Crawley: ‘It’s personal to me’: A qualitative study of depression in young people with CFS/ME

[Cheshire]

‘It’s personal to me’: A qualitative study of depression in young people with CFS/ME

Anna K Taylor, Maria Loades, Amberly LC Brigden, Simon M Collin and Esther Crawley

Centre for Child and Adolescent Health, School of Social and Community Medicine, University of Bristol, UK
Department of Psychology, University of Bath, UK

Abstract
Background:
Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has a prevalence of 0.4–2.4% and is defined as ‘generalised disabling fatigue persisting after routine tests and investigations have failed to identify an obvious underlying cause’. One-third of young people with CFS/ME have probable depression. Little is known about why depression develops, the relationship between depression and CFS/ME, or what treatment might be helpful.

Methods:
We conducted nine semi-structured interviews with young people with CFS/ME (aged 13–17 years, 8/9 female) and probable depression, covering perceived causes of depression, the relationship between CFS/ME and depression, and treatment strategies.

Results:
Most thought CFS/ME caused depression. Many discussed a cyclical relationship: low mood made CFS/ME worse. A sense of loss was common. CFS/ME restricted activities participants valued and changed systemic structures, causing depression. There was no single helpful treatment approach. Individualised approaches using combinations of cognitive behavioural therapy (CBT), medication, activity management and other strategies were described.

Conclusion:
This study suggests that depression may be secondary to CFS/ME in young people because of the impact of CFS/ME on quality of life. Clinicians treating young people with CFS/ME need to consider strategies to prevent development of depression, and research is needed into approaches that are effective in treating CFS/ME with co-morbid depression.

http://ccp.sagepub.com/content/early/2016/10/13/1359104516672507.long

 

[trishrhymes]

'Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has a prevalence of 0.4–2.4% and is defined as ‘generalised disabling fatigue persisting after routine tests and investigations have failed to identify an obvious underlying cause’.

So now we have it in writing. Crawley thinks ME is fatigue. She's using the Oxford definition still. Oh dear.

And on the basis of 'structured interviews' with nine youngsters, she concludes that ME causes depression. I wonder whether she was able to tell whether some of them actually had primary depression causing their fatigue.

Edit: Or the third option, that there is some other factor causing both depression and fatigue.

I haven't read the full paper. I can't bear to.

 

[Valentijn]

To be diagnosed with CFS/ME, young people must have experienced persistent or recurrent fatigue which has substantially limited their physical functioning for at least 3 months, with the presence of at least one additional symptom, including headache, joint and muscle pain, cognitive dysfunction, painful lymph nodes, sore throat, sleep disturbance, dizziness, nausea, flu-like symptoms or heart palpitations (National Institute for Health and Care Excellence (NICE), 2007; RCPCH, 2004).

Funny how Crawley always omits to mention that ME/CFS fatigue is "characterised by post-exertional malaise and/or fatigue", as described by NICE. She literally seems to ignore it in every paper. She even leaves off "physical or mental exertion makes symptoms worse" from NICE's list of optional symptoms. She really is not qualified to diagnose anyone, in any circumstances

Young people were eligible if they were aged between 12 and 18 years, had a primary diagnosis of CFS/ME and had co-morbid low mood. Low mood was defined as a depression subscale score of >9 on the Hospital Anxiety and Depression Scale (HADS) (Zigmond & Snaith, 1983) either at assessment or at subsequent treatment appointments with the specialist CFS/ME service.

HADS is a horrible questionnaire for people with chronic, multisystem, and/or untreated diseases, especially if they are outpatients. HADS is designed for people having a normal hospital stay for acute problems, and are being supported. It equates the incapacity to do things with disinterest due to depression.

She's also screwing around with the scoring again. A score of 11 or greater is needed to diagnose depression using HADS. But she's using a score of 9, citing to a paper from 1999 which doesn't seem to have any support. Another study of HADS in healthy adolescents has 11% as depressed if 10 or higher is used, or 34% if 7 or higher is used.

