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

[trishrhymes]

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.

Interesting dilemma.

If you get children's permission to quote them, this could influence what they are willing to say. This would negate the value of the comments.

And if you don't get permission it's possibly illegal to quote them.

So I conclude they should not have been quoted.

 

[Snow Leopard]

The majority of this study was not done by Crawley and with the exception of the crap questionnaires used, most of the "main themes" found seem reasonable.

What does seem weird is the discussion about CBT - yes the study found that poor mood was associated with loss - no longer being able to do the things normal teenagers would do, due to illness. Yes this may fit a cognitive-behavioural model of the development of depression, but it cannot be fixed by CBT since the underlying causes for those cognitions eg loss due to illness, and behavioural aspects - functional limitations due to illness cannot be fixed because the cognitions/behaviour result not from a mental disorder, but an underlying physical disorder that cannot be fixed by trying to increase activity levels or being more positive.

The study also mentions "Activity management" which if done correctly, is of course PACING...

They then state that CBT may indeed be less effective due to this:

Clinicians should be mindful of the possibility that treatment approaches for fatigue, which emphasise establishing a consistent and achievable amount of activity every day, conflict with approaches that are helpful
for mood, such as engaging in activities that are enjoyable and/or give a sense of achievement. As young people concentrate on reducing activity to manage the CFS/ME, the paradoxical effect is that they do fewer enjoyable activities and are likely to have a sense that they have achieved less, which could compound their low mood.

They also state:

Further research needs to be done to develop treatment approaches that can be effective in the presence of both CFS/ME and depression, based on existing knowledge of the usefulness of selective serotonin re-uptake inhibitors (SSRIs) and CBT.

Yet SSRIs have consistently FAILED to demonstrate efficacy for depression in CFS or ME patients in blinded clinical trials, notably in contrast to other anti-depressants. Apparently they didn't bother to review the literature before stating this.

 

[taniaaust1]

'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’.

umm I thought that defination would describe what is known as "chronic fatigue" and not ME/CFS. What's the difference between her definition put there and just CF? Someone want to write to her and find out?

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.

umm this study is a joke. "probable" depression does this mean she was unable to tell who had depression or not? and then did a depression study on those who maybe didnt have it. A study of only 9. How does she get this crap published.

Sounds like she needs to get out of research! I dont care of the results as long as the research is being done good. How can you do a study of something on people with something when you arent even sure they have it and have that published?

 

[taniaaust1]

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.

thanks Valentijn for that info

and for adding the info so I know now she was diagnosing CFS based on having "one symptom" other then the fatigue. So I guess that is how one tells apart then CF and CFS In her eyes a person with chronic fatigue and who is a migraine sufferer is sadly someone with CFS.

 

[taniaaust1]

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

Positive result or not, Im against any study which doesnt use people who fit a good ME/CFS diagnostic criteria (minimum the CCC). To me this wasnt a ME study.

 

[Valentijn]

Positive result or not, Im against any study which doesnt use people who fit a good ME/CFS diagnostic criteria (minimum the CCC). To me this wasnt a ME study.

An interesting point is that 3 of the 9 adolescents reported that depression or whatever started before their CFS symptoms. Which could be an indication of how high Crawley's misdiagnosis rate is.

It also indicates that this study was even mixing different types of "depression" in the 9 which were selected. Some were likely reactive/situational, and some from another pre-existing cause.

 

[taniaaust1]

An interesting point is that 3 of the 9 adolescents reported that depression or whatever started before their CFS symptoms. Which could be an indication of how high Crawley's misdiagnosis rate is.
.

One thing I think we can be sure about with the definition she uses is that she would have a high misdiagnoses rate.

Ive been thinking about something, unfortunately these studies she's doing would be costing her next to nothing to do compared to other studies esp with that many patients. So she can do lots and lots of these studies (and then quote her own studies in future ones without making it clear it was her own study unless one investigates things further.. wessely used to do that some thing).

https://www.beyondblue.org.au/the-facts/depression/signs-and-symptoms (that's the most well known depression support org in my state. It says on thier website for symptoms of depression

Physical

• tired all the time
• sick and run down
• headaches and muscle pains
• churning gut
• sleep problems
• loss or change of appetite
• significant weight loss or gain

If you think that you or someone you know may be experiencing depression, completing our checklist

so isnt it interesting how her diagnoses for CFS when you dont need post excertional fatigue fits depression too.

 

[Keith Geraghty]

When I did my PhD, my supervisor told me a good qualitative study would need to have at least 60 interviews (and a triangulaion of methods) to be deemed 'good quality' - : I have, this year, read a number of studies by White and Crawley with interviews as low as 9 - if this woudlnt pass an MSc of PhD thesis board, I cant understand how it passes professional reviewers.

Crawley needs to talk to Prof Harrison on his work about how infections and inflammation cause depression - this would make the depression directly linked to the primary illness (ofcourse we could debate whether its primary or secondary - but did Crawley even mention this, sorry did the authors including Crawley consider this?)

I keep reading how these people are meant to be the worlds best, the UKs top, ME/CFS experts and I keep looking at their work and methods and I keep scratching my head.

 

[Aurator]

I keep reading how these people are meant to be the worlds best, the UKs top, ME/CFS experts and I keep looking at their work and methods and I keep scratching my head.

