"My Fibro Family!" A qualitative analysis of facebook fibromyalgia support groups' discussion content (2022) Crump and LaChapelle

ABSTRACT

Background
Fibromyalgia (FM) is a diagnostically controversial syndrome characterized by chronic widespread pain, fatigue, sleep difficulties, cognitive dysfunction, and mental health symptoms. Though online peer support groups (OPSGs) may help persons with FM access support and information, there are concerns that such groups can be harmful.

Aims and Methods
Using a nonparticipatory observational stance, the authors analyzed discussions in three Facebook FM OPSGs (approximately 15,000 members, mostly women) to determine what themes best characterize their discussion content and whether being in a particular group was related to the type of thematic content to which they were exposed.

Results
Two themes were identified that represented explicit reasons group members participated in the OPSG (trying to understand FM and seeking/offering emotional support). Six themes represented underlying reasons members sought informational and emotional support in FM OPSGs (fighting FM, learning to live with FM, struggling with identity, distressing thoughts and feelings, judgment, empowerment-seeking). No salient differences were identified between the thematic content of each group.

Conclusions
The findings suggest that FM OPSGs may provide much needed psychosocial and emotional support regarding important aspects of psychological adjustment to living with FM while also inadvertently encouraging approaches to living with FM that do not align with evidence-based FM management recommendations (e.g., investment in fighting rather than accepting FM). These findings may be useful to patients considering joining an FM OPSG and to health providers helping patients navigate to resources that can address their emotional or psychological support needs.


Link to paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9733682/

 

On the ethical approach to lurking in a forum with ethnographic intent: Groups whose netiquette statements stipulated the discussion content was private or copyrighted were also excluded from consideration.

Oddly, although this forum appears to have rules to cover every possible alligator-in-the-bath scenario, I can’t see any explicit statement to the above effect. Have I missed it, or was the idea considered and rejected when the tablets were first engraved?

 

Definitely, privacy is an ethical issue and patients need to be aware that there are lurkers in these groups.

So, the evidence is saying that it is best for patients to stop fighting and simply accept. I want to see that paper and see how strong the evidence is.
I would say that Facebook groups and certain forums are places where peers are quite happy to offer solicited and unsolicited advice, some can be cringeworthy, while other times, patients understand the despair and the difficulties in simply accessing health care, so the support from peer may be the only lifeline a patient may have.

 

We are talking ACT - lots of papers all (here's a surprise) showing ACT is wonderful. A selection in addition to the two quoted in the paper -

Acceptance and commitment therapy for fibromyalgia: a randomized controlled trial
RK Wicksell, M Kemani, K Jensen… - … journal of pain, 2013 - Wiley Online Library
… Recent meta-analyses point to the utility of cognitive behaviour therapy (CBT), but effects …
support for acceptance and commitment therapy (ACT) has increased rapidly. ACT focuses on

Effectiveness of group acceptance and commitment therapy for fibromyalgia: a 6-month randomized controlled trial (EFFIGACT study)
JV Luciano, JA Guallar, J Aguado, Y López-del-Hoyo… - PAIN®, 2014 - Elsevier
… fibromyalgia (FM) symptoms. The present study examined the effectiveness of acceptance
and commitment therapy (ACT) on functional status as well as the role of pain acceptance as …

Randomized controlled trial of online acceptance and commitment therapy for fibromyalgia
HD Simister, GA Tkachuk, BL Shay, N Vincent… - The Journal of …, 2018 - Elsevier
… (95% female) with fibromyalgia (FM) were randomly assigned to an online acceptance and
commitment therapy (online ACT) and treatment as usual (TAU; ACT + TAU) protocol or a …

Values-based action in fibromyalgia: Results from a randomized pilot of acceptance and commitment therapy
JL Steiner, L Bogusch, SM Bigatti - Health psychology research, 2013 - ncbi.nlm.nih.gov
… Fibromyalgia Syndrome (FMS) is a chronic pain condition characterized by pain, fatigue, …
of an 8-week Acceptance and Commitment Therapy (ACT) intervention compared to education

Brief acceptance and commitment therapy for fibromyalgia: Feasibility and effectiveness of a replicated single-case design
MC Gómez-Pérez, A García-Palacios… - Pain Research and …, 2020 - hindawi.com
Objective. Overall, the literature on the effectiveness of psychological treatments in general
and those for fibromyalgia in particular has been dominated by research designs that focus …

