General news about Fabricated and Induced Illness syndrome (FII)

bobbler said:
That sounds high enough it's systematic,

and I'll be brave and suggest I'd suspect most of the other half might have been made because someone thought someone might make a complaint

is there some sort of belief, or actually truth in the system of complaints, that if they do it first then the complaint won't hold as much weight/risk?




So where did their figures come from? Is this another 'accidental' (not) copying of a fake / deliberately miscalculated stat then cited as much as they can until it becomes a truism - just like the FND '10%' one?

Will someone finally call out 'research' that is 'propaganda' when it either has no reserch, has no quality of methodology, or [deliberately] contains errors or misleads in the abstract vs what is in the results etc.

And are then used to undermine actual factual statistics.

"pathologises disagreement" is a polite term for something that I do think starts to need its own criminal code to be honest in future. Isn't it just about power? and someone having created a situation where it can be misappropriated?
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the pathetic response:

An Royal College of Paediatrics and Child Health spokesman said that when its guidance was last updated in 2021 it was conducted “via a multidisciplinary expert working group” .........The college is also “actively exploring options to ensure that the planned update to the guidance sufficiently captures a multidisciplinary approach”.
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Are they thick?
 
Moved discussion

Sean said:
I never said ME is FND,​

What about CFS? Is that FND?

Just so we are clear.
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and just to add belt and braces to it, this from Table 1 of the RCPCH ‘Fabricated or Induced Illness by Carers: A practical guide for paediatricians’ – last published in 2009. Updated February 2021 - is wrong then?

Medically Unexplained Symptoms (MUS) Definition
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The child’s symptoms, of which the child complains and which are genuinely experienced, are not fully explained by any known pathology but with likely underlying factors in the child (usually of a psychosocial nature), and the parents acknowledge this to be the case. The health professionals and parents work collaboratively to achieve evidence-based therapeutic work in the best interests of the child or young person.
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MUS can also be described as ‘functional disorders’ and are abnormal bodily sensations which cause pain and disability by affecting the normal functioning of the body. Synonyms Non-organic symptoms, Functional illness, Psychosomatic symptoms
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Amw66 said:
Yes. Find the MUPPETS presentation . Nicely nails it.
@Tilly
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Yes I remember that one well. The South West Paediatric Society and Crawley was to be the speaker. Didn't they apologize after a deluge of 'vexatious' complaints? . I noticed today that parents raising vexatious complaints to doctors is now an FII 'alerting sign' and that any one of the alerting signs triggers PP investigation. It's positively kafkaesque now.

Edit OMG - I've just another look at it.
 
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Amw66 said:
Yes. Find the MUPPETS presentation . Nicely nails it.
@Tilly
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@Maat
one of mine
forums.phoenixrising.me

DISCUSSION: Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

http://www.swpc.org.uk/Exeter2017SWPCProgramme.pdf South West Paediatric Club A Day with the MUPPETs (Medically Unexplained Physical, Psychological Symptoms) 15.30 Victor Neale Memorial Lecture: CFS/ME, what we know and research updates. Professor Esther Crawley, Bristol Children's Hospital...
forums.phoenixrising.me forums.phoenixrising.me
 
Maat said:
Yes I remember that one well. The South West Paediatric Society and Crawley was to be the speaker. Didn't they apologize after a deluge of 'vexatious' complaints? . I noticed today that parents raising vexatious complaints to doctors is now an FII 'alerting sign' and that any one of the alerting signs triggers PP investigation. It's positively kafkaesque now.

Edit OMG - I've just another look at it.
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Another look at the MUPPETS or the FII pathway? The thing is FII is set up like a protection for the medical profession and a gatekeeping exercise. There does not have to evidence and if accused they offer a bargaining option if you agree to the accusations, which are confusing and elaborate and would need a certain intelligence to combat, you can go into a research program that will allow you to keep your child. Those that believe that all doctors would do no harm and would be reasonable get hoodwinked into going for the program to show their innocence.
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Tilly said:
Another look at the MUPPETS or the FII pathway? The thing is FII is set up like a protection for the medical profession and a gatekeeping exercise. There does not have to evidence and if accused they offer a bargaining option if you agree to the accusations, which are confusing and elaborate and would need a certain intelligence to combat, you can go into a research program that will allow you to keep your child. Those that believe that all doctors would do no harm and would be reasonable get hoodwinked into going for the program to show their innocence.
View attachment 27796
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Thanks for that @Tilly

I don't want to derail this thread, and these posts should probably be removed to a more appropriate thread.