We all know they're the best only in the sense that they keep getting the funding, keep banging the papers out, keep getting getting the funding...
"Oh, but they get results as well", objectors will say; "the p-values tell us so".
Sure. Right.

I don't think anyone is in any doubt that this kind of science is rotten to the core.

 

[RogerBlack]

"Oh, but they get results as well", objectors will say; "the p-values tell us so".

I somewhat disagree.
Statistical papers are one thing.
Carefully done case reports can be useful - when the clinician is honest with themselves, and reports honestly the real outcomes of a non cherry picked dataset.

If effect sizes are large, and meaningful followup is done.

 

[slysaint]

This is certainly a way to destroy your credibility as a scientist.

so why is EC still held in such high esteem, and why does she keep getting funding? Doesn't anyone review her 'work'?

 

[worldbackwards]

so why is EC still held in such high esteem, and why does she keep getting funding? Doesn't anyone review her 'work'?

It's a confidence trick. They are interested in a field nobody else wants to know about and have used that, and their list of qualifications, to discredit the only people (the patients) who know better, all the while flattering doctor's prejudices and telling them what they want to hear. Why look any closer?

 

[Aurator]

I somewhat disagree.

I was being ironic, Roger.

 

[Snowdrop]

so why is EC still held in such high esteem, and why does she keep getting funding? Doesn't anyone review her 'work'?

It's also a bit of an issue of (EC et al) being the handmaidens to a system that rewards results that are politically expedient. They are heavily protected by their institutions who in turn are backed by a political agenda. They are beholden to them for money.

 

[Barry53]

Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) ... is defined as ‘generalised disabling fatigue persisting after routine tests and investigations have failed to identify an obvious underlying cause’.

Just a tad glib.

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.

[My bold]

A tacit admission that CBT/GET are not known to be helpful?

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

2. Young people tended to describe their experience of their depression as secondary to CFS/ ME, and as resulting from the impact that CFS/ME had on their lives.

Could it be that the young people were actually were listened to?

3. There was no unitary approach to management that young people found useful.

Not surprising.

4. Clinicians should aim to prevent the development of depression and take an individualised approach to treatment, taking into account patient preference and current best practice guidelines.

[My bold]

Is Ms Crawley tacitly (almost) conceding that the kids are right? That the depression is the result of the fact ME/CFS has blown their lives apart? Pity about the "current best practice guidelines" bit though, at least as they currently are.

5. Further research should focus on developing treatment approaches that can be effective in the presence of both CFS/ME and depression.

Hmmm ... so long as that treatment does not presume fixing the depression will fix the ME/CFS.

 

[Kati]

I wonder if Rituximab could not fix both ME and the accompanying depression in teens... just a thought.

 

[Barry53]

Young people with CFS/ME who have co-morbid depression are more disabled, and experience greater pain and worse fatigue than those without depression (Bould et al., 2013).

How loaded and unempathetic is that?

How about:-

"Young people with CFS/ME who are more disabled, and experience greater pain and worse fatigue, have worse co-morbid depression, compared to those with less severe physical symptoms."

 

[AndyH]

I have yet to encouter any child with ME/CFS that's depressed. I am sure ther may well be a few but what I see are how well children just get on with it. That said, it's clear that visits to clinics do temporarily depress children who are moderate or severe because they simply don't have the energy to go to clinics. From what I've seen and heard, that depression isn't in terms of their outlook but in terms of total fatigue that is often misinterpreted by professionals as depression. Of a severely affected child, that child who could barely move at the time was quoted as "shows signs of that of an extremely depressed child". That child was not depressed; not one bit. That child was very unwell indeed and barely able to communicate. That child was so unwell that she wouldn't have had the ability to be depressed if that makes sense but to many sufferers it will. There's no definition of what is meant by depression in this research. A twist of words perhaps or a total misconception of how sick ME children can present?

Where's the evidence that a third are depressed? Where's that research? I'd like to see the data.

 

[worldbackwards]

Where's the evidence that a third are depressed? Where's that research? I'd like to see the data.

Crawley has a legendarily liberal version of what she classes to be ME.

 

[Jan]

I have yet to encouter any child with ME/CFS that's depressed. I am sure ther may well be a few but what I see are how well children just get on with it. That said, it's clear that visits to clinics do temporarily depress children who are moderate or severe because they simply don't have the energy to go to clinics. From what I've seen and heard, that depression isn't in terms of their outlook but in terms of total fatigue that is often misinterpreted by professionals as depression. Of a severely affected child, that child who could barely move at the time was quoted as "shows signs of that of an extremely depressed child". That child was not depressed; not one bit. That child was very unwell indeed and barely able to communicate. That child was so unwell that she wouldn't have had the ability to be depressed if that makes sense but to many sufferers it will. There's no definition of what is meant by depression in this research. A twist of words perhaps or a total misconception of how sick ME children can present?

Where's the evidence that a third are depressed? Where's that research? I'd like to see the data.

They don't appear to know the difference between distressed and depressed. Just because a child shows signs of anger or distress regarding the illness doesn't mean that they are depressed. These poor kids can't say anything that isn't fluffy without being given a depressive diagnosis. I'm distressed and angry and upset and mad as hell with this illness and the lack of help, but I'm NOT suffering from clinical depression