Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery - Harland, Crawley et al 2019.

[rogerblack]

https://bmjpaedsopen.bmj.com/content/3/1/e000525.full Full text is open.

Abstract
Objectives Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is common in children and adolescents; however, little is known about how we should define recovery. This study aims to explore perceptions of recovery held by paediatric patients with CFS/ME and their parents.<snip>
Conclusion Some parents and children struggle to define what would constitute complete recovery. However, signs of recovery were more easily identifiable. Definitions of recovery went far beyond symptom reduction and were focused towards rebuilding lives.

Absence of ‘payback’
As well as returning to pre-morbid functioning, children and parents felt that increasing activities should not result in payback (the increase in symptoms following activity) in order for them to be considered recovered.

I think I’d know if like, I went out and did something, I didn’t get payback for it, I think that one, I’d know that I was like really starting to recover. (Child-age-13)

Similarly, suggestions that recovery would be signified by an increase in activity levels to match those of the children’s peers, reflects the research in the adult CFS/ME population relating to the normalisation of function. However, this is difficult to define for the same reasons as in the adult population (wide variation for different ages and the presence of comorbid health problems).

I find it depressing that 'return to pre-morbid condition' is not strongly endorsed. This is pretty damn clear. Yes, there are problems, and athletes returning to 'normal' person activity might not be quite recovered, but for a population average, SF36 or whatever metric needs to be used. For a large trial, there are no problems, as outliers up and outliers down should cancel mostly.

It is also a real shame that there is no longitudinal followup.
Sure, this trial obviously couldn't have followup as the interviews were done recently.
For example
Chronic fatigue syndrome in children aged 11 years old and younger.was collecting data around 2005, and the median age would now be 29 or so. Followup from PACE would average 50yo.

I looked around to see if this was posted, and could find the similar in concept but different paper also by Crawley et al.
Developing and pretesting a new patient reported outcome measure for paediatric cfs me cognitive interviews with children.

 

[MEMarge]

How on earth can they say this:

Conclusion Some parents and children "struggle to define what would constitute complete recovery." However, signs of recovery were more easily identifiable. Definitions of recovery went far beyond symptom reduction and were focused towards rebuilding lives.


I don't know anyone with ME or other illnesses who would define complete recovery as anything other than a return to full (or pre-illness) health.

Yes, anything that improves level of activity/reduction in pain etc would help, but it's not recovery except in the view of the Psychs!

 

[MEMarge]

Looks like another waste of ?PhD funding.

There is also another paper under review...

 

[Esther12]

Similarly, suggestions that recovery would be signified by an increase in activity levels to match those of the children’s peers, reflects the research in the adult CFS/ME population relating to the normalisation of function. However, this is difficult to define for the same reasons as in the adult population (wide variation for different ages and the presence of comorbid health problems).12

Hmmm... reference 12 is to the short Matthees piece pointing out the spin and misrepresentation seen in PACE's recover claims. The 'difficulty' there seemed to be that researchers were spinning their results. The other problems mentioned can be quite easily mitigated.

A shame that they didn't ask the participants about Crawley's claims that PACE showed a recovery rate of 30-40% for CBT and GET - I suspect the average child would be able to see through that BS.

Imagine being a PhD student looking at how to define recovery in CFS, with Crawley as your supervisor. Doomed.

 

[rvallee]

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is common in children and adolescents; however, little is known about how we should define recovery.

Esther Crawley is an author, sometimes lead, on several papers and researcher on several trials that boasted of people "recovering" from what she calls CFS. This is completely absurd, this single paragraph should disqualify her entire career. For the PACE trial, Richard Horton, editor of The Lancet who somehow participated in promoting this trial, boasted of "strict criterion for recovery", which Crawley, as PACE author, has endorsed fully.

Researchers who don't know the first thing about the illness they claim to be "top researchers" in need to go out in the woods and live out their lives in quiet reflection over being this incompetent. Patients know. Patients have been saying it for decades. It is not complicated, or complex, or vague. It is return to pre-morbid functioning. The premise being "there is no disease" means there should be no limitations and every physiological test should be in line with the rest of healthy adults or children.

Perception is irrelevant. All those things are measurable, yet that never happens in BPS research. Always thoughts and feeling and biased questionnaires of little to no relevance to the illness. Doing step 1 after having spent years at the very last step, promoting flawed treatments as leading to full recovery, is not commendable, it is absurdly incompetent.

And fig off with your "payback". PEM is hard to define but it is literally the hallmark symptom and pretending it is something else is just yet another layer of absurd incompetence. The name sucks and is misleading but we're stuck with it and payback isn't any better so stop it with adding confusion.

Definitions of recovery went far beyond symptom reduction and were focused towards rebuilding lives.

