Pain is associated with reduced quality of life and functional status in patients with ME/CFS, 2018, Strand et al

Andy

Retired committee member
Abstract
Background and aims
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is challenging to live with, often accompanied by pervasive fatigue and pain, accompanied by decreased quality of life (QoL) as well as anxiety and/or depression. Associations between higher pain, lower QoL and higher anxiety and depression have been shown in patients with various chronic pain disorders. Few studies have however examined such associations in a sample of patients with ME/CFS. The aims of the current study were to examine the impact of pain levels and compare levels of pain, health related QoL, anxiety and depression between patients with ME/CFS and healthy controls. In addition, the study aimed and to examine these relationships within the patient group only.

Methods
This is a cross-sectional questionnaire based study comparing 87 well-diagnosed patients with ME/CFS with 94 healthy controls. The De Paul Symptom Questionnaire (DSQ), the Medical Outcomes Study Short-Form Surveys (SF-36) and the Hospital Anxiety and Depression Scale (HADS) were used to examine and compare pain, physical function, QoL, anxiety and depression in patients and healthy controls. Further the pain variables were divided into pain total, pain intensity and a pain frequency score for analyses of the above mentioned variables within the patient group only.

Results
Significantly higher levels of pain, anxiety and depression, and lower levels of QoL were found in the patient group compared with healthy controls. For the patient group alone, pain was significantly associated with lower QoL in terms of physical functioning, bodily pain, general health functioning, vitality and social functioning capacity. In this patient sample, only frequency of joint pain showed significant difference in psychological variables such as depression and anxiety – depression combined.

Conclusions
ME/CFS patients differ significantly from healthy controls in pain, health related QoL, anxiety and depression. Pain is significantly associated with reduced QoL and overall a lower level of functioning. The relation between pain and anxiety and depression appears less clear.

Implications
Pain is for many ME/CFS patients associated with reduced physical functioning and reduced QoL. A thorough pain assessment can therefore be essential for clinicians, and subsequent medical pain treatment combined with good pain coping skills may increase functioning level and QoL for these patients. The link between joint pain and psychological factors should also be focused in clinical practice in terms of mapping and counseling. Pain should be further examined to understand the importance it may have for functioning level as reduced function is a main criteria when diagnosing the patients.
Paywalled at https://www.degruyter.com/view/j/sjpain.ahead-of-print/sjpain-2018-0095/sjpain-2018-0095.xml
 
This on one level tells us nothing that does not seem obvious, high levels of pain are associated with lower quality of life and lower mood. But more importantly correlation does not necessarily mean causation, I have more pain when my ME is bad but also I have lots of other issues when my ME is bad, so it is not just pain that impacts on my mood or my quality of life. However I have been lucky that pain has not been a significant issue for me other than migraines until the last few years, and even now I do not have constant joint pain. The experience of people with more constant pain may be very different.

The authors seem to be suggesting (based only on the abstract) that effectively managing pain will improve other factors. This seems to leave lots of questions up in the air; pain management in ME is a complex and specialist issue; what is the balance between pain and other symptoms; is the impact of pain a linear one, for me mild and moderate pain are distressing but do not prevent me from doing things but pain can in a bad crash be so severe that I can only lie as still as possible for the hours or days it takes the pain to subside, so I would argue pain only begins to significantly effects quality of life at a certain cut off level; when pain is severe other symptoms are severe too, so that even if pain is controlled cognitive problems, orthostatic intolerance, digestive issues, etc might be still equally restrictive to quality of life or mood.

Further though pain may be related to anxiety and depression there are potentially other non ME specific factors also involved. For example does the individual have appropriate medical support, presumably pain will cause more anxiety when patients do not have trust that their doctors will diagnose it accurately and manage it appropriately. I may be anxious when there is new pain that could be something else, for example the onset of my costochondritis had symptom overlap with heart problems which obviously promoted anxiety because of the uncertainty which once I was reassured it was just yet another strange feature of ME though the pain increased my anxiety reduced.

Recently I had a period of shoulder pain that restricted arm movements. The pain itself did not present a serious problem, but the resultant restricted movement also restricted activities of daily living and threatened my independence in terms of personal care, which prompted anxiety about the future.
 
A Norwegian blogger has written a blog post about this study today pointing out that the authors lowered the scores in HADS from 9-10 to 8-9. The reasons from the authors was "HAD's tendency to underestimate depression" and "because of patient's reported tendency to underreport anxiety".

She then goes through and deconstructs their reasons for doing this.

ToTo NeuroImmunologisk Kurativ Behandling: Norsk ME-forskning: Elin Bolle Strand med tvilsom og kritikkverdig forskningspraksis
google translation: Norwegian ME research: Elin Bolle Strand with questionable and dubious research practice
 
A Norwegian blogger has written a blog post about this study today pointing out that the authors lowered the scores in HADS from 9-10 to 8-9. The reasons from the authors was "HAD's tendency to underestimate depression" and "because of patient's reported tendency to underreport anxiety".

She then goes through and deconstructs their reasons for doing this.

ToTo NeuroImmunologisk Kurativ Behandling: Norsk ME-forskning: Elin Bolle Strand med tvilsom og kritikkverdig forskningspraksis
google translation: Norwegian ME research: Elin Bolle Strand with questionable and dubious research practice

more like in terms of "Questionable Research Practices" and different type of bias.

Thank you for posting my blogpost @Kalliope :thumbup:

Best quote ever from the BPS squad; from Morriss and Wearden 1998:

"The second method was comparison with standardized criteria for a psychiatric diagnosis (DSM-III-R), excluding the sections on somatoform disorders (which would technically include all CFS patients by definition) and sleep disorders (which are common in CFS in the absence of psychiatric disorder)."

They finally did something right:bookworm::wtf::jawdrop:
 
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