Hannah Rapley thesis incl. staff’s experience & knowledge of fabricated or induced illness within a paediatric chronic fatigue setting

https://ethos.bl.uk/OrderDetails.do?did=1&uin=uk.bl.ethos.760921

 

Ugh!

 

Does this follow on from / is related to the " safeguarding" conference? Seems a very similar content.

There is now a body of " research" being produced which needs to be carefully and systematically reveiwed, and where appropriate, seriousky debunked.

FII may have curious concentrations of location , which might change as reach extends.

This is critical within the 2 year NICE review period.

The " go- to" of CBT needs to be challenged. It simply is not effective for too many kids, moreover it makes them feel like shit if it dosn' t.

Given the overlap with autism ( where CBT can be disastrous) , there may be other therapies of better efficacy for those who need support.

In the other place @Hip had some posts re anxiety and supplementation which make sense in the context of broken metabollic paths. This might be something worth study.

 

At least the author appears to be aware that no conclusions can be drawn from her observations - or in fact from anybody else's observations.

The message seems to be that we have no convincing evidence that there is any specific active ingredient to 'CBT'. That seems to be quite an important and helpful conclusion.

 

I would take a more charitable view of that sentence. There is such a thing as a paediatric chronic fatigue setting - all the children presenting with illness involving fatigue. I don't now what the rest of the this says but this looks like a way of being careful to stick to facts rather than presumptions. Fabricated illness would not be CFS or ME, but it would appear in the clinical context if it involved fatigue.

 

Like, in general? Evidence of what?

So the evidence base is "growing" but it shows no conclusions. Won't stop them from suggesting their own conclusions but it does seem to validate the fact that it's entirely useless since a growing evidence base (of something, unclear what) shows no useful conclusions, which early research showed as well. Fairly consistent over several decades.

Then from "chronic fatigue" to self-harm. What does two have anything to do with one another?

Get those people straws as Christmas gifts, they love to grasp for them.

 

@Tilly . Perhaps you would like to elaborate on the FII aspect, as it may be something that is not appreciated?

It' s a bit like CBT for ME in both its underlying tenets, and its universal applicability.

Edit spelling

 

@Brian Hughes Is this any use to you?

 

They are now looking at EDS ME and CF or CFS as FII with one expert witness just using medical history regardless of diagnosis, if fatigue is on there it counts.

The way FII is accused now is on the grounds of potential emotional harm. As there are not bio markers or proof that children are harmed by movement or attending school then the mother is at risk of being accused. They are running courses with the RCPCH to teach paediatrics to be able to be a witness in court.

I would like to think that they are trying to be careful and stick to facts but reading many papers it would seem open ended enough to be able to insinuate and many mothers are getting trapped with this.

 

I just replied to Jonathan with how it FII seems to be being rolled out

We are seeing an increase in mothers being accused and questioned about how they see their child's illness with a view to the risk of emotional harm as the reason for taking the child away from the mother. So now we do not have to harm our children just that it may be a possibility. There is now forced adoption that was brought in last year.

 

Here is another research paper just released and disappointingly was From Sarah Jannett Knights

https://www.frontiersin.org/article...YklPjFj1B4KnK3K0j0KLbyRCZvav4w3gJ1QOAT6Q4n5UE


What I find shocking is that there is no mention of PEM and how this has a huge impact on school. No matter how much support you give a child if they are incapable of physical or cognitive function, neither were measured.

Crawley is mentioned and so is Wessley and if I was cynical about it I would say this is to give credibility to them both so that they may use their work with NICE.

What does it say about ME/CFS or anything really is zilch. In fact there is a direct mention to pain not being a problem:

The relationships between illness factors (e.g., fatigue severity), emotional symptoms, and school functioning in CFS have seldom been a focus of research. In a large sample of patients with CFS, Crawley and Sterne (13) found that children with better physical functioning were more likely to attend school. However, there was no evidence that gender, age, illness duration, anxiety, depression, or pain were associated with school attendance.

On that statement I would ask who were they studying and why? Low take up Oh and 101 other things.

 

Not sure as Jane is not well and there is only so much a small organisation can do. We need to tackle the research behind it all Dr Glaser is the one running seminars on how to accuse parent with the help of the police based on this research. Christopher Bass has done a few papers I think.

https://www.researchgate.net/profil...fabricated-or-induced-illness-in-children.pdf

The biggest problem is that if a Dr does not believe in ME EDS POTS then this research will just convince them that FII is the way to go and that it is simply under reported.

 

Thanks @Tilly
I suspected a tranche of papers starting at end of last year onwards to retain and reinforce narrative/ control/ reputations.
These need to be dissected and appropriately critiqued by science and charities
Where are @Action for M.E. and MEA @Russell Fleming and ME Action @EspeMor

From papers i have read over past couple of years it us very clear that there is little knowledge of what ME is in children, what key aspects are and every conflation is played to bolster stats.

It is a very dangerous game, and for those who cannot/ do not question things or cannot read a scientific paper, the power dichotomy is very worrying.

 

It is going to be a very hard year and the family courts throw out defence for the mother. I am at the family court with a mother next week harrowing is not the word. They are trying to keep them secret and they gag the mother with court orders even if they are innocent.

 

Knowing other mums who have been threatened with / through such processes, thank you @Tilly for all you do.

Linking to another topic re male/ female differences in advocacy this is a strange area in that FII seems to be targeted at females .

Must be those hysterical tendencies, but perhaps highlights why advocacy and direct engagement may be more difficult for some.

 

Not only hysterical tendencies but also manipulative which lets the husbands off the hook. It also has something to do with the fact most fathers find it hard to believe professionals could get it so wrong and their wife's could be right.

 

From my inbox ( also posted on " call for tenders..." thread
https://www.openforumevents.co.uk/e..._medium=email&utm_campaign=OFE+2+SGC+8.4.2019

More abuse orientated. I am not familiar with speakers.
This is a " growth area"