Cost-utility of group acceptance and commitment therapy for fibromyalgia versus recommended drugs: an economic analysis alongside a 6-month randomized …
JV Luciano, F D'Amico, A Feliu-Soler, LM McCracken… - The Journal of …, 2017 - Elsevier
… -based form of acceptance and commitment therapy (GACT) in patients with fibromyalgia (FM…
In conclusion, acceptance and commitment therapy appears to be a cost-effective treatment …

The impact of group therapy based on acceptance and commitment on psychological indicators (depression, anxiety, and stress) in women with fibromyalgia
صالحی, نشاط‌دوست, حمید طاهر, افشار - Journal of Research in …, 2018‎ - rbs.mui.ac.ir
… acceptance and commitment therapy on depression, anxiety, and stress in women with
fibromyalgia. … , in 2016, 24 patients with fibromyalgia syndrome were selected through convenient …

Mindfulness-and acceptance-based interventions for patients with fibromyalgia–A systematic review and meta-analyses
T Haugmark, KB Hagen, G Smedslund, HA Zangi - PloS one, 2019 - journals.plos.org
… We included randomized and quasi-randomized controlled trials analyzing health effects of
mindfulness- and acceptance-based interventions for patients with fibromyalgia compared to …

Acceptance and commitment therapy for fibromyalgia: A randomized controlled trial
GL Olsson, M Kemani, K Jensen, E Kosek… - … Journal of Pain, 2012 - degruyter.com
… therapy (CBT) have emphasized the utility of acceptance and … after CBT in females with
fibromyalgia (FM) has been … the effectiveness of Acceptance and Commitment Therapy (ACT)-…

 

Ho-hum on the utility of this research paper and any future meanderings on the topic.

The quality of information and therefore its usefulness is poor in the average support group. "This worked for me, you should try it."

I've had FM for 26 years. There was a great online support/information group maybe on WebMD (1998-2002?) moderated by Kim Jones RN NP PhD (she was in the FM research group with Dr. Robert Bennett of Univ of Oregon).


The woo-factor in the general population is reflected in support groups which is why I am on Science4me and not facebook. But when my pain levels, confusion, agitation and fatigue are high, I glance at Reddit and another fibro group.
It's important not to feel like an human outlier. People need validation and understanding and find it (only?) with those who have FM.

'Acceptance' is what---a realization that you have this condition for which there is no cure, you and only you can develop strategies to go on living with it. This takes time. Others with the illness or some rare clinician-researchers can sometimes point out things that may help you. Or you can be easily misled ('exercise more').

One tenet of ACT for chronic pain is: forget (as if you could) your pain and just carry on with doing what you would 'normally' do. That got me into trouble this week, as it almost always does.

Bottom line: there's a lot of wrong advice out there, but we're social animals and so are prone to accepting it.

 

I read the study. I am glad the researchers listed the salient comments by the FM participants. That is a valuable service! Thank you. Saved me some time. Do it again, please.

But here, the researchers show that they are not aware that IBS, for instance, is a known part of the FM symptom cluster and that pain can be very severe, anxiety is induced by high pain levels,(as is depression, also). Perhaps they are unaware of the shadings of FM, the categories of mild, moderate, and severe.

They write:

<<In addition, severe symptom presentations (e.g., daily intractable pain, severe mobility limitations) were often characterized as typical of FM, and additional symptoms that may be better explained as medication side effects, concurrent health problems, or non-FM normative experiences were also presented as FM symptoms (e.g., irritable bowel, rashes, anxiety, hormone imbalances, dry mouth).” >>

Bolding mine.

 

Here is what acceptance and commitment therapy should be: The clinicians and researchers should all accept that fibromyalgia has been horribly neglected and that evidence for any pathophysiological process and for treatments is poor to very poor. The commitment should be no less than a moonshot approach which includes the most promising basic science researchers to elucidate the mechanism of illness and possible treatments.

 

Encouraging people to accept their illness is hollow unless society has already done everything possible to prevent, treat, or cure it. It may be reasonable to accept that nothing can be done if you have a disease on which billions has been spent. But that's not true of many disorders, ME and FM included. We need moonshot projects for both.