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Perceived stress, illness invalidation, and symptom severity in ME/CFS

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Perceived stress, illness invalidation, and symptom severity in myalgic encephalomyelitis/chronic fatigue syndrome
Elizabeth A. Kendrick
& Denise Beesley

ABSTRACT
Background: Qualitative studies indicate that individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) commonly experience illness invalidation from medical professionals that is often experienced as stressful and may contribute to strained patient–provider relationships, transfers of care, and/or decreased treatment adherence.
Purpose: To examine the impact of perceived stress and illness invalidation from medical professionals on ME/CFS symptom severity.
Methods: Adults with ME/CFS (N = 266) participated in an online survey, where they completed the Illness Invalidation Inventory (I*3) [Kool MB, van Middendorp H, Lumley MA, et al. Lack of understanding in fibromyalgia and rheumatoid arthritis: the Illness Invalidation Inventory (3*I). Ann Rheum Dis. 2010;69:1990–1995.], the Perceived Stress Scale (PSS) [Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav. 1983;24:385–396.], and the CDC Symptom Inventory for Assessment of CFS. Results were evaluated via hierarchical regression.
Results: Neither perceived stress nor illness invalidation from medical professionals were significant predictors of ME/CFS symptom severity. Illness invalidation from medical professionals was positively correlated with illness invalidation from family, work colleagues, and social service workers.
Conclusions: Results called into question the influence of psychological stress in ME/CFS symptom exacerbation, thus contributing additional information to the body of literature exploring the underlying mechanisms of ME/CFS. Additionally, this study suggested the particular importance of medical providers striving to create a validating relationship with patients who have ME/CFS.
http://dx.doi.org/10.1080/21641846.2016.1250862
http://www.tandfonline.com/doi/abs/10.1080/21641846.2016.1250862?journalCode=rftg20
 
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'Illness invalidation from medical professionals'
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... Not just illness invalidation, but broken bone injury invalidation ......

I can hardly bear to speak about being refused examination and treatment of a broken and displaced rib in a UK hospital A&E (2003) ..... because the nurse was insane and the doctor was in a deluded world of his own .... both of them were just fucking crazy .... besotted with beliefs about 'ME is psycho-bloody-somatic' and .... 'catstrophising normal body sensations' ....

The broken rib was sticking right out of my chest .... raw and clearly visible, no one could miss it .... except that crazy nurse and deluded doctor persistently refused to even LOOK at it .... despite being repeatedly asked to by me and my incredulous carer over and over for 20 fucking minutes !!!!

The reason they were fucking crazy/deluded/abusive/cruel/unprofessional/unethical and bloody dangerous ....

Because they had been Brainwashed into believing that severely sick people with ME are not really sick and not even really fucking injured even when they have a visibly broken bone!!

In a country (the UK) in which healthcare is supposed to be free at the point of service .... someone who is so sick they were nearly falling off the chair, supported by an incredulous and protesting carer .... treated like a deluded hysteric instead of being examined, X-rayed and treated for a broken bone ..... I was abused by two doctors and a nurse on that day .... what the NHS maniacs did NOT do was examine and treat the broken bone

I am sure you can tell that I am still traumatised from that horrific experience ... as well as having an untreated broken bone .....

Our wonderful NHS .... Ha! ... I avoid GPs, Hospitals ... everything ... as the only way to avoid being abused by the bastards.

I don't want to discuss it further
.
 
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Dolphin

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Note that the scoring for questions 3, 5 and 8 are reversed

https://shareok.org/bitstream/handle/11244/17219/2015_Kendrick_Elizabeth_Dissertation.pdf?sequence=5
Appendix A

Illness Invalidation Inventory (3*I)

© 2008, Kool, van Middendorp & Geenen

We are interested in how others react to people who have health problems or an illness. Each of the sections below refers to different people in your life. We would like you to rate how often during the past year each person or category of people reacted toward you in the way described. After each statement, circle the number between 1 (never) and 5 (very often) to indicate how often they reacted toward you that way.

The questionnaire has five sections, and you will rate the same reactions a number of times, but referring to different people. If a particular section does not apply to you, you may skip that part of the questionnaire and go on to the next section. Remember, rate the items with respect to how others reacted toward you as a person who has health problems or an illness.

Section 1: Spouse or partner

If you are single (not married, a widow/widower, or without a steady partner) then skip Section 1 and go directly to Section 2.

My spouse or partner…………… Never Seldom Sometimes Often Very often

1.1 ….finds it odd that I can do much more on some days than on other days. 1 2 3 4 5

1.2 ….thinks I should be tougher. 1 2 3 4 5

1.3 ….takes me seriously. 1 2 3 4 5

1.4 ….gives me unhelpful advice. 1 2 3 4 5

1.5 ….understands the consequences of my health problems or illness. 1 2 3 4 5

1.6 ….makes me feel like I am an exaggerator. 1 2 3 4 5

1.7 ….thinks I can work more than I do. 1 2 3 4 5

1.8 ….gives me the chance to talk about what is on my mind. 1 2 3 4 5

---

Section 2: Family
For example, children, parents, brothers, sisters, uncles, aunts, grandparents, in-laws.

