Discussion in 'Latest ME/CFS Research' started by Dolphin, Nov 3, 2015.
Free full text: http://bmjopen.bmj.com/content/5/10/e008830.full
All the symptom data from the 8 paediatric and 27 adult CFS/ME services in the UK from August 2004 to October 2014.
The following questions may be unreliable because of how they were assessed: "In the UK, adult and paediatric services also prospectively asked patients whether they had received a diagnosis of depression or anxiety, migraine, irritable bowel syndrome, Fibromyalgia or Chronic Regional Pain Disorder." This means people could have had them but not been marked down as having them. The HADS and SCAS scores were part of the assessment so weren't based on past assessments.
Patients were diagnosed with the Fukuda or NICE criteria.
They also compared UK and Dutch adolescents. However, this comparison is messy because:
(i) Apart from the presence of symptom questions, the questions used different questionnaires.
(ii) The Dutch patients were part of a trial so if it was felt they had a psychiatric disorder, they could b excluded from the study
Here's what the paper said on the comparison:
Here's what they say on the differences between younger and older children:
Judging by the pre-publication comments, in an earlier version they said such differences could mean adults and children should get different treatments but this was dropped from the final version.
One of the authors, Esther Crawley, said this previously as justification for testing the lightning process in children.
One potentially interesting thing is they resisted talking about CFS or ME as a functional somatic syndrome/similar. From the pre-publication history:
They don't adjust for multiple testing, which may be reasonable:
From the pre-publication history:
The pre-publication history is here:
I think the reviewers make some points about the paper and data which aren't or can't be fully addressed.
I would be interested to know how they can be sure that the incidence of cognitive dysfunction is lower in children <12 years old. How many children would accurately be able to describe cognitive change or even be aware of change?? I'm not sure that I would have been able to report cognitive change as a child, particularly if asked as a young child.... I can't see any measure of cognition being used, so presumably this is self-report?
Good point, I think. I think this sort of problem could affect lots of their comparisons.
No tests of cognition mentioned so self-report (perhaps parents also commented in assessment but no mention).
It would be interesting to know how people of different ages reported symptoms for better understood conditions.
Assessing cognitive function and accurately characterizing PEM are both difficult.
Several young people (with ME) who I know cannot describe their physical or cognitive impairments - they may only be able to say they don't feel well/at baseline.
One young person I know, for instance, one day said "My head feels different."
When asked for more details, they couldn't describe what was different, they could only say that it felt much better. But they had never identified their head as hurting before this one instance where it felt better.
The following day it was back to usual and has remained.
Sadly, because no influencing factors could be identified, no reasonable steps could be taken to alleviate the headache.
Similarly, some young people can only say that their ability to think/process info is off - they are unable to be more specific.
And time likely plays a role also. Many young people who have been sick for a long time, forget what normal feels like which also makes it difficult to say what does/doesn't feel right.
This is a very good point. My daughter has had ME half her life. She is currently functioning relatively normally -- married, working full-time, etc. I asked her if she felt she was finally back to normal and she replied, "I don't remember what normal feels like anymore. All I can say is that I feel better than I did when I was sicker." It breaks my heart that this is the world my ME kid lives in, even though she's doing very well at the moment. She doesn't remember what it's like to feel truly healthy.
When I got ill at age 10, I was able to understand that something was different cognitively, yet I don't remember ever describing it or being asked.
With hindsight years later, I remember feeling very fogged, and my ability to do maths and in particular mental arithmetic completely vanished. I couldn't hold numbers whilst working on the next part of an equation for example. By the time I'd worked out the next part, I'd totally forgotten the answer to the first part. Seemingly overnight, I completely lost the ability to do long division and fractions. It was weird and I remember being upset because I couldn't keep up with peers who I had previously academically equalled.
My brain seemed to have slowed down a lot. I felt as if I was wading through mud while trying to process thoughts when addressing schoolwork questions/problems etc. If more than one person spoke I had trouble following. My mother was a teacher and would give me the schoolwork to do to try to keep up when I was housebound. Half the time I didn't do it. I was so physically shattered that my mind was exhausted too - she'd come in and find me lying asleep on the floor next to the table! Thsnkfully she never tried to make me - she could see I was too ill.
No one ever asked me about it. They were just interested in physical wellness - as in was I well enough to go to school. I'm not so sure I really understood or recognised exactly what was happening. It was only recently that I realised how odd and abnormal it was.
Skating on thin ethical ice...
Yes, it sucks!
I simply can't remember what it is like to be "normal". I am however sure that it is not normal to have a constant headache, aching muscles and brainfog for 15 years continuously.
I started having abnormal fatigue at age 15 and definitely did not fully realize how abnormal it was. My guess is that younger people have very little awareness about the existence of chronic disease and may not interpret symptoms as disease but rather find them confusing. If the family is not open to the possibility of disease, they may also lack the self confidence needed to fully express how unwell they're feeling.
If my guess is correct, children should make easy targets for symptom denying psychoquackery. It's very sad.
I think the gender imbalance, with roughly 3x as many women as men, is one of the most striking and understudied aspect of the illness. That this new study also finds the difference emerging at around puberty adds weight to the importance of sex differences. Typically, but not always, autoimmune diseases affect more women than men.
See this Norwegian study that found the same thing (ref 1 in above study), again with the sex differencce at around the time of puberty.
Copied from elsewhere:
This graph of new cases from a large Norwegian study (discussed on this thread):
[Figure 1 from: Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012]
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