Patients’ hopes for recovery from myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS): Toward a ‘recovery in’ framework. (2018) Jason

[Cheshire]

Devendorf, A. R., Brown, A. A., & Jason, L. A.
Chronic Illness

Objective
There is no consensus on recovery from myalgic encephalomyelitis and chronic fatigue syndrome, which has spawned debates when interpreting outcome research. Within these debates, the patient voice is often neglected. This study aimed to understand how patients conceptualize recovery – regarding the definition and possibility of recovery.

Method
We conducted in-depth, semi-structured interviews with 10 older (above age 50) female patients with myalgic encephalomyelitis or chronic fatigue syndrome. Data were analyzed using a deductive thematic analysis.

Results
Our sample viewed recovery as functioning without fear of relapse, returning to previous roles and identities, and achieving a sustained absence of symptoms. Participants expressed skepticism that reaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome exists but working toward significant improvement through coping is a viable goal. Although many accepted they would never reclaim full functioning, participants continued to experience uncertainty about their future with unclear prognostic goals and limited treatment options.

Discussion
Recovery is more than just symptom reduction. Outcome research should incorporate well-being measures like identity, meaning and quality of life, and personal empowerment to enhance recovery definitions. When communicating treatment goals, providers might convey cautious optimism for complete symptom remission, while emphasizing that living a fulfilling life through effective coping strategies is possible.

Paywall
https://journals.sagepub.com/doi/10.1177/1742395318815965

 

[Barry]

Recovery is more than just symptom reduction. Outcome research should incorporate well-being measures like identity, meaning and quality of life, and personal empowerment to enhance recovery definitions.

The best way to enhance recovery definitions is to include within those definitions ... recovery from the illness.

 

[NelliePledge]

Interesting to see older patients being involved in research

 

[Invisible Woman]

Outcome research should incorporate well-being measures like identity, meaning and quality of life, and personal empowerment to enhance recovery definitions. When communicating treatment goals, providers might convey cautious optimism for complete symptom remission, while emphasizing that living a fulfilling life through effective coping strategies is possible.

Bolding mine.
This whole thing is semantics. Use plain, clear English and be entirely unambiguous with the patient. Don't make vague optimistic half promises.

Personal empowerment? Patronizing bullshit.

As for the bit in bold -..... that might be true for some, but certainly not for many. Sounds manipulative - like something nice and positive you'd say to someone to shut them up. If they disagree and won't stop whinging about being housebound or bedbound, then you can claim it's their own attitude holding them back.

I want outcome measures like being able to do the following without payback or having to wait until having a good day

- Showering

- Preparing and eating a meal

- Being well enough to go to the doctor when I'm ill, rather than have to wait till I'm well enough.

- Being able to go for a walk for x distance and/or minutes

- Being able to go to the shop by myself.

And a whole host of others. Objective, clear, definable measures. Preferably measurable ones.

 

[Invisible Woman]

Interesting to see older patients being involved in research

Forgive my cynicism, but they are an easier sell for what's listed in the discussion section. Younger people are more likely to be demanding return to careers, working full time, having families.

 

[Andy]

Interesting to see older patients being involved in research

From what I can remember from reading various papers typically patients up to the age of 60 are accepted for ME research, why this particular paper would seem to have recruited exclusively older patients would perhaps be explained in the full text.

 

[JemPD]

Results
Our sample viewed recovery as functioning without fear of relapse

my emphasis.
I admire Jason, but he doesn't seem to be very savvy to the BPS twisting juggernaut... it'd be better if it said without relapse, rather than without fear of it, since i'm pretty certain that's what they meant.

living a fulfilling life through effective coping strategies is possible.

Really... because i use all the coping strategies out there (to my knowledge) & my life is not at all fulfilling, it's shit. Sorry to be blunt & negative but it is. I'm enduring it wholly because i refuse to traumatise my loved ones by ending it.
I mean i know it's possible for some, even many, but it should be made clear it's not possible for all.

 

[JemPD]

I was so irritated that i dashed off that reply without reading the thread....

