On BBC Morning there was a mum and daughter talking about FII

https://www.bbc.co.uk/sounds/play/live:bbc_radio_five_live
Some of our children have hyper mobility. On BBC Morning there was a mum and daughter talking about FII and mixups that happened. They are doing an interview 5 minutes in.

Today on BBC Radio 5 live, every parent's worst nightmare......been there and have teeshirt. At 11 am


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There was a short report on BBC lunchtime TV news today by a reporter (Adrian ??- radio 5) talking about FII.

He explained what it is, and named autism and Ehlers Danlos as conditions it might be associated with. No mention of ME.

Perhaps someone might like to contact Adrian ( sorry no surname- info had been given before topic was clear) and introduce him to Dr Speight or Tymes Trust.

 

Just listened to this:
https://www.bbc.co.uk/programmes/m00030dr

The doctor who features throughout is Dr Danya Glaser
https://www.ucl.ac.uk/psychoanalysis/people/danya-glaser

Interviews with various parents falsely accused.
Even when cleared, FII is still on the medical notes and so gets picked up time and again whenever the parents seek medical help for child.
Most often FII proceedings are instigated following reports from mainly paediatricians but also teachers, GPs and social workers.
Also often reported as a result of a complaint made by the parent re treatment.

around 30.57 on the recording mentions M.E.

Fiightback; group helping some 600 cases. 400% increase of cases in the last five years; thus far 70% of cases have been cleared of FII accusations.

https://www.fiightback.co.uk/

Last parent interviewed was accused of FII (Daughter eventually diagnosed with EDS). Report based on the wrong notes; authorities denied this but eventually it turned out to be true, that they had mixed up the daughters notes with another patient. Meanwhile the girl had been sent to the psychiatric unit at a hospital for 10 months.
Mother also accused of 'Doctor shopping' which is also apparently a 'sign' of FII; namely trying to get to see a different doctor.

 

The more I listen to everyone involved in this business the more I regret just how much of a mess up (insert obscenity here if you so wish) my colleagues have made of this.

It is quite clear to me that you will need to doctor shop to find someone who has a constructive approach to ME.

On the other hand doctor shopping is very likely to bring people into contact with doctors who provide plausible 'biomedical' explanations that are just as bogus as FII or MUS or whatever.

I cannot judge the last case in the BBC programme. However, I am pretty sure that 95% of people given the diagnosis of EDS in the last ten years do not have a genetic connective tissue disorder responsible for their illness. They have an illness and they may be hypermobile but the two having nothing to do with each other. As many members will know, I have been close to the evolution of the 'EDS' story in the UK for forty years, so have some basis for saying this. (E.g. I was an author on one of the first papers purporting to show cardiac involvement in 'hypermobility EDS' and was later asked to take over the most prominent hypermobility clinic in the UK, but declined.)

So the situation is complicated. I suspect part of the problem is that parents want an explanation for a child's illness when often there is none - we simply do not know what is the cause. ME as a name has the advantage that it makes no claims about cause. EDS does and probably wrongly. Doctors confuse the natural desire for an explanation for 'looking for something that isn't real' or inventing an illness for the child. If anyone is fabricating illness in these cases it is the private doctor, or empire-building academic, who makes a nice living out of selling phoney diagnoses.

The situation is then compounded by the fact that the psychiatrists appear to have no understanding of how harmful inpatient care is. Not only do they have no solution to the parents' quest but make the child far more miserable than they would have been.

I think it may also be important to recognise that there may genuinely be parents whose attitude to the child's illness has a negative impact. But I think this is likely to be very rare and something quite different from the natural vigilance of parents looking for answers.

Above all what is needed is clarity about the facts. There is no doubt that there is a pattern of illness that can be called ME. There is pretty little evidence for there being real illnesses with names like EDS, MCAS, or even POTS that are responsible for chronic disability of the sort people are familiar with here.

 

Not directly in relation to FII, but a physician once told me they never make mistakes. This was in response to my politely pointing out they had made a mistake.

Re the FII scenario - it seems beyond a nightmare. To be suspect because you have a clean house, and a brand new fridge with none of your kid's drawings on it, is completely ridiculous. Or to be suspect because you are intelligent, do your own research, and are genuinely loving and concerned about your children is kafkaesque.

The policy of it's all for the kids has missed the mark. As the radio interviewer said, it's a package deal. Persecution and prosecution of the parents, especially when parents are not found to be at fault, damages not only the moms and dad's, but their children.

Blending someone else's medical file with another person's and at least partially on that basis incarcerating them in a psychiatric institution is shocking. No apology afterwards is outrageous!

 

For those of us with a limit on our ability to go through links, Please define FII?