This is ridiculous to the point of being idiotic and shows Crawley has no clue about anything related to this disease. The symptoms are the only obstacle and they are responsible for having anything to rebuild at all. For all practical matters it is this research, by Crawley and her colleagues, that destroyed those lives, by impairing progress and spreading misinformation, preventing the creation of competent services and building genuine research expertise, all leading to immense stigma and even ostracization, sometimes to death.

This suggests that it is vital to involve children in developing any new PROM for paediatric CFS/ME.20 Use of a patient-generated index in which patients select the most important areas of their lives and rate their health in those areas may be more appropriate.

This is the only competent part of this study and it is exactly what the ME community has explained for decades and has been rejected by people like Crawley and her colleagues who rejected every bit of substance from patient testimony. Just get out of the way and we will get this done, Crawley is beyond superfluous to the process, she is an obstacle and has always been.

Only problem is the only competent part of this study is immediately contradicted in the same paragraph by suggesting the most possibly incompetent method of having the researchers defining the questions they want to answer, which is how the BPS approach has managed to incompetently fail millions with devastating consequences:

Research studies should consider using questions where patients self-define recovery (eg, ‘I have recovered’ or ‘I have nearly recovered’). Clinicians should be aware of the differences between their own goals for recovery and those of parents and children.

Recording answers to incompetent questions is not how any of this should work. Those definitions right here are a great example of how the focus of this research has always been to entice desired answers to their own questions, rather than figuring out solutions to the problem.

It's Crawley's choice to waste her career on garbage but this choice should not continue to impair the progress of science. Just go away and leave this to people who know what they're going and we'll fix the disaster you created.

 

[DokaGirl]

As @rvallee says, the BPS model assumes no disease re ME ("cfs"). Why then are they unsure how to define recovery? It should be a complete return to pre-morbid health.

However, the fly in the ointment as far as the BPS model is concerned are the patient's
beliefs; "do they really want to get better." This could be one reason why they
equivocate. I would answer, of course, we want to get better! You try living with this disease and see how you like it!

 

[JemPD]

Esther Crawley is an author, sometimes lead, on several papers and researcher on several trials that boasted of people "recovering" from what she calls CFS. This is completely absurd, this single paragraph should disqualify her entire caree

This is ridiculous to the point of being idiotic and shows Crawley has no clue about anything related to this disease. The symptoms are the only obstacle and they are responsible for having anything to rebuild at all. For all practical matters it is this research, by Crawley and her colleagues, that destroyed those lives, by impairing progress and spreading misinformation, preventing the creation of competent services and building genuine research expertise, all leading to immense stigma and even ostracization, sometimes to death.

As @rvallee says, the BPS model assumes no disease re ME ("cfs"). Why then are they unsure how to define recovery? It should be a complete return to pre-morbid health.

However, the fly in the ointment as far as the BPS model is concerned are the patient's
beliefs; "do they really want to get better." This could be one reason why they
equivocate. I would answer, of course, we want to get better! You try living with this disease and see how you like it!

this

 

[Esther12]

Esther Crawley is an author, sometimes lead, on several papers and researcher on several trials that boasted of people "recovering" from what she calls CFS. This is completely absurd, this single paragraph should disqualify her entire career. For the PACE trial, Richard Horton, editor of The Lancet who somehow participated in promoting this trial, boasted of "strict criterion for recovery", which Crawley, as PACE author, has endorsed fully.

I'm only just skimming this, but thought I'd say that Crawley isn't an author on the PACE trial and clarify that it was a Lancet commentary from Knoop and Bleijenberg that made the BS "strict criterion for recovery" claim. Under Horton the Lancet has failed to correct it, but the claim wasn't made in a Horton c editorial: https://www.ncbi.nlm.nih.gov/pubmed/21334060

This is ridiculous to the point of being idiotic and shows Crawley has no clue about anything related to this disease. The symptoms are the only obstacle and they are responsible for having anything to rebuild at all.

I took that to mean 'beyond symptom reduction', as in a mere improvement in symptoms is not sufficient to be classed as 'recovered'. This is so obvious that it can be difficult to believe this is what is being said, but there have been attempts to present a mere reduction in symptoms, while symptoms are still on-going, as indicating 'recovery'.

 

[Amw66]

We seem to be going through a historical revisionist period in UK.

Having redefined poverty many times to provide compliant/ improving spin on figures it should not come as any surprise that recovery is seen as similarly flexible.

How on earth would so many psychological treatments work if recovery meant actual full recovery, and not some "degree" of recovery.

Once the qualifying criteria is redefined as an " almost" , it can be revisited .

 

[Amw66]

Given that Sonya Chowdery has , I believe, commented that recovery means full recovery it would be good if @Action for M.E. would comment on this.
A tweet/ facebook page comment could be effective.

 

[Sly Saint]

while they are trying to work out what 'recovery' is, maybe they should also investigate what constitutes 'harm'(?)