Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and cfs, McManimen et al, 2018

Indigophoton · May 10, 2018

From Leonard Jason's group,

Abstract
Prior research has found a heightened risk of suicide in patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). It is possible that a number of factors including stigma, unsupportive social interactions, and severe symptoms could lead to the development of depression, suicidal ideation, and heightened risk of suicide in this patient population.

Prior studies have indicated that patients often report the legitimacy of their illness being questioned by family, friends, and even their physicians. This study aimed to determine whether stigma experienced, social support, symptomology, and functioning may be associated with depression and endorsement of suicidal ideation (SI) in patients with a self‐reported diagnosis of ME or CFS.

Findings indicated that participants that endorsed both SI and depression, in contrast to those that did not, experienced more frequent unsupportive social interactions in the form of blame for their illness, minimization of its severity, and social distancing from others. In addition, 7.1% of patients with ME and CFS endorsed SI but do not meet the criteria for clinical depression

These findings highlight the importance of stigma and unsupportive social interactions as risk factors for suicidal thoughts or actions among patients with ME and CFS.

Community psychologists have an important role to play in helping educate health care professionals and the public to these types of risk factors for patients marginalized by ME and CFS.
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https://onlinelibrary.wiley.com/doi/abs/10.1002/jcop.21984

Full paper available at http://sci-hub.tw/10.1002/jcop.21984

James Morris-Lent · May 10, 2018

In addition, 7.1% of patients with ME and CFS endorsed SI but do not meet the criteria for clinical depression
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This stands out to me.

strategist · May 11, 2018

The stigma and disbelief is in part fueled by the all in the mind narrative promoted by Wessely et al. They would disagree they are sending out this message but it's hard to interpret their statement about illness beliefs perpetuating the illness any differently.

Some relevant statements by Sharpe in the press:

Many patients with chronic fatigue syndrome are being held back by a ‘self-fulfilling prophecy’, according to a leading researcher.

Oxford psychiatrist Professor Michael Sharpe said that some people with the condition do not push themselves to recover.

Professor Sharpe insisted that he views the condition to be ‘a real illness’ with serious consequences.

But he said patients become terrified of exercise and physical activity for fear that it will make their illness worse.

These fears can be overcome by cognitive behavioural therapy or a gradual increase in exercise, he said.

‘They get locked into a pattern where they do less, they get more concerned about doing more,’ he said. ‘If you live within your limits that becomes a self-fulfilling prophesy.’
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http://www.dailymail.co.uk/health/a...fessor-claims-sufferers-not-push-recover.html

Cheshire · May 11, 2018

I haven't read it all yet, but very interesting so far.
THAT is the kind of psychosocial research we need!

strategist · May 11, 2018

Cheshire said: ↑

I haven't read it all yet, but very interesting so far.
THAT is the kind of psychosocial research we need!
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It's an interesting paper

Dolphin · Aug 2, 2018

Some extracts from the introduction:

Lack of a clear-cut biological cause has increased skepticism about this illness, and patients report the legitimacy of their illness is frequently questioned by family, friends, and even their physicians (Asbring & Narvanen, 2002; Denz-Penhey & Murdoch, 1993;Ware, 1992).:
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Contextual factors may be associated with an increased risk of SI [suicidal ideation] or depression in patients with ME and CFS. These possible factors are as follows: a greatly diminished quality of life (Hvidberg, Brinth, Olesen, Petersen, & Ehlers, 2015; Komaroff et al., 1996); stigma surrounding the illness, including beliefs held by patients’ families, friends, and even physicians that the illness is not real or is just depression (Dickson, Knussen, & Flowers, 2007; Jason & Richman, 2007; Jason, Taylor, Stepanek, & Plioplys, 2001; Looper & Kirmayer, 2004); as well as social and familial isolation or perceived lack of support (McInnis, Matheson, & Anisman, 2014; Schweitzer, Kelly, Foran, Terry, & Whiting, 1995;Ware, 1999).
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Patients with ME and CFS may be more vulnerable to developing depression due to a lack of support from their physicians.
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Identity challenges in chronic illnesses are known to result in a variety of negative consequences for the patient including deciding between maintaining their pre-illness identity at the risk of their health and adapting their identity to the illness in terms of the ability to work or maintain relationships. (Asbring, 2001; Charmaz, 1994).
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Dolphin · Aug 2, 2018

