Paediatric chronic fatigue syndrome: 25 year perspective, 2020, Loades, Crawley, Chalder et al

Andy

Andy

Senior Member (Voting rights)
Over the lifetime of Clinical Child Psychology and Psychiatry, there has been considerable progress in understanding the epidemiology of Chronic Fatigue Syndrome (CFS), also known as myalgic encephalomyelitis (ME) and some progress in testing treatment approaches. Twenty-five years ago, clinicians and researchers did not believe that CFS existed in primary school children, little was known about the experience of children, and there were no randomised controlled trials testing treatment approaches. In this review, major developments in epidemiology, knowledge about clinical presentations and correlates, impact of CFS and treatment approaches will be highlighted. We are clinicians and researchers working in specialist CFS services in the United Kingdom.

CFS has been a defined diagnostic entity since 1991 (Sharpe et al., 1991). There are several different diagnostic frameworks for diagnosing CFS (Carruthers et al., 2011; Fukuda et al., 1994; NICE, 2007; Sharpe et al., 1991). All include ongoing, debilitating fatigue which is not secondary to another medical condition or to exertion. Concomitant symptoms include general malaise, headaches, muscle and joint pain, nausea, disrupted sleep, dizziness and cognitive difficulties. Initially, the diagnostic criteria for adults were applied to children and young people. In 2004, the Royal College of Paediatrics and Child Health (RCPCH, 2004) recommended that fatigue lasting > 3months was sufficient, a shorter duration than is required for adults. This has been reflected in some but not all the diagnostic frameworks. Here, we predominantly draw on evidence from clinical cohorts with a confirmed CFS diagnosis and evidence from general population studies of chronic debilitating fatigue, not necessarily formally assessed and diagnosed CFS.
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Paywall, https://journals.sagepub.com/doi/10.1177/1359104520978461
Sci hub, https://sci-hub.se/10.1177/1359104520978461
 
Just read the abstract as I can not face reading the article but several things jumped out:
- is there any progress in testing treatment approaches, given the majority of patients would suggest the approaches currently provided by specialist services are worse than no intervention at all?
- are there any genuinely randomised controlled trials?
- still there is emphasis on the non uniquely diagnostic of feature fatigue, but failure to mention the one diagnostic feature likely to be uniquely identifying, PEM.
 
Andy said:
Here, we predominantly draw on evidence from clinical cohorts with a confirmed CFS diagnosis and evidence from general population studies of chronic debilitating fatigue, not necessarily formally assessed and diagnosed CFS.
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That reminded me...
MSEsperanza said:
When I looked for review registrations with Crawley as main or co-applicant a while ago, I also noticed their insconsistent use of inclusion / diagnostic criteria:
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From the quote in the first post :

Twenty-five years ago, clinicians and researchers did not believe that CFS existed in primary school children, little was known about the experience of children, and there were no randomised controlled trials testing treatment approaches.
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I do remember reading that doctors and surgeons didn't believe that babies and small children could feel pain, so they operated on them without anaesthetic and often refused to provide pain relief after surgeries :

https://www.nytimes.com/1987/12/17/...hout-anesthesia-went-unchallenged-832387.html

I also remember being told by doctors and my parents that children couldn't be depressed.
 
Twenty-five years ago, clinicians and researchers did not believe that CFS existed in primary school children, little was known about the experience of children, and there were no randomised controlled trials testing treatment approaches.
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They do not mention that 35 years ago research was being done into the biological basis of ME.
 
Over the lifetime of Clinical Child Psychology and Psychiatry, there has been considerable progress in understanding the epidemiology of Chronic Fatigue Syndrome (CFS), also known as myalgic encephalomyelitis (ME) and some progress in testing treatment approaches
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Laughably and demonstrably false. The only small bits of progress were done by others or the patient community fighting these self-serving jerks.

