Recovery from chronic fatigue syndrome: a systematic review—heterogeneity of definition limits study comparison, 2021, Moore et al (Esther Crawley)

Recovery from chronic fatigue syndrome: a systematic review—heterogeneity of definition limits study comparison

1. Yasmin Moore
2. Teona Serafimova
3. Nina Anderson
4. Hayley King
5. Alison Richards
6. Amberly Brigden
7. Parisa Sinai
8. Julian Higgins
9. Caitlin Ascough
10. Philippa Clery
11. Esther M Crawley

Open access

Abstract
Background Paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a common illness with a major impact on quality of life. Recovery is poorly understood. Our aim was to describe definitions of recovery in paediatric CFS/ME, the rate of recovery and the time to recovery.

Methods This systematic review included a detailed search of MEDLINE, EMBASE, PsycInfo and Cochrane Library between 1994 and July 2018. Inclusion criteria were (1) clinical trials and observational studies, (2) participants aged <19 years with CFS/ME, (3) conducted in Western Healthcare systems and (4) studies including a measure of recovery and time taken to recover.

Results Twelve papers (10 studies) were identified, involving 826 patients (range 23–135). Recovery rates were highly varied, ranging between 4.5% and 83%.

Eleven distinct definitions of recovery were used; six were composite outcomes while five used unidimensional outcomes. Outcome measures used to define recovery were highly heterogeneous. School attendance (n=8), fatigue (n=6) and physical functioning (n=4) were the most common outcomes included in definition of recovery. Only five definitions included a personal measure of recovery.

Implications Definitions of recovery are highly variable, likely secondary to differences in study design, outcomes used, follow-up and study populations. Heterogeneous definitions of recovery limit meaningful comparison between studies, highlighting the need for a consensus definition going forward. Recovery is probably best defined from the child’s own perspective with a single self-reported measure. If composite measures are used for research, there should be agreement on the core outcome set used.


https://adc.bmj.com/content/early/2021/04/11/archdischild-2020-320196

 

Follows on from previous study ( I think there is a thread) - opens the way for ACT and recovery to be a more psych based concept.
With power asymmetry ( which clinicians and teachers do not really seem to understand st all ) this will not be too difficult to achieve.

I would like to bet that for any child / young person that recovery means the ability to go back to their previous health and abilities.

It would be an idea for charities to do a survey on this and kick it jnto the long grass before it gains too much traction.
Both Tymes and AfME have potential for direct contact (Afme have online potential for this)

I could of course be wrong. However from forums of which I am a member , I suspect not

ETA charities sentence

 

Why doesn't it surprise me that Julian Higgins is one of the coauthors?

See https://www.s4me.info/threads/rob-2...in-randomised-trials-2019-sterne-et-al.11025/

I really need a forum break.

 

Children can be under a lot of pressure to deny or downplay their illness to make various adults happy.

 

As a child I definitely did. Both my parents worked so me getting sick really.took it's toll on their finances. It also meant I was stuck under a beady eye when I had plenty of mischief to be making.

No.
"Recovery" is when the person, be they adult or child, can do what a healthy adult or child of a similar age can do.

"Effectively treated" might mean the adult or child can do as much as can be reasonably expected with the treatments available. That might be a quality of life improvement right up to "Recovered" level of function but not cured.

A single self reported measure of any improvement is "making the best of it". Any with decent mental health will do this eventually. It's called adjusting and, contrary to BPSers everywhere, is something everyone automatically does with time.

Setting the measure of success of treatment as the person adjusting and finding something meaningful is to set the bar so.low even an ant would struggle to limbo under it.

They should be ashamed.

 

And yet here we are, these people are routinely "teaching" about something they sometimes have to admit nobody knows about. Hasn't stopped them from pretending they know all about it, as we can see with prior pathetic attempts at defining it in a meaningless way simply because if they defined it correctly none of their junk would make sense.

Although it's really not that hard or complex: free of illness, that's it, that's what it always means. Less than that? Perhaps remission, definitely not recovery. Maybe something like "impaired or limited but not recovered". "I had the flu" "Do you still have symptoms?" No=recovery, yes=not recovery. That's the gist of it with a standard course of the flu, food poisoning, an injury or any other illness in existence.

The standard for all medical language to be ICU setting is really growing into mass silliness, when a common word is used to mean something different all because of very specific circumstances that a small % of cases will satisfy.

I assume it wasn't missed by others that the criteria basically amount to: stuff Esther Crawley worked on. Again grading their own work. I understand it makes it infinitely easy to do their day job and get a wage out of it, they basically don't even have to put in any work at all, but it's massively disastrous for everyone else.

 

Words fail me.

 

"Recovery is poorly understood".

No, stop right there. Recovery is not poorly understood, except by those who strive to make out it is something that suits their perverted science!

The disease mechanisms might be poorly understood, but what is meant by recovery is not.

 

That's OK, they intend to put their words in your mouth anyway.