Discussion in 'ME/CFS research' started by Andy, Feb 26, 2019.
Paywalled at https://adc.bmj.com/content/early/2019/02/23/archdischild-2018-316450
Does this link with the full PDF work for others as well?
Not for me. In the UK it says I have to pay £27.60 for the full text.
Oh, well. It's a public health library offering the service for me then due to the IP address. Thanks for letting me know.
Here's a quote I found interesting. CBT is less offered in Victoria than in other states. Wonder why? But the poor kids still have to go through sleep hygiene and GET..
Sleep hygiene was a treatment strategy recommended to almost all patients (95%), with graded exercise therapy, a modified school programme/home tutoring, pacing/balancing activities or symptom management with medication/supplementation frequently recommended. There were no significant differences in treatment strategies used for Victorian patients compared with those in other states, with the exception of cognitive behavioural therapy, which was reported to be less likely to be recommended in Victoria than in other states (Victoria: 19%, other states: 71%, χ2=44.50, p<0.001).
That’s a huge difference in CBT recommendation in Victoria and the only thing I can think of is that the Royal Children’s Hospital is in Melbourne and has a number of experts with active teaching roles.
Sci Hub link, https://sci-hub.tw/https://adc.bmj.com/content/early/2019/02/23/archdischild-2018-316450
It's a useful study. One problem is the commentary around rates of depression and anxiety in first degree relatives.
This makes it sound as though young people diagnosed with CFS are more likely to have first degree relatives with anxiety or depression than young people without CFS. But no comparable rates are given for young people without CFS. Here's some data on depression and anxiety rates from Beyond Blue - an Australian mental health charity:
Message: One in seven Australians will experience depression in their lifetime.
Breakdown: 15.0% of Australians aged 16 to 85 have experienced an affective disorder1* This is equivalent to 2.83 million people today.
Message: One quarter of Australians will experience an anxiety condition in their lifetime.
Breakdown: 26.3% of Australians aged 16 to 85 have experienced an anxiety disorder.2** This is equivalent to 4.96 million people today.
Anxiety disorders and depression appear to be extremely common in the general Australian population. Therefore the rates of depression and anxiety disorders in first degree relatives of young people with CFS (that's the siblings and parents) don't look particularly interesting.
The rate of CFS in first degree relatives (13.4%) is pretty high though, given the much lower incidence in the general population.
To be fair @Hutan, a parent with a child with ME *is* more likely to be anxious and/or depressed if they are confused and scared about their child’s illness, fighting with disbelieving medical professionals and possibly also family members that there is anything wrong, and feeling helpless that they are unable to help their child. I actually think it would be pretty amazing for a parent with a child with ME in the acute phase to not have anxiety, depression or PTSD, though I think these would develop as a result of the illness in their child than be some sort of cause, which is just ridiculous.
Anxious/worried/sad/upset are all different things to having an anxiety disorder or depression. But sure, we might hypothesise that a parent of a child with ME is more likely to have an anxiety disorder or have clinical depression as a reaction to the difficult situation. Or that the parent might actually have CFS but be misdiagnosed as having depression. Or we might hypothesise that the depression of a parent causes CFS in the child or that there is some common genetic cause for depression, anxiety disorder and CFS.
But the data from this study did not support any association between [CFS in the young person] and [anxiety disorder or depression in first degree relatives]. That's my point - there's no evidence here of a greater incidence of anxiety disorder or depression in the first degree relatives of young people with CFS.
And yet the paper doesn't say anything like that. Instead it talks about other studies that did 'suggest a likely association'.
And that non-result and obfuscation is given a place in the Discussion.
I thought this was interesting:
I can't see why the ANA test would be more relevant to a paediatric population than an adult one. I think the finding that 23% of the young people tested are positive for ANA suggests that this test should be a guideline recommended test for both adults and young people.
Edit: The paper doesn't say what percentage of the young people had the ANA test though. That seems to be in an online supplement. Does anyone have access to that?
Am I the only one having trouble accessing this paper? Even the Sci Hub link doesn't seem to work for me.
Worked for me yesterday.
I’ve summarised the full paper here if you are interested ‘Children with chronic fatigue syndrome often wait more than a year for diagnosis’
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