Bolding mine.
This whole thing is semantics. Use plain, clear English and be entirely unambiguous with the patient. Don't make vague optimistic half promises.

Personal empowerment? Patronizing bullshit.

As for the bit in bold -..... that might be true for some, but certainly not for many. Sounds manipulative - like something nice and positive you'd say to someone to shut them up. If they disagree and won't stop whinging about being housebound or bedbound, then you can claim it's their own attitude holding them back.

I want outcome measures like being able to do the following without payback or having to wait until having a good day

- Showering

- Preparing and eating a meal

- Being well enough to go to the doctor when I'm ill, rather than have to wait till I'm well enough.

- Being able to go for a walk for x distance and/or minutes

- Being able to go to the shop by myself.

And a whole host of others. Objective, clear, definable measures. Preferably measurable ones.

Precisely

The best way to enhance recovery definitions is to include within those definitions ... recovery from the illness.

Why are psychologists seemingly so obtuse about this

 

[Seven]

Bolding mine.
This whole thing is semantics. Use plain, clear English and be entirely unambiguous with the patient. Don't make vague optimistic half promises.

Personal empowerment? Patronizing bullshit.

As for the bit in bold -..... that might be true for some, but certainly not for many. Sounds manipulative - like something nice and positive you'd say to someone to shut them up. If they disagree and won't stop whinging about being housebound or bedbound, then you can claim it's their own attitude holding them back.

I want outcome measures like being able to do the following without payback or having to wait until having a good day

- Showering

- Preparing and eating a meal

- Being well enough to go to the doctor when I'm ill, rather than have to wait till I'm well enough.

- Being able to go for a walk for x distance and/or minutes

- Being able to go to the shop by myself.

And a whole host of others. Objective, clear, definable measures. Preferably measurable ones.

This is a pet pieve of mine becuase I would be cured by this I can do X again.
Cure is go back to pre illness ability to generate energy and not energy management needed.
Live is not designed in any way for energy mananagement. So we shouldn’t have to. If you do not have legal standing, how will you survive on real world?
Work “sorry I cannot work 8h without a nap at noon”. Or airport sorry I cannot stand in line for longer than 2h at the time, to clear immigration”
I was called to jury duty “ Sorry I cannot stand everytime you need me to” and so on...
If you need a acomodationes of any kind, we need to be protected legally so we have something to show for it, when it is needed on real world. Not everybody will take your word for it.
I would be recover from all the definitions I see out there ( becuase I got out of bed) but I ma far from!!! I want my whole
Life back.

 

[Mij]

Let's focus on taking preventative measures from becoming worse instead of 'recovering'? I think this is a more realistic approach.

 

[Seven]

Here is the thing, we have to be careful as a community what we ask for. Becuase if we get mangement of symptoms not to become worst, what does that mean on the realistic side for the day to day=
Does work have to let you work only 2h a day and not fire you for not being disable.
How do we resolve this half limbo situation where we are protected so you can work what you can and then covered what you cannot.
Strudents accommodation for colleges and regular school.
Whatever we say is ok. Has to be translatable to real live laws and insurance acceptance or is not real.
If I have to Do pacing and as a community we say that is acceptable, then the money has to follow also, if not people will be indirectly put in a posistion of not being able to do the pacing BecuSe sounds great in theory but is not realistic.
So as a group we have to be careful what we accept as ok if it does not translate into practical application, becuase the issue comes with the money!!

 

[Barry]

Why are psychologists seemingly so obtuse about this

I think it's a sort of objectivity-blindness. They operate in a world where everything is subjective, and seem to end up with a very woolly interpretation of 'recovery', which in truth may be much more about better coping skills. I have no problem with helping people improve their coping skills, its very laudable, but I get annoyed when people pretend it's a cure, or even a partial cure. And especially dangerous if it lures people into potentially harmful activities.

 

[Andy]

As far as I can understand, he's tweeted the above because (my bold)

Article first published online: December 6, 2018; Issue published: December 1, 2020

 

[MSEsperanza]

The full text will be made "Free in PMC on Dec 1, 2021; PubMed "

Until then:

https://sci-hub.se/10.1177/1742395318815965