So would only comment that, if supported by evidence,

There does not have to evidence and if accused they offer a bargaining option if you agree to the accusations, which are confusing and elaborate and would need a certain intelligence to combat, you can go into a research program that will allow you to keep your child.
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I would argue that it negates any resemblance to informed consent from the parents or assent from the child and therefore goes against the GMC Guideline 1999 on the question of consent, all the way through to today's guideline.

It would be coercion and little more than what happens in criminal law, where a criminal enters into plea bargain, without any access to a hearing. It is disgusting!

It no doubt operates under the guise of 'in collaboration with' in the records.

It could also be argued that any subsequent research results based on such participants would be tainted. After all, if they have a legitimate reason to query the safety of the cyp in the first place, that should be prioritised over yet more research.
 
Maat said:
Thanks for that @Tilly

I don't want to derail this thread, and these posts should probably be removed to a more appropriate thread.

So would only comment that, if supported by evidence,


I would argue that it negates any resemblance to informed consent from the parents or assent from the child and therefore goes against the GMC Guideline 1999 on the question of consent, all the way through to today's guideline.

It would be coercion and little more than what happens in criminal law, where a criminal enters into plea bargain, without any access to a hearing. It is disgusting!

It no doubt operates under the guise of 'in collaboration with' in the records.

It could also be argued that any subsequent research results based on such participants would be tainted. After all, if they have a legitimate reason to query the safety of the cyp in the first place, that should be prioritised over yet more research.
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I am very guilty of derailing as everything intertwines and your arguments are solid and sound they just don't work for many reasons. Happy to discuss further and show why it does not work on a different thread, suffice to say that there is no collection of data or oversight for a reason.
 
Tilly said:
Yep, Government and all the rest
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mmm, I'll give this some more thought @Tilly

In the complaint I've been drafting concerning the Final Delivery Plan, under the cyp section, I deferred detailed complaint to those with personal experience and in depth knowledge of ongoing and existing problems in this area and that remains the case.

I'm assuming this would have been vociferously discussed during the Task and Finish Group which accounts for the fact it has been referred to the Law Commission. It would have also been raised during replies to the public consultation.

I limited my complaint in the section of cyp to the history and treatment of ME CFS CFS/ME and ME/CFS impacting on cyp and their families.

I have now included what I discovered during my research updating myself on guidelines in this area during the last 5 years. Of course, that only covers the situation up to the doors of the Court.

I'm making the complaint a public document once submitted, so I can't include anything beyond that and what's been disclosed in public media reporting.

I expect to receive an inadequate response to my complaint to the DHSC, in which case I'm hoping that an MP will refer it to the PHSO with a view to them investigating the entirety of the complaint against parliament, government departments, including the NHS. Whether they will or not is another hurdle.

I'm also not sure whether the PHSO has the power to look behind the Courts as Parliament and Courts are separate independent functions of the state. But they can definitely do something else. I'm at least 2 months away from the doors of the PHSO from when I submit the complaint.

I'll double check my thinking on a possible strategy to deal with this incomplete section in the complaint over the course of the next few weeks, and I'll get back to you, probably in a private message.
 
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JohnTheJack said:
Programme on fabricated or induced illness (FII) on at 11:00 am UK time. Will be on website and app after broadcast.

Trailer suggests includes reference to children with ME.

https://www.bbc.co.uk/programmes/m000
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This was an old program and one in which I was loosely involved in. Sadly those that were involved were disbanded but I do know individuals still involved with supporting parents/mothers who are targeted
 
SNT Gatchaman said:
Wider even than that awful context. It's how any parent and any child is viewed: as an unreliable witness and reporter of their own experiences. All countermanded by the unevidenced ideas of professionals who reckon they know what's going on.