Failures. These people are failures.
 
dave30th said:
Loades, Chalder, Crawley...A trifecta! I haven't heard of the last author.
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A young clinical psychologist at UCL, which generally matches Bath for level of appalling tretment of youngsters with ME and their families.
This training day was held in Nov 2018 and features her.
https://madeinheene.hee.nhs.uk/Portals/16/school of paediatrics/CFS course timetable november 2018 final PDF.pdf

Witnessing outsider witnessing: "A reciprocal witnessing workshop with young people reclaiming their lives back from pain and fatigue" Professor Deborah Christie, Professor of Paediatric and Adolescent Psychology Dr Halina Flannery, Clinical Psychologist

Have no idea what the title of the above workshop means.

Dr Lee Hudson has since moved away from this team, which is a shame as it seems as though one was one of the more reasonable climicians.
He and others had been told to no longer provide letters re benefits/disability for patients.
Presumably this was because they were going to get better.
 
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Other promising approaches have been developed, most of which incorporate some principles of CBT and draw on other therapeutic approaches. One such approach called the Lightning Process, based on Neurolinguistic Programming (NLP), when offered in addition to treatment as usual (TAU), was more clinically and cost effective compared to TAU alone (Crawley et al., 2017). A pilot trial of physical exercise, which compared two variations (aerobic and resistance training), within a multicomponent inpatient programme (including physiotherapy, occupational therapy and psychological therapy), found that both variations led to improvements in quality of life, but only aerobic training decreased fatigue severity (Gordon et al., 2010). Music therapy has been combined with CBT and has been found to be feasible and acceptable, with indications of favourable out-comes in adolescents with postinfectious chronic fatigue (Malik et al., 2020).
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Crawley's SMILE and Wyller's Music Therapy trials were such great advancements. So long as you ignore their prespecified primary outcomes.

Academia is such a joke.
 
Twenty-five years ago, clinicians and researchers did not believe that CFS existed in primary school children, little was known about the experience of children, and there were no randomised controlled trials testing treatment approaches. In this review, major developments in epidemiology, knowledge about clinical presentations and correlates, impact of CFS and treatment approaches will be highlighted.

We are clinicians and researchers working in specialist CFS services in the United Kingdom.
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You know, Medicine is not an exact science, but we're learning all the time. Why, just fifty years ago we would have thought that your daughter's illness was brought on by demonic possession or witchcraft - - but nowadays we know that Isabelle is suffering from an imbalance of bodily humors, perhaps caused by a toad or small dwarf living in her stomach.

-Theodoric of York, Medieval Barber - 1306 A.D.
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Trial By Error: Professors Chalder and Crawley Join Forces to Push CBT for Kids
On December 10th, the journal Clinical Child Psychology and Psychiatry published an article called “Paediatric chronic fatigue syndrome: 25 year perspective.” Two of the four authors—Professor Trudie Chalder of King’s College London and Professor Esther Crawley of Bristol University—have long been leaders in the field. In particular, the article highlights CBT as an effective intervention. It cites some of the research that NICE has assessed as yielding only “low” or “very low” quality evidence.
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https://www.virology.ws/2020/12/16/...and-crawley-join-forces-to-push-cbt-for-kids/
 
Trial By Error/ David Tuller on the Lightning Process study paper that the article refers to as providing evidence for “promising” interventions with CBT elements:

Archives of Disease in Childhood would presumably have rejected the manuscript had the investigators been honest in how they described their research. Nevertheless, the journal white-washed this misbehavior after-the-fact with its very lengthy correction—a decision that many besides me found disturbing. In fact, the NICE draft specifically recommended against the Lightning Process, with the research review rating the quality of all the evidence from Professor Crawley’s study as “low” or “very low.”
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It maybe is difficult for the editors of the Archives of Disease in Childhood -- a BMJ journal--, to reject or withdraw a paper authored by someone who is on the editorial board of another BMJ pediatric journal, the BMJ Paediatrics Open.

https://bmjpaedsopen.bmj.com/pages/editorial-board/

Also, perhaps someone needs to count Esther Crawley's papers published in the Archives of Disease in Childhood. It seems to me she has been one of their most busiest authors for quite a while.
 
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