 

[Valentijn]

Awareness of limitations and repercussions apparently equates to stress stopping people from doing things:

In addition, the experience of the condition was associated with anticipation of negative consequences and stress, contributing to avoidance of activity:

Sometimes I arrange to meet up with friends and I can’t even . . . turn up because I’m that stressed about going and being sick or having diarrhoea and that, and I just get so worked up about it, and like, even going on public transport I get quite worried. (YP6)

Ironically, the person they hold up as having a positive outlook attributed it to pacing:

The role of appraisal (i.e. interpretation) in mediating the relationship between activity restriction and low mood is further illustrated by the experience of one participant who talked about their improvement in mood. Although still experiencing activity restrictions, this participant was engaging in active management strategies and held more positive beliefs, such as a sense of self-efficacy:

I’ve got my limit and as long as I stay within the limit, I can have friends round for a couple of hours, I can do that, like I can do that safely without feeling awful the next day, so that’s why I look forward to things a little bit more because then I know I can do them and still be OK. So . . . I know my limits and I know when I need to get rest so I can control it a little bit more. (YP5)

The children with ME are blamed for how they react when friends dump them:

The participants described their responses to these challenges, describing strategies such as lack of communication, passive communication, withdrawal and avoidance:

 

[Valentijn]

There is potential for overlap in symptomatology between depression and CFS/ME, but the young people in our study identified their symptoms of low mood and symptoms of CFS/ME as being separate.

Depression and ME/CFS only resemble each other if you're an incompetent quack. The symptoms are completely different, unless you have an unhealthy fixation on reducing everything to simple fatigue.

The self-report method of screening for depression is not as robust as using structured clinical interviews; therefore, some of those recruited may not have been diagnosed with depression had they had the structured clinical interview.

Yeah, here's our conclusions about ME/CFS patients with depression, but we didn't actually check to see if they're really depressed or not

It's quite bizarre that they're claiming this as a "Key Point" and putting it in the abstract, despite that it's just a tidbit pulled from another study:

Approximately one-third of young people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) have co-morbid depressive symptoms.

And the study they pull that from (another Crawley masterpiece) uses a different diagnostic method and different age ranges, to conclude that depression is 10 times as common in children with ME/CFS compared to healthy children.

This is an absurd level of amateurism from a supposed CFS expert.

 

[Luther Blissett]

In another example, the negative appraisals that the participants made, related to restriction imposed by the condition, meant that they were unable to take pleasure from activities in which they did partake:

If I went out with my friends . . . I think well I was happy about seeing them but then I’d think about the downside of it like if I wasn’t going to see them for a long time afterwards and then I start thinking about the downside rather than that I’d seen them and that’s the good side. (YP2)

'Unable to take pleasure from activities...' , 'I think well I was happy about seeing them...'

Maybe it's just me, but my reading says the young person was both happy and sad.

I was one of those rare species of child that actually enjoyed going to school . . . they had a student that enjoyed learning and they sort of took that away from me with the way they treated me. And I, it just kind of made me feel not worth it . . . they stopped paying attention to me and it kind of made me feel like a statistic or a problem that was going to affect their results table, and that was quite a horrible feeling really. (YP3)

Seems like a wise reaction to a bad situation, with insight and a wider grasp of the social situation.

At times, participants also talked about having to think more about what activities they invested energy in, which in itself seemed to detract from the experience of the activity itself to some extent, thus undermining their sense of enjoyment and/or achievement in the activity:

It’s quite upsetting really to sort of not be able to do something as simple, like, um, like doing my hair, cos other people, like, it used to be sort of something I just did, it wasn’t . . . but now it’s like something that I’ve really gotta think about, ‘do I do this, or do I not?’ which is quite difficult because it’s not, like, you shouldn’t have to, it’s not natural to have to stop and think ‘do I have the energy to do this or do I not?’ kind of thing. So it’s quite, it takes quite a bit of getting used to. (YP3)

Way to make loads of assumptions about the personal value of doing hair.

The young person seems to me to be saying that doing their hair before was something 'simple' which suggests no elaborate rituals, or instrument use, which I would expect of a young person who had a sense of 'enjoyment and/or achievement in the activity'.

Some young people just see hair as hair.

This is not in my view a sign of current or emerging pathology.

Being unable to do routine things does indeed take 'quite a bit of getting used to.'

...includes developing relationships with other young people with CFS/ME. They talked about the potential being of feeling understood and less alone:

Talking to someone else with ME . . . might not make you feel so isolated. (YP1)

Because a well known feature of Depression is the enthusiasm for creating and developing new relationships.