Inevitably longitudinal studies are going to show the severe damage done to a generation of children. Eg just on the cardiovascular effects, let alone neurodevelopmental/accelerated neurodegenerative: Post-Acute Cardiovascular Outcomes of COVID-19 in Children and Adolescents: An EHR Cohort Study from the RECOVER Project (2024, Preprint: MedRxiv) —
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Longitudinal studies will only show the lived experence if they are recognised and data collected and the understanding of ME is known, this does not happen.

When I first started to talk about PEM no one was, yet PEM is crucial to understand and opens the eyes and minds to the situation of the lived experence.

I had to ask, I think it was 3 times about SNOMED codes in parliament before people started to talk about them. I then found that system 1 is separate and DRs don't use any coding for ME and no place logs the data and is why we did not know how many people had ME.

Since the questions in parliament Drs are beginning to use them, but how useful will that be if they are not seen as a whole picture and just used as a single entry. The data collected will give misleading information and once again the multitude of symptoms and comorbidities will be covered up.

Furthermore as with this; finding it hard to be polite here, just put in any expletives you wish and then you will understand some of what I feel about this :banghead:

They talk about triggers and not PEM and I just cant find any understanding what the wearable device they talk about does or measures. Don't get me started on the patient feedback, which seems from my perspective not the language of the patient community I know.

What do they mean multidisciplinary ? I cant find any other discipline in the group than rehab or get people back to work? There is a nod to disability but no logical understanding what the word means.

There was no recognition that most Drs would not look for POTS EDS hEDS MCAS autoimmune microclots or any parasite or ongoing infection markers so what was the point of this? There is no explanation I could find of how and what they looked for or test given.

I would see this as a smoke screen and to keep the status quo

Longitudinal studies will only help if the facts are put through rigours examination with ALL disciplines present. Until these issues are discussed in parliament and in all platforms and this lot taken to court (wishful thinking) we are going to see an increase in accusations of FII and lack of education of ME and PEM.
 
Maat said:
mmm, I'll give this some more thought @Tilly

In the complaint I've been drafting concerning the Final Delivery Plan, under the cyp section, I deferred detailed complaint to those with personal experience and in depth knowledge of ongoing and existing problems in this area and that remains the case.

I'm assuming this would have been vociferously discussed during the Task and Finish Group which accounts for the fact it has been referred to the Law Commission. It would have also been raised during replies to the public consultation.

I limited my complaint in the section of cyp to the history and treatment of ME CFS CFS/ME and ME/CFS impacting on cyp and their families.

I have now included what I discovered during my research updating myself on guidelines in this area during the last 5 years. Of course, that only covers the situation up to the doors of the Court.

I'm making the complaint a public document once submitted, so I can't include anything beyond that and what's been disclosed in public media reporting.

I expect to receive an inadequate response to my complaint to the DHSC, in which case I'm hoping that an MP will refer it to the PHSO with a view to them investigating the entirety of the complaint against parliament, government departments, including the NHS. Whether they will or not is another hurdle.

I'm also not sure whether the PHSO has the power to look behind the Courts as Parliament and Courts are separate independent functions of the state. But they can definitely do something else. I'm at least 2 months away from the doors of the PHSO from when I submit the complaint.

I'll double check my thinking on a possible strategy to deal with this incomplete section in the complaint over the course of the next few weeks, and I'll get back to you, probably in a private message.
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I did not know it had been referred to the Law Commission. Have you any links?

I did engage and participated in the in the NHS England gathering of information and I did not hold back on the reality of the situation.

I have written to the Family Courts when they were debating to make the family courts more open to the journalists so they would be aware of all the facts and cannot deny the issues or problems. Andy Bilson and Luke Clements have written a letter which would support any court action?