Jiménez-Ortiz (2015) attempted to elucidate the circumstances influencing the increased risk of suicide and depression in 205 people in Spain who were affected by ME and CFS. This is the first study to assess external factors that may increase the risk of suicide or the development of depression in patients with ME or CFS. Correlational findings suggested several factors contributed to an increased risk of suicide: a lack of medical care, invalidating interactions with physicians, inability to earn a living outside of the home, and codependence on family members. There were also several factors found to contribute toward a risk of depression in patients: job loss, loss of friendships, and improper treatment by medical professionals, including referrals to psychological or psychiatric treatment. These findings, however, may not be generalizable to patients outside of Spain. Thus, it is important to examine risk factors in this population in other geographic locations, such as the United States.
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Jiménez-Ortiz, J. J. (2015). Depresión y desesperanza en personas enfermas de Encefalomielitis Miálgica/Síndrome de Fatiga Crónica: Factores de riesgo y de protección [Depression and despair in people sick with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Risk and protection factors]. Retrieved from https://uvadoc.uva.es/handle/10324/13868
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Dolphin · Aug 2, 2018

In the general population, difficulty with sleep is a known predictor of future depression (Goldstein &Walker, 2014) and a systemic review by Bernert, Kim, Iwata, and Perlis (2015) found sleep disturbances were significantly associated with suicidal behaviors (e.g., ideation or attempts) after controlling for depression. Bernert, Turvey, Conwell, and Joiner (2014) found unrefreshing sleep and difficulty falling asleep to be significantly associated with an elevated risk for suicide 10 years later.
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Pain is another prominent symptom of ME and CFS, which may contribute to the development of depression or SI. In general, chronic pain has been shown to double an individual's risk for suicide compared to people not experiencing chronic pain (Tang & Crane, 2006).
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Dolphin · Aug 2, 2018

Given the above, it's not really surprising many with ME or CFS suffer from depressive symptoms or suicidal ideation.

Dolphin · Aug 2, 2018

1.2 Unsupportive Social Interactions

The Unsupportive Social Interactions Inventory (USII; Ingram, Betz, Mindes, Schmitt, & Smith, 2001) was used to assess the frequency of unsupportive social interactions experienced by patients. The instrument was created to assess stressor-specific unsupportive social interactions in response to an individual experiencing a stressful life event, such as a chronic illness. Participants rated “How much of this I received” for each item describing an unsupportive interaction on a scale of 0 to 4 (0 = none to 4 = a lot). The measure results in four subscales: Distancing (emotional and behavioral disengagement), Bumbling (awkward behaviors), Minimizing (minimizing the individual 's concerns or encouraging optimism), and Blaming (criticizing or faulting the individual for the event). These four subscales were found to assess stressor-specific social interactions separate from general, negative social interactions.

The Distancing, Minimizing, and Blaming subscales were of interest for the current study. Distancing included six items relating to social disengagement (e.g., “Did not seem to want to hear about it”). Minimizing included six items relating to having their comments minimized by others (e.g., “Felt that it could have been worse or was not as bad as I thought”). Blaming included three items relating to the participant being blamed for their illness (e.g., “Blamed me, tried to makemefeel responsible for the illness”). These subscales have shown adequate internal consistency reliability (Ingramet al., 2001).
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https://etd.ohiolink.edu/!etd.send_file?accession=osu1147705028

Unsupportive Social Interactions Inventory

Instructions: The following is a list of possible responses the person with you before your speech may have used when talking with you. Please rate each item by indicating how much of the response you received, on
a scale from 0 (none) to 4 (a lot).

1. "I told you so" or similar comment.
2. "Should or shouldn't have" comments about my role in the speech.
3. Asked "why" questions about my role in the speech.
4. Blaming me, trying to make me feel responsible for the speech.
5. Changed the subject before I wanted to.
6. Did not seem to know what to say, or seemed afraid of saying or doing the "wrong" thing.
7. Did not seem to want to hear about it.
8. Did things for me that I wanted to do and could have done myself.
9. Discouraged me from expressing feelings such as anger, hurt, or sadness.
10. Felt that I should focus on the present or the future and that I should forget about what has happened and get on with my life.
11. Felt that I should stop worrying about the event and just forget about it.
12. Felt that I was overreacting.
13. Felt that it could have been worse or was not as bad as I thought.
14. From voice tone, expression, or body language, I got the feeling he or she was uncomfortable talking about it.
15. Refused to provide the type of support I was asking for.
16. Refused to take me seriously.
17. Responded with uninvited physical touching (e.g., hugging).
18. Said I should look on the bright side.
19. Seemed disappointed in me
20. Seemed to be telling me what he or she thought I wanted to hear.
21. Told me that I had gotten myself in the situation in the first place, and now must deal with the consequences.
22. Told me to be strong, to keep my chin up, or that it should not let it bother me.
23. Tried to cheer me up when I was not ready to.
24. When I was talking about it, person didn't give me enough time, or made me feel like I should hurry.

