Caught up in Care: Crafting Moral Subjects of Chronic Fatigue, Risor and Lillevoll, 2021

They talk, in the abstract, about chronic fatigue only, but the patients they discuss have gone through a "CFS/ME" assessment, so may or may not have ME.

Open access, https://www.tandfonline.com/doi/full/10.1080/01459740.2021.1883011

This part possibly explains a bit more clearly what the authors are actually talking about in this paper.

Paragraph breaks added for easier reading.

 

simple breakdown would be how doctors perceive the patients actual predicament patients who cannot physically fit in with the external demands the world places on them must improve by doing the opposite of what the body actually needs ie rest and time to heal . our societies do not tolerate those who are not capable of being financially productive perhaps some circle view such patients as a threat to productivity . just rambling which seems appropriate with this paper .

 

This is how they describe the CFS/ME-team's interdisciplinary approach to "pacing"

The patient's stories are sad to read. The shame and self blaming of not being able to live up to society's and one's own expectations of activity and productivity.

 

There's a lot of jargon, but some interesting observations that are worth reading about. This bit interesting:

This recommendation that we "put some time aside for joy" is one many of us have received. And sometimes, its innocent. But there's a kind of dark side to it, that somehow you're not doing things right... or even worse, that somehow you've made yourself sick by not being "happy" enough.

I liked the discussion on this issue, and it made me realise how inappropriate it is for therapists to prescribe what sort of activity the person should prioritise. That should be based on their values, shouldn't it? If you're desperately worried about your job or your children's welfare, then why would you waste your limited energy to do innane but "happy" things - and is that really going to make you happier in the long run, if it means you deal even less well with the things you really value? Okay, so maybe a supportive person can help you think through your own priorities, and address the guilt, but then the final decision has to be yours.

Negatives:
* A lot of talk about "agency", which was jarring, because I felt the patients were being talked down to with the "advice" they were given, and their role as active agents in coping with their limitations was undermined. Directing people on how to do their daily activities in order to "give them agency" seemed to me arse about face. It might (or might not) give people some relief, but not agency - which can surely only come from helping them to discover what works best for them. You could really hear how the patients were sick and tired of being "instructed".

* Narrative approaches in general are starting to emphasise the idea of groups having ownership of their narratives, and participating actively in the research process. So for example, it would be considered inappropriate for a white person to singlehandedly interpret the narratives of black people - they would be expected collaborate with black researchers. Likewise for LGBTQ narratives - a straight person singlehandedly interpreting these narratives would be seen as well below standard. So why doesn't this apply to people with chronic illness? Why should our personal stories be "colonised" by healthy people, and subject to all their judgements and assumptions about us? It struck me that this really does need to change.

* There is no talk at all about the authority with which the various types of activity advice were given. But that's huge. We know that much of this stuff is just made up by the therapists because they like the idea that it might work (sleep hygiene, balancing out boom and bust etc.), but in this setting its delivered as scientific and authoritative, so that puts the patients in a position where they have to be seen to respect it at some level, even when it clearly doesn't work for them.

 

There is something very distasteful about something like this published in 'Medical Anthropology - almost as if it is a visit to the zoo. It stinks of busybody voyeurism. A study like this is only ethical if it is part of a valid piece of practical clinical research suitable for a medical journal.

Trying to unpick motives and interactions seems to me fine as long as it starts from premises relevant to reality. Like we have a group of health professionals who have no idea whether what they are doing is positive or negative. We also have a group of people who deliberately mislead by calling graded activity pacing. And so on.

At least the study may expose the fact that all is not so rosy in the rehab garden.

 

It seems that nowadays everything has to be said in a simple soundbite. "Make time for Joy", 4 words ideal, yet the practical concept is totally lost by the brevity and it ends up being useless except 4 words fits into a questionnaire.

Even after all these years I feel guilty using scarce energy to do something I enjoy rather than something that needs doing. I love getting my paints out and playing but that 5 minutes could be spent tidying the washing away. No one is forcing me, my husband does the chores gladly enough but I feel so much guilt anyway.

Especially when I had more energy I could have done with someone telling me it was ok to do things I liked at times.

Years ago an ME patient wrote a book about how to live with a chronic illness. It really helped me. She said to get pleasure from as many things as possible that were within what you could do, like having comfortable clothes and food you like.