 

[RogerBlack]

Conclusion:
This study suggests that depression may be secondary to CFS/ME in young people because of the impact of CFS/ME on quality of life. Clinicians treating young people with CFS/ME need to consider strategies to prevent development of depression, and research is needed into approaches that are effective in treating CFS/ME with co-morbid depression.

If you didn't know the author, this might be quite a positive result.
Does anyone really believe that this isn't true?
Of course, if this study is aiming at getting more funding for CBT treatment around false illness beliefs with a poor case definition in children - ...

 

[worldbackwards]

If you didn't know the author, this might be quite a positive result.
Does anyone really believe that this isn't true?

Of course. But considering how she operates, it's a stretch to take anything at face value from her anymore. And her constant expansion of the pool of patients that she treats only serves to muddy distinctions and make her methods of treatment look better than they are, rather than find out anything about ME at all - it's all 'fatigue' to her.

The children with ME are blamed for how they react when friends dump them

I wonder what it would do to a child's mental health to have their every action scrutinised, pathologized and declared wrong by a figure of authority, who's perceived 'right' way of doing things just made things worse, but had to be adhered to to gain approval.

Perhaps Dr. Crawley should do a study. Perhaps she already is.

 

[Valentijn]

If you didn't know the author, this might be quite a positive result.
Does anyone really believe that this isn't true?

This study suggests that depression may be secondary to CFS/ME in young people because of the impact of CFS/ME on quality of life.

This first part is reasonable - chronic illness can create situational depression. But if you factor in other claims which tie in with this one, such as 10x the rate of depression in ME/CFS versus normal population, resulting from severe methodological fiddling, it doesn't look so good.

Clinicians treating young people with CFS/ME need to consider strategies to prevent development of depression ....

This is implying that every young ME patient should be treated as if they have or will have depression, regardless of whether or not they actually do. Given that it's a minority with depression, even when astoundingly overdiagnosed by Crawley, this is a somewhat repugnant attempt to overreach.

... and research is needed into approaches that are effective in treating CFS/ME with co-morbid depression.

And the plea to waste more money on largely irrelevant research while biomedical research is grossly underfunded. And no doubt she wants that money to be given to herself for further research, despite that she's just finished demonstrating her own incompetence.

 

[Ysabelle-S]

In my opinion, all funding to this woman and her cronies needs to be cut off. Those children need a proper specialist who actually understands what ME is and how to diagnose it. She can't tell the difference between ME and depression? She hasn't got a clue, and now she's on the MEGA list. I will not support anything that includes Crawley.

As for this:

'Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has a prevalence of 0.4–2.4% and is defined as ‘generalised disabling fatigue persisting after routine tests and investigations have failed to identify an obvious underlying cause’.

I didn't have fatigue when I fell ill at 19, or the year after that when I first looked at an ME leaflet. I had immune, viral, neurological, cognitive and eyesight problems, irregular temperature control, and a whole bunch of other things completely unrelated to that ridiculous and incompetent definition of ME.

 

[slysaint]

So many things wrong with all of it.
But one thing that I can't understand is the questionnaire includes prompts throughout; I worked in market research many years ago and the one thing we were taught not to do (because it obviously influences the responder) is prompt. They were blatantly telling them what to say.

 

[eafw]

This is lazy, meaningless non-research. There's a lot of it around unfortunately, but this is a supposed "expert" in the field building a career on this rubbish.

They even say in the paper "Several studies have shown that chronic illness in childhood has a substantial impact on functioning and can lead to a sense of loss and psychological distress". So, nothing new here at all (never mind the whole "events that are distressing to humans can cause distress" statement of the obvious thing).

And her definition of ME as "generalised disabling fatigue persisting after routine tests and investigations have failed to identify an obvious underlying cause". Maybe we could ask the CMRC if that's how they see it too ?

 

[Jonathan Edwards]

This is lazy, meaningless non-research. There's a lot of it around unfortunately, but this is a supposed "expert" in the field building a career on this rubbish.

The message seems to be that if you want to answer a research question and cannot think how to do it why not ask the patients to tell you the answer?

It seems to me that if there is any material here it has nine authors, none of whom are mentioned.

 

[Jonathan Edwards]

And what exactly is this phrase 'it's personal to me' doing in the title of this 'research paper'? I should think ME is personal to the person with it.