Dolphin · Aug 2, 2018

1.3 Stigma Scale

The Facial Pain Stigma Questionnaire was used to assess stigma present in interactions with others because of its evidenced good reliability (Lennon, Link,Marbach, & Dohrenwend, 1989). This questionnaire was developed for another highly stigmatized illness characterized by pain, and as such, the wording of the questions were adapted for patients with ME and CFS. For example, “Most people have no idea what it's like to have facial pain” was adapted to read “Most people have no idea what it's like to have ME or CFS.” Participants endorsed items on a 4-point Likert scale ranging from 1 (strongly disagree) to 4 (strongly agree).

Two domains, Attributions to a Personality Problem and Estrangement, were used in the present study. Attributions to a Personality Problem comprised five items relating to perceived psychological etiologies (e.g., “People have a way of associating the occurrence of ME or CFS with psychiatric difficulties”). Estrangement comprised six items relating to feeling estranged from others due to the illness (e.g., “Most people have no idea what it is like to have ME or CFS”). The original Facial Pain Stigma Scale demonstrated good internal consistency (disclosure = .72; attribution to personality/ psychological problems = .82; estrangement = .84).
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https://slideheaven.com/losing-face...erceived-by-chronic-facial-pain-patients.html

Dolphin · Aug 2, 2018

Regarding comorbid conditions, nine participants had co-occurring mental health diagnoses. For the group that met neither criteria, one participant reported posttraumatic stress disorder and two reported anxiety. For the group meeting depression criteria, one participant reported comorbid anxiety. For the group meeting both criteria, two reported anxiety, two reported bipolar disorder, and one reported anxiety. No participants in the group endorsing SI but not meeting the BDI-PC cutoff reported any comorbid mental health diagnoses. The removal of these nine participants did not significantly affect the results.
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Dolphin · Aug 2, 2018

I'm guessing 89.5% figure is from a 2002 paper, but I don't think of this one.

The findings were comparable to a previous study (Jason et al., 2002): 89.5% of participants reported dismissive attitudes from a physician after developing ME or CFS.

Jason, L. A., Taylor, R. R., Plioplys, S., Stepanek, Z., & Shlaes, J. (2002). Evaluating attributions for an illness based upon the name: Chronic fatigue syndrome,myalgic encephalopathy and FlorenceNightingale disease. American Journal of Community Psychology, 30(1), 133–148
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Dolphin · Aug 2, 2018

A noteworthy finding of this study indicates that 7.1% of patients with ME and CFS are endorsing SI but do not meet the criteria for clinical depression. Thus, this group's desire to die cannot be attributed to untreated depression as suggested by Kapur and Webb (2016). This finding is similar to that of Breitbart et al. (2000), which found that within a palliative care setting, 10% of patients with terminal cancer had a desire to die yet did not meet criteria for depression. Similarly, Recklitis, Zhou, Zwemer, Hu, and Kantoff (2014) investigated SI in survivors of prostate cancer and found SI to be associated with poor physical functioning, symptom burden, and high frequency of pain, even after controlling for depression.
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Dolphin · Aug 2, 2018

Thus, it is important to screen for possible suicidal ideation, regardless of the presence of depression, when a patient is diagnosed with a severely debilitating physical illness such as ME or CFS.
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They don't mention that there are issues with screening programmes for suicidal ideation or anything else. Too many people can get treated. So these issues would need to be investigated.

Moreover, it is also important to recognize that social and community factors, such as unsupportive interactions and stigma, increase the risk of SI among these patients.
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Wonko · Aug 2, 2018

Maybe, just maybe, if they started with not assuming we are lazy, mad scroungers instead of giving us meaningless surveys it would help?

Dolphin · Aug 2, 2018

3.1 Limitations
This study has several limitations. First, the study may have been affected by selection bias. The title of the survey was “Demoralization and Depression-Like Symptoms in Individuals with ME and CFS”; therefore, it is possible that those who did not feel demoralized or depressed were less likely to participate in the study, which would skew the prevalence of SI and depression in this population.
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Dolphin · Aug 2, 2018

Just to be rigourous:
There is a possibility that the experiences were no different between the groups, and that the people who were depressed and/or have suicidal ideation had a more negative impression or interpretation than the others (i.e. reversing the direction of causation from one proposed). This might even still be interesting.

Also even the measures of functioning and symptoms are self-reported, so theoretically people with suicidal ideation or depression might report higher levels of symptoms and lower levels of functioning than another group who objectively were similar e.g. if asked what they were able to do or not do.

Tom Kindlon · Aug 2, 2018

https://twitter.com/user/status/1025077126884745216

Tom Kindlon · Aug 2, 2018

https://twitter.com/user/status/1025079636789813248

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