My family……… Never Seldom Sometimes Often Very often

2.1 ….finds it odd that I can do much more on some days than on other days. 1 2 3 4 5

2.2 ….thinks I should be tougher. 1 2 3 4 5

2.3 ….takes me seriously. 1 2 3 4 5

2.4 ….gives me unhelpful advice. 1 2 3 4 5

2.5 ….understands the consequences of my health problems or illness. 1 2 3 4 5

2.6 ….makes me feel like I am an exaggerator. 1 2 3 4 5

2.7 ….thinks I can work more than I do. 1 2 3 4 5

2.8 ….gives me the chance to talk about what is on my mind. 1 2 3 4 5

---

Section 3: Medical professionals
For example, your primary care physician, medical specialist, physical therapist, and other medical professionals. (Do not include your employer’s company physician).

Medical professionals ..... Never Seldom Sometimes Often Very often

3.1 ….find it odd that I can do much more on some days than on other days. 1 2 3 4 5

3.2 ….think I should be tougher. 1 2 3 4 5

3.3 ….take me seriously. 1 2 3 4 5

3.4 ….give me unhelpful advice. 1 2 3 4 5

3.5 ….understand the consequences of my health problems or illness. 1 2 3 4 5

3.6 ….make me feel like I am an exaggerator. 1 2 3 4 5

3.7 ….think I can work more than I do. 1 2 3 4 5

3.8 ….give me the chance to talk about what is on my mind. 1 2 3 4 5

---

Section 4: Work environment
For example, your co-workers and boss. (Do not include your employer’s company physician).

If you did not have paid or unpaid employment in the past year, then skip this Section and go directly to Section 5.

People at work……. Never Seldom Sometimes Often Very often

4.1 ….find it odd that I can do much more on some days than on other days. 1 2 3 4 5

4.2 ….think I should be tougher. 1 2 3 4 5

4.3 ….take me seriously. 1 2 3 4 5

4.4 ….give me unhelpful advice. 1 2 3 4 5

4.5 ….understand the consequences of my health problems or illness. 1 2 3 4 5

4.6 ….makes me feel like I am an exaggerator. 1 2 3 4 5

4.7 ….think I can work more than I do. 1 2 3 4 5

4.8 ….give me the chance to talk about what is on my mind. 1 2 3 4 5

---

Section 5 : Social services
For example, your employer’s company physician, work-reintegration or vocational rehabilitation staff, unemployment and other government agencies, organizations for care at home, general government workers and health insurance companies

If you did not have any interactions with these providers, you may skip this Section.

People in social services……. Never Seldom Sometimes Often Very often

5.1 ….find it odd that I can do much more on some days than on other days. 1 2 3 4 5

5.2 ….think I should be tougher. 1 2 3 4 5

5.3 ….take me seriously. 1 2 3 4 5

5.4 ….give me unhelpful advice. 1 2 3 4 5

5.5 ….understand the consequences of my health problems or illness. 1 2 3 4 5

5.6 ….make me feel like I am an exaggerator. 1 2 3 4 5

5.7 ….think I can work more than I do. 1 2 3 4 5

5.8 ….give me the chance to talk about what is on my mind. 1 2 3 4 5
 
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Dolphin

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http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.972.8628&rep=rep1&type=pdf
Spouse/Family/Medical professionals/Work/Social Services

‘Discounting’ items

1 ...finds it odd that I can do much more on some days than on other days
2 ...thinks I should be tougher
4 ...gives me unhelpful advice
6 ...makes me feel like I am an exaggerator
7 ...thinks I can work more than I do
‘Lack of understanding’ items

3 ...takes me seriously (R)
5 ...understands the consequences of my health problems or illness (R)
8 ...gives me the chance to talk about what is on my mind (R)

R, reversed scores
Scores from Kendrick's thesis:
https://shareok.org/bitstream/handle/11244/17219/2015_Kendrick_Elizabeth_Dissertation.pdf?sequence=5

1. I*3 LOU
Mean: 3.19

I*3 LOU = Illness Invalidation Inventory, Lack of Understanding Subscale – higher scores suggest higher levels of perceived illness invalidation in the form of lack of understanding

I*3 Discounting
Mean: 2.94

I*3 Discounting = Illness Invalidation Inventory, Discounting Subscale – higher scores suggest higher levels of perceived illness invalidation in the form of discounting.
It would be interesting to have scores for other conditions.

Using a weighted average, this gives a total I*3 score for ME/CFS of 3.03375 a question or 24.27 per set of 8 questions.
 
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Dolphin

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Perceived Stress Scale (PSS) was correlated with:
I*3 Partner
I*3 Family
I*3 Work

People probably have more contact with these individuals than medical professionals meaning any illness invalidation could have a bigger effect on someone's stress.