I get the sense of a troupe of majorettes coming out before the American Football game showing off their 'qualitative research' (nudge nudge) before the heavyweight almost-controlled trialists come on. This is certainly a way to destroy your credibility as a scientist.

 

[trishrhymes]

i've just glanced at the paper to confirm what others here have revealed - she quotes verbatim whole sentences from what the youngsters said. Surely this is unethical in a study involving 9 children.

If the PACE authors could pretend individuals might be identifiable from an array of numbers, how much more might these children be identifiable by, for example, their parents or other family members, teachers etc. who might well read the paper.

Any one know what the ethical law is on this?

 

[RogerBlack]

Any one know what the ethical law is on this?

Paraphrasing the PACE trial judgement - it is not 'identification' if the person themselves can identify their comments.
If the patients did not give permission for their words to be published, then it might be problematic legally only if others, with some degree of likelyhood could identify them.
However - if they gave permission, or their parents - it's not a legal issue.

 

[Luther Blissett]

But one thing that I can't understand is the questionnaire includes prompts throughout; I worked in market research many years ago and the one thing we were taught not to do (because it obviously influences the responder) is prompt.

How would you rate this piece of poor research on a scale of 1-5?
1 - An abomination to the world of Science
2 - Bog standard poor
3 - Should do better
4 - Full of faults but well meaning
5 - Un-interpretable but at least they tried

They even say in the paper "Several studies have shown that chronic illness in childhood has a substantial impact on functioning and can lead to a sense of loss and psychological distress". So, nothing new here at all (never mind the whole "events that are distressing to humans can cause distress" statement of the obvious thing).

Exactly. I remember reading about a young boy with disabilities, who had never been invited to a birthday party by his classmates, even though they were not overtly hostile to him. Parents were scared in case something happened at a party. It was obviously his mental attitude that was at fault.

Nevermind all the studies showing incidence of bullying to disabled children, etc. If only there was such a subject as Disability Studies in which comparisons and contrasts could be studied.

Bad at the Bio, bad at the Psycho, and bad at the social.

 

[CFS_for_19_years]

Conclusion:
This study suggests that depression may be secondary to CFS/ME in young people because of the impact of CFS/ME on quality of life. Clinicians treating young people with CFS/ME need to consider strategies to prevent development of depression, and research is needed into approaches that are effective in treating CFS/ME with co-morbid depression.

Assessment and Treatment of Patients with ME/CFS: Treatment Guidelines for Psychiatrists
Eleanor Stein MD
2005
http://emerge.org.au/wp-content/uploads/2015/01/Clinical-Guidelines-for-Psychiatrists.pdf
Page 12

Management of Depressive Reactions to ME/CFS and its Effects
The best antidepressant for patients with ME/CFS is improved physical health and quality of life.

The above paper does a much better job of describing the management of co-morbid mood disorders.

 

[Jonathan Edwards]

Paraphrasing the PACE trial judgement - it is not 'identification' if the person themselves can identify their comments.
If the patients did not give permission for their words to be published, then it might be problematic legally only if others, with some degree of likelyhood could identify them.
However - if they gave permission, or their parents - it's not a legal issue.

I think it might well be a legal issue in fact. I see no justification for parents giving permission for children's accounts of their illness to be published. Moreover, informed consent for minors is an extremely difficult area in law and rightly so because minors may very well have very different perceptions of what they want to be made public (or what sort of treatment they would have wanted) in years to come.

Since the paper has no scientific merit I think it might be very difficult to justify verbatim children's reports. Stigmatisation of illness is a popular buzzword. This looks to me like a typical way of blowing up the stigma by busybodies.

 

[A.B.]

One gets the impression Crawley is shifting her focus to a new set of symptoms that can serve as career opportunity, now that the future of treating physical symptoms with CBT and GET and the like looks increasingly grim.

Psychoanalysis used to be an alternative treatment for cancer. When that idea became too bizarre, the therapists stopped trying to cure patients and instead started emphasizing how patients really needed a therapist to deal with having cancer.

A positive Rituximab phase 3 trial will destroy the illusion that CBT and GET can treat the mechanisms involved in ME/CFS*, and therapists will start looking for ways to keep their patients. What better way than to establish this idea that even though it's now a proven physical disease, there's still a lot of psychopathology that must be treated. For the good of the patients of course.

* if recent development on the PACE trial front are not faster.