Exploring anhedonia in adolescents with Chronic Fatigue Syndrome (CFS): A mixed-methods study, 2021, Smith, Crawley, Loades et al

Abstract

Background:
Chronic Fatigue Syndrome (CFS/ME) may get in the way of enjoying activities. A substantial minority of adolescents with CFS/ME are depressed. Anhedonia is a core symptom of depression. Anhedonia in adolescents with CFS/ME has not been previously investigated.

Method:
One hundred and sixty-four adolescents, age 12 to 18, with CFS/ME completed a diagnostic interview (K-SADS) and questionnaires (HADS, RCADS). We used a mixed-methods approach to explore the experience of anhedonia and examine how common it is, comparing those with clinically significant anhedonia to those without.

Results:
Forty-two percent of adolescents with CFS/ME reported subclinical or clinical levels of anhedonia. Fifteen percent had clinically significant anhedonia. Thematic analysis generated two themes: (1) stopping activities that they previously enjoyed and (2) CFS/ME obstructs enjoyment. Most (72%) of those who reported clinically significant anhedonia met the depression diagnostic criteria. Those who were depressed used more negative language to describe their experience of activities than in those who were not depressed, although the themes were broadly similar.

Conclusions:
Experiencing pleasure from activities may be affected in CFS/ME, particularly in those who are depressed. Anhedonia may get in the way of behavioural strategies used within CFS/ME treatments.

Open access, https://journals.sagepub.com/doi/10.1177/13591045211005515

 

AKA "our treatments don't work because the kids are depressed, not any other reason"

 

From the quotes, it's quite clear that the participants' boredom, lack of interest are the result of being severely fatigued/sick. They don't enjoy or look forward to doing things because they are too ill, or the activities they still can do are so limited that it leads to boredom etc.

I don't know the background of the term "anhedonia" but I doubt that it is should be used for the condition described above.

 

The researchers say that they use a child-centered questionnaire, RCADS in addition to HADS; it appears that this suffers from the same well-known problems as HADS. The RCADS47 can be found here and the scoring can be found here.

Almost all pwME are going to answer "often" or "always" to questions 11 ("I have trouble sleeping"), 19 ("I have no energy for things"), 21 ("I am tired a lot"), 25 ("I cannot think clearly") and 40 ("I feel like I don't want to move"). If you answered "always" to all five, that's a score of 15/30 on the major depression subscale to begin with.

As for the K-SADS structured interview - the questions pertaining to anhedonia are on p17 - I think it's unlikely that anyone will find a child with ME who doesn't "have to push yourself to do your favourite activities" or who doesn't "feel bored a lot now". Subthreshold anhedonia is defined in K-SADS as "several activities definitely less pleasurable or interesting. Or bored or apathetic at least 3 times a week during activities"; threshold is defined as "most activities much less pleasurable or interesting. Or bored or apathetic daily, or almost daily, at least 50% of the time during activities."

It seems to me that these instruments are manifestly inappropriate to assess anhedonia in ME patients as they cannot reliably differentiate between the effects of ME related physical incapacity and loss of interest occasioned by depression.

 

The lack of empathy is frankly amazing. They genuinely cannot imagine what it's like to be sick all the time. Either that or they shut it out because of their conviction that there is no actual illness. Which they insist they do so it kinda loops back to complete inability to understand the circumstances and their impact, of effectively being completely surprised by exactly what is expected.

Like finding that people experiencing a famine are hungry and being utterly puzzled by that fact and trying to find alternative explanations for why people who shouldn't be hungry are.

 

Gobsmacking given the length of careers here . So much time, so much funding and yet still Not a clue...

Inept dosnt really cut it. Perhaps @TiredSam will be able to advise if there is a better word in German as it tends to conjugate nuance well.

No doubt this will also be coming down the road for COVID kids too.
Perhaps someone should let them know.

 

I'm afraid I'm at a loss to find a suitable word in any language for this. Even a string of swearwords doesn't really do it justice.

 

The problem with that idea is that it would take away their whole world view, which is that they should be able to tell pwME how to act via the medium of CBT. If we are recognised as experts on our condition and how to cope with it (as we should be), they then lose their status as the 'experts', and they can't have that, given how fragile they are.

 

News flash:
"Anhedonia, which is one of the diagnostic criteria for depression, is present in people who have been diagnosed with depression"

Who would have thought it?

 

But isn't CBT a treatment for depression?

 

Oh yes.

CBT works for everything, apparently.

Nobody seems to think that's a problem.

 

@Hutan

Hold the phone, stop the presses! "Scientists discover that depressed people are generally more negative than non-depressed people".

That, combined with that hilarious K-SADS acronym made me think of this:

 

Rob Howard was marvelling about that fact a few weeks ago about a study that showed pretty much that: CBT works for everything, literally everything.

Didn't see anything wrong with that, in fact found it was pretty much spectacular.

Nobody ever smells their own hubris and snake oil peddlers never see anything wrong with their snake oil. As long as the money keeps flowing in, nothing else matters.