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

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

 

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

Thank you for posting my blogpost @Kalliope

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