A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs, 2020, Pilkington et al

Invisible Woman said:
Bolding mine.

Am I being particularly obtuse here?

If they don't listen in the first place how will they be able to help with the physical symptoms? Especially if they just make knee jerk attributions to the causes of those symptoms.

If I want a therapist I'll book an appointment to.go.see one. I want my doctor to be my doctor not just bl@@dy sit there with an empathetic look on his face while listens but does naff all to help. Otherwise I might just as well stay home and talk to the dog. An excellent listener - unless he needs to tell me it's dinnertime.
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They don't seem to understand that the only reason paying attention to what the patient is saying is useful is so that the actual problem will be understood, rather than some other thing being anchored and never let go of. Literally no point in someone "listening" but then showing they are clearly not listening by saying something like "actually, the symptoms aren't that important" about someone who only needs that to be addressed and nothing else.

You're definitely right here, classic Dunning-Kruger again.
 
Personally, i don’t want anybody to hold my hand and telling me i need to meditate, do yoga, and tells me what to eat. i want to know what clinical trial i am eligible for, i want yearly specialist appointment so i am not left to rot or left with a family dr that is only interested in refilling my prescription and my cancer screenings.
 
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Invisible Woman said:
I want my doctor to be my doctor not just bl@@dy sit there with an empathetic look on his face while listens but does naff all to help.
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When I got a copy of my medical notes it was noticeable that the term 'patient reassured' cropped up a lot. So I figure that they consider it 'job done'.

This so-called false 'reassurance' helped no-one. (I would have preferred say if they'd actually read test results correctly and conveyed the results to me correctly; not considered pleas for help due to a worsening condition as psych based attention seeking, I could go on....)
 
Andy said:
Don't know if you received a response @cassava7 but the article has been revised broadly in line with your requests, https://evidence.nihr.ac.uk/alert/cfs-me-people-want-personalised-empathetic-care/
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They replied quickly, although they first changed the title to "People with debilitating fatigue". I sent a second mail and then they changed it to "People with chronic fatigue syndrome".

Unfortunately, as @Simbindi pointed out, they did not remove "People with CFS/ME are exhausted for no reason".
 
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