A systematic review to identify the definitions of recovery for paediatric CFS or ME (Moore et al.)

[Dolphin]

Conference presentation so there's just an abstract which is copied in full below.
Esther Crawley is one of the authors.

http://adc.bmj.com/content/100/Suppl_3/A146.3.abstract?ct=ct

Arch Dis Child 2015;100:A146-A147 doi:10.1136/archdischild-2015-308599.314

• British Society for Paediatric and Adolescent Rheumatology and British Society of Paediatric Gastroenterology, Hepatology and Nutrition

G358 A systematic review to identify the definitions of recovery for paediatric patients with chronic fatigue syndrome (cfs) or myalgic encephalomyelitis (me) used in studies since 1994

1. Y Moore,
2. NME Anderson,
3. E Crawley

+Author Affiliations

1. School of Social and Community Medicine, University of Bristol, Bristol, UK

Abstract
Aims

To describe how recovery from paediatric CFS/ME is defined, how many children recover and how long it takes.

Methods

We conducted detailed literature searches of MEDLINE, EMBASE, PsycInfo and the Cochrane library, searched trial registration sites, contacted authors if results have not been published and hand searched reference lists.

Three categories of search terms were used; paediatric, CFS/ME and recovery.

Inclusion criteria

Randomised controlled trials or observational studies of participants <19 years old with a diagnosis of CFS/ME, related to a Western Health Care system, some measure of recovery (partial or full) reported and the time taken to reach it.

Results

21 papers were identified.

The study populations ranged from 1 to 64 participants, their duration of illness ranged from 3 months to 7 years between studies and also showed great variety within each study.

Some studies used a single measurement outcome for recovery, others measured several and some integrated multiple outcomes to formulate one value for recovery.

The recovery rate ranged from 25–100% in those accessing treatment and 4.5–100% in those without specialist care.

School attendance was the most common measurement outcome (n = 11), of which 4 of these combined this with at least one other measure.

7 studies measured physical ability as an outcome, 8 used fatigue and 9 measured a global improvement that was either self-rated or qualitatively assessed by an investigator.

2 studies described recovery as no longer fulfilling the diagnostic criteria.

Conclusion

Recovery rates are relatively high in children accessing specialist treatment however, the discrepancies between the measurement outcomes, makes interpretation of recovery rates difficult.

 

[DaiWelsh]

with a diagnosis of CFS/ME.....duration of illness from 3 months​

I thought all criteria required > 6 months illness?

Oh and you have to love this:

The recovery rate ranged from 25–100% in those accessing treatment and 4.5–100% in those without specialist care.​

Which apparently means that

Recovery rates are relatively high in children accessing specialist treatment​

To me (assuming that the writing is clumsy and "accessing treatment" is he opposite of "without specialist care") it looks like recovery rates were relatively high for everyone, but of course that would not support lots of expensive specialists

 

[Denise]

(The pediatric definition by Jason (2006?) used 3 months in its criteria.)

How do the authors define recovery? I'd like more detail than what is in the abstract.
How long were they patients followed (to make sure it wasn't a remission)?


And many thanks @Dolphin for posting this. Wish we could see the text of the whole presentation.

 

[Dolphin]

Making a presentation like that doesn't preclude then writing and publishing a paper. There's a good chance that they will go and write a paper on this (or indeed they may already have written a paper).

 

[user9876]

I wonder if the 3 month threshold has a huge effect on the recovery stats in that it may well catch kids with glandular fever or similar temporary post viral effects.

They talk about partial recovery but I'm not sure that concept even makes sense. But then Crawley wrote a briefing paper claiming a 30-40% (not sure if my memory is correct here) from the PACE trial (basically taking the PACE 'normal' as recovered). So I'm I suspect the rigour in reviewing papers around recovery would be sufficient.

This still contradicts the figures of 97% recovery that Crawley was telling her patients (and may still be!). But then she is happy changing a diagnosis from CFS to a dissociative disorder (i.e. pervasive refusal syndrome) when a child has not got better. Claiming that she has cured them of CFS (because she couldn't have got the initial diagnosis wrong) and they now have a dissociative disorder due to the stress of being ill.