rogerblack
Established Member (Voting Rights)
I have not seen (through a brief search) any mention of an effort to bring together what we've learned over the decades about how to measure, or mis-measure CFS symptoms, and how this may apply to Covid-19 (or other viral) long term illnesses.
Is there such I've missed?
For an example of the issues, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3071317/ - 'Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study'.
This paper attempts to measure symptoms 12 months out of SARS(a LOT like CFS), but it uses a scale unsuited to it - the https://www.ismanet.org/doctoryourspirit/pdfs/Beck-Depression-Inventory-BDI.pdf
Hence out pops the 'depression' in the title of the paper.
For some examples of 'depressed' scoring answers: In the context of a person with a severe physical illness 12 months after onset who can't work. (as above SARS paper).
2(d) I feel the future is hopeless and that things cannot improve
15(d) I can't do any work at all.
17(d) I am too tired to do anything.
20(d) I am so worried about my physical problems that I cannot think of anything else.
These items alone bring you one point away from 'borderline clinical depression'. It is hard to imagine a severely affected patient that wouldn't pick up enough points to get to moderate depression from their physical symptoms alone.
Many other scales share similar issues, they implicitly assume return to pre-disease physical health when writing the mental health questions.
I was thinking there was a place for a list of things not to do when doing a trial of a disease that you want to measure both physical and mental aspects of.
1) Avoid self-reports as much as possible when reasonable equivalents exist.
Employment, hours increases/decreases, ... are also useful proxies.
2) Carefully check scales used for cross-reactivity between physical and mental health problems.
3) If using scales not designed for mixed mental/physical illnesses, it is never appropriate to use them as more than a severity score. Drawing conclusions based on what the scale purports to measure risks misleading results.
4) Self reports must be entirely avoided when using treatments designed to alter patients perception of illness.
Is there such I've missed?
For an example of the issues, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3071317/ - 'Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study'.
This paper attempts to measure symptoms 12 months out of SARS(a LOT like CFS), but it uses a scale unsuited to it - the https://www.ismanet.org/doctoryourspirit/pdfs/Beck-Depression-Inventory-BDI.pdf
Hence out pops the 'depression' in the title of the paper.
For some examples of 'depressed' scoring answers: In the context of a person with a severe physical illness 12 months after onset who can't work. (as above SARS paper).
2(d) I feel the future is hopeless and that things cannot improve
15(d) I can't do any work at all.
17(d) I am too tired to do anything.
20(d) I am so worried about my physical problems that I cannot think of anything else.
These items alone bring you one point away from 'borderline clinical depression'. It is hard to imagine a severely affected patient that wouldn't pick up enough points to get to moderate depression from their physical symptoms alone.
Many other scales share similar issues, they implicitly assume return to pre-disease physical health when writing the mental health questions.
I was thinking there was a place for a list of things not to do when doing a trial of a disease that you want to measure both physical and mental aspects of.
1) Avoid self-reports as much as possible when reasonable equivalents exist.
Employment, hours increases/decreases, ... are also useful proxies.
2) Carefully check scales used for cross-reactivity between physical and mental health problems.
3) If using scales not designed for mixed mental/physical illnesses, it is never appropriate to use them as more than a severity score. Drawing conclusions based on what the scale purports to measure risks misleading results.
4) Self reports must be entirely avoided when using treatments designed to alter patients perception of illness.