ETA: Oh, is it another MUS-like acronym? (Hate acronyms)
EATA: Wikipedia disambiguation for FII

• Fabricated or induced illness, also known as Münchausen syndrome by proxy

 

I consider my journey as a parent of a child with ME symptomolgy, is more akin to being in a tug of war with differing medical opinions surrounding you. The health visitor was spot on at an early age, allergy, intolerances, sensitivities; GP was a trial and the health visitor said her GPs never ceased to disappoint her.
When the medical practitioners cannot decide amongst themselves, what is one to do?
When my son was old enough to decide for himself at 14 we went 'doctor shopping' and saw the late (great) Alan Franklin, bless him.
Now that was what made me a 'marked mum'...... as the local community paediatricain treated me as though I had consorted with the devil. Ask Nigel Speight about what happened in Suffolk , or Margaret Mar in the 1990s.
Or watch Panorama (Sick and Tired) with Matthew Hill........http://news.bbc.co.uk/1/hi/programmes/panorama/archive/506549.stm

Justice was never done for child X from Suffolk.

 

@Suffolkres, can you please share a link of some information on the child x case please?

 

https://me-pedia.org/wiki/Sick_and_Tired_-_BBC

http://news.bbc.co.uk/hi/english/st.../panorama/transcripts/transcript_08_11_99.txt
I have downloaded and page numbered.

It is highlighted pages 13-17.
The good news,
PS Young man is now 36 and much better, thankfully.
Recovered enough to eventually move on with his life, study, marry and has a baby!

PS his difficulties at 14 followed virus and vaccination (with know contaminated batch).

 

Now you see the relevance to my drawing attention to this 1999 documentary.
Do leopards change their spots?

Community paediatrician Alan Stanton-Consultant Community Paediatrician, University Hospitals Birmingham -G D Committee 2019

https://me-pedia.org/wiki/Alan_Stanton
Sick and Tired documentary
The BBC documentary Sick and Tired (Panorama) described the background to the General Medical Council complaint about Alan Stanton, along with cases of several doctors who later lost their license to practice as a result of falsely accusing a parent of child abuse.[1

 

I sat dawn with my coffee and read your post Johnathan and like the caffeine, you are so needed. In a world gone mad I'm not sure if I could cope without you, Science for ME and all the community.

I help support Fiightback and the situation is beyond words at the secret courts and the false record keeping along with the inability to find the right information that fits the condition of the child, is beyond comprehension. The amount of mothers packed off to prison or children taken away because a lack of a name to their child's illness is staggering. Courts, Education, Social Services along with PIP need a name for the illness and I'm not sure it is the parent pushing for a name.

Dr shopping for many of us is not an option due to that is the second red flag Dr Glaser looks for. The first is an unrecognised condition. That is another reason a name is useful. Most parents would not bat an eyelid at Medically Unexplained Symptoms, if that meant we were given the right information to support our child. But as we all know that is not the case.

The new tool kit for EDS is this helpful? Well from my point of view it could be. I'm not sure you would agree?

I suffered with many things including 5 miscarriages, cysts on the ovaries (psychosomatic then they told me I gave the wrong symptoms. The cyst had a tooth and hair that was clinging on to other organs) endometriosis not taken seriously (apparently I had a low pain threshold, I have given birth three times with not pain relief so I would question that) and all the other problems you get. My mum the same, and we both nearly died due the hysterical woman approach. Personally I don't care what you call a condition I just don't want my daughter going through what my mum and I went through.

https://www.rcgp.org.uk/clinical-an...-ehlers-danlos-syndromes-toolkit-for-gps.aspx

IBS me, my daughter, my son and me. It took me 2 years of my son declining in health, to ask for a test for my son for celiac I'm intolerant and my son who has ME form the age of 8 now 13 is celiac and I would say we both need to be tested for MCAS, he has POTS. When you read the history of Ean Proctor's mother, Sophia Merza and Merryn Croft you see the pattern emerge of PEM causing eating problems and with my son this is most deferentially the case.

We know that wheat intolerance can do to the lining of the gut and we know that top athletes have to be careful of over training. Looking at the two brothers crossing the line at their race you can see ME take shape. This is what happens to my son when he goes to the toilet on a bad day

https://www.youtube.com/watch?v=w-eeTHH8-L0

. How he feels is the sames as Johnny we could learn so much from those in the sports field

https://www.youtube.com/watch?v=8a1eEtGAuiY

. Henry Worsley on his epic challenge was found to have bacterial peritonitis, at the same time Maureen Hansen work comes out on the Gut will Redox and lack of oxygen in the gut give us answers?

When in PEM my son cannot eat potatoes, tomatoes, peppers, drink milk eat fruit or chocolate and after each meal he will go cold and IBS hits the roof. I know when he is coming out of PEM as he asks for a hot chocolate. This has been for last 5 years so not a fluke. Why is that? why is the sensitivity heightened when he he is in PEM?