But it took a whole book and discussing with patients things they would like to do is the priority.

One of the problems with the PACE trial was the 30 minute walking. It is such a useless activity. Cooking a meal involves the whole body moving including a cognitive component. Much better way to use energy and get exercise.

 

Exactly!

The focus should be "What is important to YOU?" and "How can we make that happen"?

I'd hate to have to follow a set activity programme by a therapist. I'll be able to do more in total when I am free to follow my own pace, by continuously adjusting activities according to the fluctuating level of functioning.

 

In some ways I think there's a place for reminding people to keep some sort of life balance between what you have to do and what you would like to do. This is where the lack of recognition for patients with Long Covid who might go on to develop ME could benefit as I could have benefited when first diagnosed. I cut everything I could out of my life to carry on working where support of cutting back on my work so I could still have some sort of a life would have improved my quality of life.

When someone is maxed out by the simple chores of daily living such a brushing teeth or making their own meals the advice is insulting and trivializing. As someone who has lived & cared for a disabled person when I was growing up & long before I became ill I can tell you now, a healthy person simply cannot fully understand what life at that level of disability is like. Any more than I can fully understand what childbirth is like because I've never experienced it. i can imagine but that's not the same.

I am so far beyond listening to the perceived wisdom on "joy", "acceptance" & finding meaning drivel that so called experts spout. I maintain that when it comes to finding joy and meaning in the very small things, when it comes to acceptance of the difficulties life throws at you and yet still you can find joy and meaning then there isn't a patient on here who couldn't teach an advanced class.

As @Woolie put it so succinctly on a different thread: I say to these people F**k Off!

 

I feel that @Woolie 's points and some others made above deserve a wider and more diverse audience.

 

That's problematic because all those important things are things anyone working in a BPS mindset can't impact, so that makes them useless in the process. Which is true, but it's not the answer they want. They don't want to know what's important to us, they want to address things important to them by making them important to us in the process. Like arts & crafts in a prison camp. Fine for the children, insulting when foisted on the adults. Which is all they can do.

They genuinely don't understand that the needs are all primary, the lowest rungs of Maslow's pyramids. But they don't care what the needs are, what they care is what they themselves can do, not about the needs, but about their wants. Not for us, for them. So they spend all this time making what's important to them also important to us, never caring that none of those things are. It's not about us, it's entirely about them, they built the whole BPS thing this way.

 

So true!

And it brings so many absurd situations where you don't even know where to start regarding explaining, so you just don't. Like when a housebound friend of mine was adviced to go out on the town and have some wine with her girlfriends. And me receiving advice on which shoes I ought to wear for walking, whilst being bed bound.

But their job is to offer us .. something.. and something has indeed been offered us. If we're not willing or able to be helped by this, the fault must be ours. They've certainly done their bit.

 

Surely it's much more helpful for people with ME to help them find ways to reduce their load of energy demanding activities, including enlisting family to help out more where possible, provision of aids, ensuring they get benefits and home care they are entitled to, and help them work out for themselves how to balance their activities so as to avoid setting off PEM. No judgement should ever be made on which activities the person chooses to set aside or do differently. Nor should pressure be put on them to do activities others describe as joyful. quoting Trish .. yes but all this assumes that the state actually cares about your wellbeing and wants to provide the necessary resources when 30 + years tells me the state ie uk government want to abandon all sick and disabled people in the name of savings . how do you get post to keep the spacing that you want .?

 

What device are you using?

I just hit the return key and that drops the cursor down a line.

 

thanks i never really learned how to use a keyboard so the really obvious things never enter my head especially when needed

 

who would want that job it would require stamina and hard work dealing with the sociopaths in the d w p .

 

The use of activity timetables just shows how out of touch with the realities of ME these therapists are. I can never predict what I can do on any day or at any time of day.

Since lockdown last year I have to make a list for the food we will need for the week so my husband can go shopping on a Monday. It would be very useful to be able to do a menu then I would not run out of things by the weekend but it is impossible to do no matter how much I want it. Thursday may be fish but if my stomach doesn't want it or I am too tired to do it that's that.

What a strain it must be to feel you have to do something joyful at 3 o'clock