Lived Experiences of Cognitive Dysfunction in Fibromyalgia: How Patients Discuss Their Experiences and Suggestions for Patient Education 2024 Millar+

Andy

Andy

Retired committee member
Abstract

Cognitive dysfunction (CD) is a common, impairing symptom experienced by persons with fibromyalgia (FM). This study explored how individuals with FM describe their experience of CD in an online peer support environment. Posts referencing cognitive symptoms were extracted from two Facebook FM peer support groups at two timepoints. Using inductive Thematic Analysis, key discussion themes were identified and compared across groups and time.

Four themes represented the way members described their cognitive experiences in FM: understanding and describing CD experiences, distrust of cognitive abilities, choosing between pain and medication side effects, and misunderstanding and judgement from others. Two themes represented the impact of CD on members’ lives: impaired social interaction and loss of identity. Group members described broad impairments in daily functioning that significantly and negatively impacted their quality of life, indicating CD symptoms may play a more prominent role in the FM experience than previously understood. An infographic is included to aid patient education and help facilitate patient-provider discussions of CD symptoms.

Open access, https://journals.sagepub.com/doi/10.1177/23743735241229385
 
"Data Collection

The data used in this study was comprised of relevant excerpts of data from a larger dataset26 (see Crump & LaChapelle, 2022 for full methodological details about data collection) as well as novel data collected using identical methodology two years after the first data collection period. Two time points were included to increase the trustworthiness of identified themes and to determine whether discussion themes changed over time as the membership of the group evolved. Further, given the recent proliferation of research concerning FM-related CD, we were interested in whether knowledge translation efforts have led to changing views among those living with FM. Data collection was undertaken following approval by the authors’ institutional Research Ethics Board.

Given the observational approach used prevented the researchers from obtaining informed consent, careful consideration was given to ethical issues including consent and potential risk to participants to ensure compliance with article 10.3 of the Canadian Tri-Council policy statement on ethical conduct for research involving humans.27 In accordance with Eysenbach and Till's25 guidelines for discerning public versus private groups, each OPSG observed was publicly searchable, had at least 500 members, did not have posted rules to keep discussion content private, and could be accessed by simply clicking “join”. Detailed explication of how this research complied with the five conditions necessary to waive the requirement of informed consent by the Canadian Tri-Council policy is provided in Crump & LaChapelle.26

The Tri-Council policy also requires research exempt from the requirement of consent to demonstrate potential benefit to participants, the population studied, or society in general.27 The authors hope the current study may contribute to a better understanding of the lived experience of CD symptoms in the context of FM both for individuals with FM and health providers."
 
At a quick skim, it seems sympathetic and generally useful in highlighting the effect of cognitive dysfunction on pwFM's lives and access to appropriate medical care and support. I note the authors are pwFM.

There are few bits I query:

The experience of CD symptoms and difficulties with communication appeared to contribute to members’ distrust of their cognitive abilities and increased reliance on OPSGs for social interaction. By communicating asynchronously, members avoid the demand that in-person socializing places on cognitive resources; they can take time to formulate responses and choose not to respond when experiencing heightened CD symptoms. While the reduction in cognitive demand may be desirable, individuals may inadvertently increase the severity of their CD via deconditioning of the cognitive skills necessary for in-person social interaction.22 Furthermore, while OPSGs may be beneficial for providing support and reducing loneliness, they are not a permanent solution nor an equal alternative to in-person social contact.24,32
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My bolding. Is there such a thing as deconditioning cognitive skills due to lack of social interaction?
___________________

On their poster they list as causes of cognitive dysfunction:

pain
sleep disturbance
psychological disorders
medication side effects.

Other parts of the poster suggest that this list affects the severity of cognitive dysfunction, but they don't seem to see the difference between cause and factors influencing severity.

I don't know whether there is an underlying biological cause of cognitive dysfunction in FM. For those with cognitive dysfunction in ME/CFS, I think there is an underlying biological problem. I think there's a big difference between underlying cause and aggravating factors.
 
When I became chronically ill in 2008, I continued social interactions -- maintain contacts, attending parties, inviting people over -- for about 6 months. Then I decided that it wasn't my job to socialize when I'm sick. When I recently got back on FB, nobody but a few seem to recognize me, lol. I have no regrets though. Fair-weather interactions don't mean much when you are sick and there are plenty anecdotes of conditions getting worse as the patients tried to maintain normalcy. I understand that people have needs for social contacts and support, but sometimes it's just easier to be sick alone and focus your energy on recovering, especially in a disease that people don't quite understand. If there is such a thing as a deconditioning of cognitive skills from the lack of social interactions, the stress of trying to maintain it could more than negate the benefit.
 
I find this sort of 'research' pretty distasteful. It is basically snooping and snooping with the assumption that at the end of it you know how to 'help' people using an infographic or something.

It may seem sympathetic but then that is part of the self-justification for these people. Do-gooding busy-bodying I fear.

And what exactly is cognitive dysfunction? Goodness only knows.

The 'thematic' methodology also sounds bogus to me - basically it allows researchers to pick the bits they fancy and re-word them as even more as they fancy.

A meme factory really.
 
Cognitive deconditioning

I don’t have Fibromyalgia but presumably this lot would/will make similar claims for ME

I don’t have any cognitive difficulties resulting from engaging less with people than before I was ill.

Word finding, losing threads are the type of cognitive difficulties I have and these are made worse by more contact as I tend to chat for longer than I have energy for, not because I am somehow out of practice

also although it is not speaking engaging online through forums and particularly text apps like WhatsApp is a form of conversation
 
Jonathan Edwards said:
I find this sort of 'research' pretty distasteful. It is basically snooping and snooping with the assumption that at the end of it you know how to 'help' people using an infographic or something.
Click to expand...

I agree.

I hope the authors at least alerted the members of the FB groups whose data was used that they were doing so, and asked permission from any individuals whose words they quoted.

In case any non members are reading this thread, you might like to know that this forum now has a policy that we will not give permission for the forum to be used as source material for any research.
 
Trish said:
At a quick skim, it seems sympathetic and generally useful in highlighting the effect of cognitive dysfunction on pwFM's lives and access to appropriate medical care and support. I note the authors are pwFM.

There are few bits I query:


My bolding. Is there such a thing as deconditioning cognitive skills due to lack of social interaction?
___________________

On their poster they list as causes of cognitive dysfunction:

pain
sleep disturbance
psychological disorders
medication side effects.

Other parts of the poster suggest that this list affects the severity of cognitive dysfunction, but they don't seem to see the difference between cause and factors influencing severity.

I don't know whether there is an underlying biological cause of cognitive dysfunction in FM. For those with cognitive dysfunction in ME/CFS, I think there is an underlying biological problem. I think there's a big difference between underlying cause and aggravating factors.
Click to expand...


I thought it was worth looking up the real definition of the term deconditioning for the purpose of this:

Oxford Languages: "the reversal of previous conditioning of a behaviour, especially as a treatment for phobic and other anxiety disorders.
  1. "anxiety reactions triggered by specific stimuli may be subject to deconditioning""
Cambridge Dictionary:
"
the process of losing physical strength through being ill, injured, or not active:
Exercise is very important during recovery, for maintaining muscle strength and avoiding deconditioning.
If a back brace is used for too long, it can lead to deconditioning of the muscles that support the back."

Not sure this bloke knows what he is saying. Literally. ?
 
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