When I started to get a grip on ME and the PEM state, I noted that just before my son went into a PEM state, deep purple marks would break out over his knees at first - he was 10 at the time no growth spurt he was still undiagnosed celiac so small for his age. When I was threatened with FII and courts I drafted in Dr Speight. He noted the headaches that I first thought were either connected with tummy migraines or sinus headaches. my son also had a long standing cough. Dr Speight questioned Hypermobility toes,ankles, legs, elbows and now fingers).

5 years on they just dismiss his hypermobilityor EDS and do not want to label him with another disputed condition. My thoughts is that if you have connective tissue that is showing on the skin, what is it doing to his joints and organs? How can I support my son and know how best to keep him active with POTS. When his joints like spent elastic bands, will building muscle really help and how can I do that with ME? When reading a book or laughing with his brother and sister causes his HR to go up to 200 and into PEM as walking or exercising we are truly missing something. We don't discover because we don't look at PEM or listen to those with the condition?

His marks are now across his back around his rib-cadge and they look aggressive and they upset me, for 101 reasons but mostly because this is not normal. He can hardly breath most of the time his chest feels tight and he says he cannot expand his chest enough to breath. His throat muscles act in the same way and when he is out of the PEM for a few days, this tightening eases. If I try to explain this to any medical staff we come in contact with, I'm treated like the demon mother or explaining something that simply does not exist in the medical world.

Compliance with the Drs understanding is necessary if you want to keep your child safe. However it stops us from learning.

If you listen to the mothers they tell a pattern of their children and those children that have grown up with this disease could hold some clues.
Ean proctors mother http://www.ahmf.org/ww-ean.html
Emily Collingridge https://www.me-pedia.org/wiki/Emily_Collingridge#Illness
Sophia and Merryn dorsal root ganglionitis

It took a lot of us to get Bethanie out, but it cost her family a lot more, her mother "Bethanie lost four years of her life, she lost the rest of her childhood, and I've lost my life savings," she said.
https://www.facebook.com/BelieveInBethanie/
https://www.bbc.co.uk/news/health-4...mtf2JNlxWIDXvMgzHXolpWpfPNsEmYxDWsmTzs-M_25go

We don't need a name or full facts we just want to know how to keep our kids safe. We end up doing harm because we are not supported and demonised. We may not have the medical knowledge and bark up a few wrong trees, just like science. But these marks are on a lot of our kids with ME and they are not normal?

 

Alan Stanton is on the NICE guideline development group - appallingly - despite his previous GMC complaint related to one of the cases mentioned above and his continued publishing of how to force treatment on children who don't consent - including 17 and 18 year olds - and how to remove their parents from the decision making process.

The Story of B told by Carol Monaghan in the last ME debate was heart breaking.

Also a reminder that the adult patient equivalent is to accuse the severely ill patient of self-neglect and morph that into a mental health condition to force sectioning and force inappropriate treatment - as happened in Sophia Mirza's case. This can result from Adult Social Care - who are supposed to be helping and providing the care - kicking off a self neglect and psychological route.

 

By the 25% ME Group on preventing unnecessary sectioning in ME patients - KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING

Re: Fightback
They have insisted on "premium" membership which is supposed to be voluntary before helping people and also badly let down some people I know. They also guerrilla market themselves online by recommending themselves to patients. Wouldn't go near them.

I believe several ME charities offer case workers. I wouldn't trust a non-ME charity to be able to understand the risk of inpatient care or things like environmental issues.

 

I think he gives a good description. Doctors should listen and think about it.

 

Had the GP out to him and he went through the motions of taking his temperature etc you could see that he was not going to be convinced that he could do something for my son. The marks he just shrugged at. He said about Psychological involvement and said this did not mean it was all in his head.

I explained that was his first line of treatment, but they did not pick up on the celiac at all and we had to change hospital after I was being accused of making my child sick.

They have now rolled out Integrated Access to Psychological Therapies (IAPT) in my area so he will now be known and Medically Unexplained and this is the new buzzword that parents are hearing. It means you have to see your own doctor and if they are clueless you don't get treatment and are treated with disrespect as far as I can tell.

Patients are tracked for wasting GPs time I think Gps should be monitored as to how often they miss a diagnosis. If that was done they could then target areas of where they are getting it wrong and strengthen up their lack of knowledge.

 

What is "premium" membership?

That is a worry if parents have been let down.

I have never been offered a case worker.Acton for ME just filter you through to Bath. I have 101 things to say about that.

We need an ability to be able to complain about the treatment we receive and the missed diagnosis that our children receive along with false accusations that we have faced. Until that happens going to the doctor or AE is dangerous for our child's health.

 

we're all ears!

 

Mum on closed forum who went to AYME/AfME when school created problems. Her daughter had a diagnosis.FII accusation.
Advice was to follow EC protocol, didn t accept it wasn' t working. Tymes Trust intervened on family' s behalf .