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.

 

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?

 

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.

 

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

 

As per rvallee
"Funding. The project described was supported by National Institutes of Health Grant R01NR015850"
EDIT - Hope Solve et al challenge this?

 

Ditto.

 

Yes, why are the biomedical-leaning members and attendees of this group's conferences etc., not rising up in protest?!

 

This is surprising, given the direct connection with the IACFS/ME.

 

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!

 

Agreed.

 

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"

 

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.