Speculation: There might perhaps be some variation among the individuals and countries about the effect of illness invalidation from professionals. For example in some countries especially if you have money, you can shop around more for health and medical professionals so if a particular one is not supportive, it can be easier to move on to somebody else than for some other people.
 

Dolphin

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Illness invalidation has been conceptualized as the experience of having one’s illness experience doubted, misunderstood, viewed as suspect, and rejected by others as likely being psychologically motivated [15–19]. Illness invalidation may be particularly likely to occur when symptoms are ambiguous, not visibly-apparent, and chronic [15,18,20,21].
 

Dolphin

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Further, a systematic review of 32 quantitative and qualitative studies, involving more than 2500 individuals with ME/CFS, indicated that experiences of cynicism and lack of empathy from medical professionals were commonly experienced [23]. Invalidation of ME/CFS symptoms was particularly pronounced for individuals from minority groups, those who were disadvantaged, or those with severe illness.
 

Dolphin

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Qualitative research revealed that individuals with ME/CFS felt considerable internal pressure to demonstrate that they were ‘good patients,’ in order convince their physicians that they were truly experienced a debilitating physical condition [39]. Additionally, patients with ME/CFS have reported feeling confused, disempowered, and vulnerable, as well as experiencing self-doubt and loss of identity, upon perceiving illness invalidation from medical professionals [27].
 

Dolphin

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An additional stressor for individuals with ME/CFS is that illness invalidation from medical professionals appears to contribute to lack of validation from family and employers [39]. Since medical professionals are culturally sanctioned as having power to officially recognize an individual’s symptoms as medically and socially legitimate [27,40–42], lack of validation from medical professionals may undermine the social support that would typically accompany the sick role [16].
 

Dolphin

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Medical professionals are culturally sanctioned to recognize an individual’s symptoms as medically and socially legitimate [39,40,42], and thus, play a particularly important role for patients with ME/CFS, as they attempt to navigate the psychosocial impact of the illness. Therefore, medical providers should be encouraged to create a supportive, validating environment for patients with ME/CFS, particularly since validation from providers has been found to contribute to increased confidence in coping with invalidation fromthe broader community [20].
 

Dolphin

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It is easy to imagine that some lay and medical media coverage of ME/CFS has caused illness invalidation either from medical professionals, social services, work colleagues and/or from people's partners and families. This is one reason people with ME/CFS would be very conscious of how the illness is portrayed in the media.

Indeed the CBT/GET model by itself probably causes illness invalidation.
 

Dolphin

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There was no major psychobabble in this paper that I can recall. There was no mention of CBT or graded activity/exercise.
 

duncan

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All in all, this abstract is a good read, and fairly sympathetic.

But the stated concern over "...decrease treatment adherence..." is a bit disconcerting. In the greater context of ME/CFS, this is meaningless - kind of like berating sufferers of any virus for not taking antibiotics.

As has been discussed in more than one thread on PR, it is common for pwME to know more than their clinician. As for so called "treatments"...
 

TiredSam

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There was no major psychobabble in this paper that I can recall.
Attaching numerical evaluations to replies on a survey and then claiming the results mean anything (or are even "science") is enough for it to be psychobabble for me.
Results: Neither perceived stress nor illness invalidation from medical professionals were significant predictors of ME/CFS symptom severity. Illness invalidation from medical professionals was positively correlated with illness invalidation from family, work colleagues, and social service workers.
Conclusions: Results called into question the influence of psychological stress in ME/CFS symptom exacerbation, thus contributing additional information to the body of literature exploring the underlying mechanisms of ME/CFS. Additionally, this study suggested the particular importance of medical providers striving to create a validating relationship with patients who have ME/CFS.
I find this creepy. It could be interpreted as saying "even if sufferers think they are being treated badly by their doctor, and even if it's true, we have demonstrated that this doesn't exacerbate their symptoms so even if their doctor is an arrogant prat it isn't doing any harm and they can stop moaning and blaming the doctor for anything."
 

RogerBlack

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Attaching numerical evaluations to replies on a survey and then claiming the results mean anything (or are even "science") is enough for it to be psychobabble for me.


I find this creepy. It could be interpreted as saying "even if sufferers think they are being treated badly by their doctor, and even if it's true, we have demonstrated that this doesn't exacerbate their symptoms so even if their doctor is an arrogant prat it isn't doing any harm and they can stop moaning and blaming the doctor for anything."
You can also read it as a dismissal of claims that 'sickness role' is important.
Any doctor with concerns that they are validating the persons illness and encouraging them to remain sick is doing it without evidence.
 

Dolphin

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Conclusions: Results called into question the influence of psychological stress in ME/CFS symptom exacerbation, thus contributing additional information to the body of literature exploring the underlying mechanisms of ME/CFS.
I don't think this has been proven. There could be a long gap between any psychological stress suffered following invalidating contact with a medical and when their stress levels were assessed.