Is there any systematic research into the “ lived experience” of people with ME?

Binkie4

Binkie4

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Is there any systematic research into the “ lived experience” of pwme. I am not familiar with any.

Also, has Nice collected ( or commissioned) any such research ( if there is any) on the “ lived experience” of pwme?

If not, it would seem there is a gap in the evidence being collected except that I doubt if it is Nice’s role to initiate research approaches . Qualitative studies seem sadly lacking.

Some work is being done with Oxford Brookes, isn’t it? I can’t remember the details. Unwell as well as foggy currently but there seems to be a large gap in the evidence if lived experience has not been studied.
 
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Binkie4 said:
Is there any systematic research into the “ lived experience” of pwme. I am not familiar with any.
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I am afraid it's called the 'Chalder Fatigue Scale' and the 'SF36'.
'Lived experience' is particularly beloved of the people who want to bend the evidence to suit their beliefs - the psychotherapists and physiotherapists of CBT and GET.

All the clinical research I have ever done was based on lived experience - asking patients if their pain is improved or whether their joints are stiff in the morning and so on. The idea that there is an 'alternative approach' of lived experience is to my mind a myth put out by those who find the results of systematic analysis inconvenient.
 
I was thinking about qualitative/ interpretive/ phenomenological research. Certainly not research done by psychologists. It would be systematic and analytical.

Chalder etc seem to translate everything into quantitative if they possibly can; “scale” is a clue. I ripped up the sheets last time I was presented with a Chalder scale to complete, well before David too.

I should be doing something else.

ETA: apology for abrupt ending
 
Binkie4 said:
I was thinking about qualitative/ interpretive/ phenomenological research. Certainly not research done by psychologists. It would be systematic and analytical.
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I am not quite sure what you are thinking of specifically. In my experience qualitative research is mostly done by psychologists and physiotherapists. Phenomenology is a psychological term and 'interpretive' in this context usually is the sort of interpretation psychotherapy uses.

If research is systematic it presumably has to be quantitative - what proportion of a group has a particular symptom etc.?

As I see it research is only any use to us if we can judge the probability of an observation on one person being relevant to others. Probability needs numbers, i.e. quantity. It can still be research about phenomenal qualities like pain.
 
My social science background comes into play here which of course does not include psychology.

If my brain were present I could write more but I think you would find the theoretical approaches in sociology very interesting from Weber onwards. Qualitative methods in sociology would include phenomenological approaches ( which I know you have a great interest
in).

The interpretive/ phenomenological approach developed in sociology from the 60s, 70s, 80s offers a way of studying man as an actor in and on the world. Of course sociology also offers quantitative methods but it’s the qualitative approach that seems to be missing in studying “ lived experience” in ME.
 
Binkie4 said:
The interpretive/ phenomenological approach developed in sociology from the 60s, 70s, 80s offers a way of studying man as an actor in and on the world.
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I am sceptical about this. An interpretation implies an attribution of cause and effect. To get reliable evidence of cause and effect you need controls for your observations to show that things might have been different. Sooner or later you need to quantify. Whenever I have seen people talking about 'qualitative research' I see people trying to evade the need for hard evidence in order to come to the conclusion they prefer.

I am very interested in the phenomenal but I don't think I buy in to 'phenomenal approaches'!
 
 
Binkie4 said:
Moderator note:
The first 8 posts on this thread have been moved from here.
____________________________________

Is there any systematic research into the “ lived experience” of pwme. I am not familiar with any.
Click to expand...

My personal opinion (based on 30 years of being ill with sudden onset ME) is that the International Consensus Primer is a fairly comprehensive write up on the lived experience of ME. Not only does it describe the experience, it breaks down into sections some of the likely causes of the symptoms we deal with.
 