I wrote the Children's commissioner so all are aware and even though they have changed chairs etc there is no excuse for ignorance in the Law? So with that in mind I blogged my experence and logged most of the letter I wrote and the responses to NICE, Family Court, NHS England etc.

This is what I told them 1755508416763.png

I wrote this for all the parents, mostly mothers I have had been involved with and all those now going through the same; sorry don't have the words for what they endure. How many YP are taken with ME and PEM? How many foster or adoptive parents also find themselves in this predicament we don't know but we do know it goes on and their advocates are silenced by family courts.

Happy for you to contact me at any time.
 
Tilly said:
I did not know it had been referred to the Law Commission. Have you any links?

I did engage and participated in the in the NHS England gathering of information and I did not hold back on the reality of the situation.

I have written to the Family Courts when they were debating to make the family courts more open to the journalists so they would be aware of all the facts and cannot deny the issues or problems. Andy Bilson and Luke Clements have written a letter which would support any court action?

I wrote the Children's commissioner so all are aware and even though they have changed chairs etc there is no excuse for ignorance in the Law? So with that in mind I blogged my experence and logged most of the letter I wrote and the responses to NICE, Family Court, NHS England etc.

This is what I told them View attachment 27904

I wrote this for all the parents, mostly mothers I have had been involved with and all those now going through the same; sorry don't have the words for what they endure. How many YP are taken with ME and PEM? How many foster or adoptive parents also find themselves in this predicament we don't know but we do know it goes on and their advocates are silenced by family courts.

Happy for you to contact me at any time.
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Thanks for compiling this for me Tilly. I'll include it as is written because the impact comes through in your words.


Tilly said:
Also look at her research, I think FITnetNHS trial shows how parents can be blamed if no improvement
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I've been following the situation with cyp research for 10 years, SMILE, MAGENTA, FITnet-NHS, etc, but only the FII and FDIA from a distance as that's an area I have no direct experience with.

Tilly said:
I did not know it had been referred to the Law Commission. Have you any links?
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It's in the ME/CFS Final Delivery Plan

www.gov.uk

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the final delivery plan

www.gov.uk www.gov.uk

The IDP agreed that:

  • the Law Commission will review existing social care legislation relating to disabled children, to improve clarity for families about the support that they are legally entitled to, ensuring that local authorities know what they are expected to provide, and families know how to access support
  • DHSC will engage stakeholders to discuss timely diagnosis and support for children who have ME/CFS and their families as well as best practice in relation to safeguarding responsibilities
It should be noted that, as set out under ‘Attitudes and education of professionals’, DfE also committed to encourage SEND and medical condition organisations to:

  • signpost the NHS England e-learning on ME/CFS on their websites
  • update the guidance on education for children with health needs who cannot attend school
  • share guidance developed by Action for ME with wider children’s social care professionals
  • signpost NHS England’s e-learning on ME/CFS to providers
In the consultation, 98.5% of respondents selected ‘strongly agree’ or ‘agree’ to the contents outlined in the ‘Support for children and young people with ME/CFS’ section of the IDP. However, respondents made suggestions on where we could improve actions, particularly regarding:

  • improving awareness to prevent harm from false accusation of fabricated illness
  • adaptations to physical environments and integration of pacing to support education
  • the pressure and harm of physical attendance
  • the need for education and recognition of ME/CFS as a disability to improve access to support in schools
  • the difficulty accessing timely support for children
  • financial pressures for families and support for adapting education
As such, in addition to the actions agreed in the IDP, we have agreed that DfE will embed ME/CFS-specific considerations into its broader approach to education, including by sharing relevant training, resources and guidance with alternative provision settings and local authorities. In addition, DfE will explore opportunities to raise awareness and promote understanding of ME/CFS across the education sector. This includes engaging with stakeholders, disseminating best practice, and ensuring that guidance and communications reflect the needs of children with complex medical conditions.
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In 2023, after the the public consultation concluded, I started collating evidence I had already gathered generally since 2014. So even getting to this point has taken me almost 2 years. So this additional insight into the reality of cyp and their families, and others.

Don't worry I'll definitely keep in contact with you, and thanks again.
 
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