grant R01NR015850"
EDIT - Hope Solve et al challenge this?
 
Peter Trewhitt said:
A significant uplift for me is researchers actually taking ME serious and investing in meaningful biomedical research aiming at improving the quality of life for people with ME and a regular hassle is the endless psychological research, often misnamed BPS, that was never going to produce meaningful answers, but is invariably misinterpreted in ways that make the lives of people with ME harder.
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Ditto.

:thumbup:
 
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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Why don't you stop telling me to watch ducks in a pond, medicine, and work on a drug that will let me live a meaningful life again? Do you know how it feels to suffer from ME? No. You don't and you refuse to listen. You want me to watch ducks? Take your stupid ducks and throw them to bottom of the ocean, where my dreams are!
 
Aside from being far too debilitated to even contemplate the journey to watch ducks on a pond, there are reasons why watching ducks on a pond could be a hassle, and not an uplift:

1) no pond nearby 2) no transport to a pond, 3) the pond is now a condominium development, 4) no ducks; they have died off due to pesticides, or habitat encroachment, 5) drought/ climate change has dried up the pond, 6) thousands of other pwME, having taken the same advice, are milling around the pond, making duck viewing impossible......

ETA: "too"
 
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I find that my illness fluctuates over time. The illness severity determines whether events are stressful or managable, activities are exhausting or enjoyable, and how I feel in general, and how well I'm able to organize things in my life.

So it's to be expected that generally more positive periods in my life would also correlate with being less ill. But I think that's because I'm less ill, not because there is some psychosomatic phenomenon going on. It's actually a somatopsychic phenomenon, the exact opposite.
 
About 30 years ago now, I needed a wheelchair and could only go out occasionally but I was getting down so I decided that I would plan for occasional treats. I remember going to some concerts in particular and some picnics in the park, about 1 every 4 weeks with a day in bed before and a few afterwards.

It made me feel much happier but my health did not change at all. My circumstances worsened and those days were over but I have since made sure there is always some gentle pleasure in my life even if just a plant on my windowsill. Life is better with "uplifts" but the disease is related to how much energy my body uses at any point, nothing behavioural.
 
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