This review paper by the Leonard Jason team might be of interest to you:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229648/

Patient Educ Couns. 2012 Feb;86(2):147-55. doi: 10.1016/j.pec.2011.04.016. Epub 2011 May 14.
A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome.
Anderson VR1, Jason LA, Hlavaty LE, Porter N, Cudia J.
Author information
1
Department of Psychology, Michigan State University, East Lansing, MI 48824, USA. ande1538@msu.edu
Abstract
OBJECTIVE:
To review and synthesize findings across qualitative studies on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS).

METHODS:
Articles were systematically reviewed and analyzed within a meta-analytic framework. Analyses included a multi-perspective examination of ME/CFS, as well as a comparative analysis of ME/CFS versus other chronic conditions.

RESULTS:
Thirty-four qualitative studies on ME/CFS were included. Findings include three substantive thematic areas that focus on: (1) experiences of people with ME/CFS, (2) experiences of physicians, and (3) themes that intersect both of these groups. For patients, illness development influenced identity, reductions in functioning, and coping. Physician-specific themes described lack of awareness about ME/CFS and recommended improvement in educational resources. Intersecting themes expressed issues with diagnosis creating tensions and fueling the stigmatization of ME/CFS.

CONCLUSIONS:
Findings indicate multilayered, context-specific experiences and ways in which both people with ME/CFS, as well as those involved in their lives (e.g., family or the medical community), interpret this illness. Future qualitative studies should recognize the various facets of the ME/CFS experience, the network members of people with ME/CFS, and the sociocultural environment through which the illness is understood.

PRACTICE IMPLICATIONS:
Health care professionals can gain unique insight from patient experiences, allowing for more accurate diagnoses and treatment recommendations.

Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

PMID:
21571484
PMCID:
PMC3229648
DOI:
10.1016/j.pec.2011.04.016
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My understanding of the point of "lived experiences" is that it's to capture the sort of information that researchers should have looked at but didn't, because they didn't feel it was important to have patient input into what was important and just went off their own thoughts, impressions, feelings, and theories.

No matter how good, the doctors and researchers will always miss stuff.

That's why meaninful patient inclusion in research is essential.

Otherwise there will always be gaps and stuff that patients are experiencing, but it's not "in the book."
 
Thanks @Dolphin for posting the review paper.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229648/

I haven’t had the energy to read it in depth and initially, a quick skim raised my hopes that it might be a reasonable qualitative summary but then the emphasis moved away from the “ lived experience” approach which is what I think is needed.

However I think this needs to be placed within a formal methodological strategy probably phenomenology by researchers familiar with its theoretical underpinnings and experienced in using that specific method. This would involve hearing the voices of patients and their families but in a more structured and analytical way.
That’s why I posted the link to the research on families of autistic children as an example.
https://www.researchgate.net/public...ience_of_Parents_Who_Have_a_Child_With_Autism
I think it’s about linking the experiences of families with the appropriate scientific method. @Willow. The whole section on method is particularly interesting including data collection. Am not sure that we have research as specific as this in ME but I may just have missed it.
 
Binkie4 said:
I think it’s about linking the experiences of families with the appropriate scientific method. @Willow.
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I think you meant me by that. :) Thanks for the tag. I will look at the paper sometime when I have a chance, hopefully.

I like what you said about joining experiences with appropriate scientific method.

(there are, of course, spaces in between before this has been done, and people improvise when there's no good data--I typically think it's better to improvise with a bigger and more diverse pool of influencers, than everyone improvising by themselves)
 
On the autism paper, I glanced briefly at the abstract (not well enough to do more atm), and saw it was collecting experiences only from parents. While I think it's fine and sometimes desireable to check with families, skipping asking the patients at all would not count as patient centered or patient voice, to me.
 
WillowJ said:
On the autism paper, I glanced briefly at the abstract (not well enough to do more atm), and saw it was collecting experiences only from parents. While I think it's fine and sometimes desireable to check with families, skipping asking the patients at all would not count as patient centered or patient voice, to me.
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I think this may have similar issues to the engagement issues with young people with ME.
Communication may be an issue, asymmetric power relationship, and their experience with authority . It's not impossible, but would have to be well thought out.
 
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