Much has been said about patients supposedly misinterpreting emotional symptoms for physical symptoms, but what about misinterpreting neurocognitive impairments and physical symptoms of PENE for "emotional" problems? SF-36 does not cover neurocognitive impairments very well. A patient may feel "emotionally" exhausted due to PENE, regards "physical health" as strictly related to symptoms and sensations of the body rather than etiology, then say "Yes" when asked:
During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?
a. Cut down the amount of time you spent on work or other activities?
b. Accomplished less than you would like?
c. Didn’t do work or other activities as carefully as usual?
And to repeat a previous point, role emotional scores were low but higher than everything else.
I don't think you can be expected to separate emotion (or mood) from physical and/or the effect of depression experienced in a chronic condition like ME from some of the symptoms of ME.
I could also say the same about other chronic illnesses too - I know how much my Mum struggles with Rheumatoid Arthritis for example especially when experiencing - what we might term - a 'flare' after doing too much i.e. stepping outside of her own 'pacing' or when she knows that the grandkids are coming to stay and she will want to do 'more than is good for her'.
Be very interested to learn the proportion of people with a chronic illness who have also been prescribed anti-depressants or have received some form of treatment for depression. I imagine it to be quite high.
All we can hope is that appropriate 'filtering' occurs. At present there is a great emphasis - as we know - on bio-psycho-social in terms of treatment. For us (and other chronic conditions) the emphasis is on the psycho-social and this naturally will encompass similar forms of approach as used in treatment of depression e.g. CBT.
Whether or not the same chemical mechanisms are involved in ME as occur in depression e.g. some of the neurotransmitters; and whether or not treating them with what are commonly recognised as anti-depressants serves a purpose within the ME model as it does in the model for depression: is an ongoing debate - but one that was again touched on my the reposting of I think that
Maes paper and certainly by the Drug-repurposing conference presentation by CFIDS that we posted an
article about.
There are of course different forms of depression. For some of us - including me - the instances of depression are directly a result of a) being knocked out of my career and former life without adequate explanation or expected treatment; and b) periods of inescapable relapse and even on occasion inconvenient 'flares'.
Others may have had depression before their ME was triggered and diagnosed. The reason for the diagnosis may be totally different from the depression, but we do know that some have this subsequent diagnosis as a result of a psychological episode e.g. something significant and disturbing that had happened in their life going largely unresolved and even unrecognised.
There may even be a genetic predisposition towards depression. Though I never really looked too much into this. But you cannot say that depression and chronic illness do not go hand in hand.
If a doctor is being reminded to consider depression as well as other exclusionary diagnoses before a diagnosis of ME is delivered; I can't see anything wrong with that. PEM might help distinguish those with 'only' depression from those with ME but it isn't (yet) something specifically able to be tested for: and has yet to be firmly established as something that might be.
If a patient with ME (and experiencing depression) is discharged from specialist care it may always be that this discharge is a result of the fact that the symptoms associated with depression and life with a chronic illness - have been resolved or helped: and not necessarily the symptoms or disease that is ME. And I can't see anything wrong with that either.
Distinguishing between the two - and therefore measuring the effectiveness of treatments in relation solely to ME - will ever remain difficult until we establish biomarkers or better means of measurement and indeed treatment itself.
However, even if a better treatment for whatever model of ME is established through science becomes available: there will ever be a need for help in learning to cope with a life of chronic illness even if that illness becomes one of clearer remission and relapse: a protocol that occurs in for example MS.
Even then distinguishing symptoms of 'life with chronic illness' from the illness itself (not forgetting depression is a chronic illness too); will remain difficult for the doctor trying to help; and for the patient completing a questionnaire that inquires about emotion.