Discussion in 'PsychoSocial ME/CFS Research' started by Dolphin, Sep 25, 2020.
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This whole field is a sick joke. All substance is irrelevant. Burn it all down and salt the ashes, there is nothing of value to preserve here.
This is the second study with data from the MAGENTA Trial. They measured the rates of anxiety, depression, and other mental health disorders in this patient sample using a diagnostic interview (KSADS, The Kiddie Schedule for Affective Disorders and Schizophrenia).
This is apparently considered the gold standard to measure these mental health disorders in adolescents, so it can be seen as a benchmark to test the accuracy of questionnaires such as Hospital Anxiety and Depression Scale-Anxiety (HADS) which is used a lot in ME/CFS studies.
They were able to do the KSADS interviews on 164 patients. The results showed that 35.4% met the criteria for at least one mental health diagnosis, 20% met criteria for major depressive disorder and 27% met the criteria for at least one anxiety disorder. These figures are significantly lower than what has been reported previously.
The results also showed that the HADS didn't perform well compared to the KSADS as benchmark. The authors write: "the HADS did not meet the required accuracy criteria for either depression or anxiety; we would therefore recommend that services use other PROMs such as the RCADS for anxiety."
With interviews, you're also able to zoom in on the patients that did have anxiety or depression. In this regard the authors write:
One downside of the study is that 37% of contacted patients either declined participation in this study or withdrew.
Studies of other adolescent groups with chronic illnesses - how do these compare?
To have your life put on hold before your identity is fully developed is a hard situation to cope with.
To have a chronic illness that is so poorly understood , and be gaslit adds another level. I am always surprised at the sheer emotional resilience of these kids, a resilience that is rarely recognised.
Interviews could be difficult as it can exacerbate an already asymmetric power balance. Someone would need to be skilled at drawing info out and aware that they may be being spun the story kids think they want to hear. That can be more difficult than it sounds.
With the level of missing data in these studies, it may be difficult to generalize to the wider population. Again, missing data means something - is it ever pursued?
This is from the paediatric team who regularly conflate CF, think severe means still capable of going to school , and have been called out over an inability to recognise ( and therefore treat) comorbidities ( POTS/ OI), and made families lives hell via their input in expanding the definition of Munchausen' s via its relabellung as FII and disseminating this to police, social services and teachers
Is it little wonder recruitment is difficult for their studies?
Although presumably it gives considerable room to the prejudices and assumptions of those conducting the interview. They say it's the 'gold-standard' but that seems to mean, most optimistically, 'best of a bad lot'.
Is there a typo in your bit quote @Michiel Tack ? I wasn't quite clear what your bit meant.
If anhedonia is taken to mean a true inability to find pleasure in activities, that's one thing, but I've heard how some medics can class the reduced likelihood of taking pleasure in activities, as a result of somatic symptoms (headaches, muscle pain, etc), as a form of anhedonia. If 'depression' in this group is taking a different form to that normally seen, maybe it's a different thing?
I don't know. It seems likely that living with a chronic health problem would mean that depression would be more likely, and that depression would make fulfilling the criteria for CFS more likely, but I don't have much confidence in these researchers doing the gold-standard of anything.
In the paper (I've not read the full paper) they say:
Thanks for the notes @Michiel Tack
Yes, sorry. I meant to write: "With interviews, you're also able to seem zoom in on the patients that did have anxiety or depression."
I think that doing interviews is an improvement compared to questionnaires because the patient has more chance to explain what he/she means.
So I think it is interesting that this study, which used interviews, found lower prevalence rates of depression and anxiety than what has been reported previously, with questionnaires. In the past ME/CFS patients have repeatedly made the criticism that those questionnaires (such as HADS) overdiagnose mental disorders in ME/CFS because of overlap between symptoms or simply because symptom labels are being interpreted wrongly.
It would be interesting to have more data on the HADS compared to the interview: did the HADS over- or underdiagnose patients with depression or is it simply that it diagnoses a similar rate but in different people?
The interviews were done by psychology students with a couple of days training. I wonder how much depth of answers can be elicited from sick teens with ME talking on the phone to a student they have probably never met and asking them difficult to think about on the spot questions.
I don't think I'd do too well talking about my psychological state in such circumstances. And as a young person talking to a stranger, there's the pressure to get the 'right' answer, and to get the whole thing over as quickly as possible.
Isn't this just saying that people with CFS/ME (sic) have CFS/ME - which means they have symptoms that are common in CFS and can't enjoy their usual activities because of CFS/ME?
Isn't this just saying that people with CFS/ME don't have full depression, just some symptoms that overlap somewhat with those seen in depression?
Why doesn't anyone in this field actually use their brain?
Sadly, they have boxed themselves in so much with their own constructs that brains only operate in narrowly defined ways. A study in itself.
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