I love the changing months, don’t you? I find it the greatest pleasure in life I think, the freedom to explore those changes. Be it rural countryside, town or city to see the changes of the seasons is a way of viewing the landscape with fresh eyes and senses.

The excitement of January leading into February with the lengthening of the days, everything is just waiting to leap into action. The fresh buds forming this year’s display of beauty is in every tree and shrub. You have to admire the Crocuses popping their heads above the grass, opening up in spectacular glory, delicate and oh, so brave at this time of year don’t you think?

Those concealed and tightly cocooned buds are like closed bursts of joy, filling out and loosening their grip waiting to pop out their magic. Plants and trees waiting to build on the previous year’s growth and those daffodils popping up in more abundance than they did last year, like little family gatherings building into that “host of golden daffodils” invigorates my thinking.

As I struggle against the bitter gusty wind and drizzling rain to retrieve the washing and the odd sock from our beloved sock killing terrier, Amber, I look up to see my son’s window and wonder if his “inward eye” can still remember how it all felt; that freedom of wondering around pain free and able to breathe easy?

I giggle as the line in William Wordsworth poem “I wandered lonely as a cloud” plays in my head. Looking up at the sky with its canopy of clouds I ponder - are clouds ever alone? We may just see one in our felid of vision but there must be more in the sky around the world.

Solitude, I used to dream of solitude. We all need it, to gather thoughts and allow our brains and minds to think with wondering thoughts. However, when it is forced on you when you are a carer or due to a body being unable, how do you fill your heat with pleasure?

Sometimes you know when I look out at the blackbird and the robin singing or tugging at worms; mostly when I’m doing the washing up, I’m finding it harder to look on those wonderful sights with pleasure and the frustration of being bound and gagged by my son’s ridiculed illness, is becoming harder to bare without that bubbling anger.  Over the last seven years I have learnt a lot about self-control while being gaslit by those out of control gaslighters.

That poem reminds me of those long walks of babbling fun with my youngest son; a double edge sword now that can cut deep. Those carefully kept moments in time, when we had taken his older brother and sister to school, that I laid down so carefully to look back on are empty and hollow now.

He was never happy lying down, so pram walks were out of the question. I carried him in a pouch and then in a backpack. He wanted to be upright and able to see as he slowly slipped into slumber. This was my quite thinking time while the baby slept, and the dog wagged its tail while sniffing the undergrowth. This time, however, was short lived. Quiet reflective time was out of the question past the first few months. In the backpack he would babble with authority and would communicate all sorts of tricks to Grace our black lab.

As soon as Angus was born, he was alert, active and so full of life it was breath taking. He was never happy taking a passive role, if there was action, he was right in the middle of it and mostly the instigator of it. Some days I would stand back and marvel at his ability to cause mayhem in the most unexpected ways. He liked to do things in a pattern but occasionally he would break that pattern and all hell would break loose.

You see most mornings he would play with Grace next to me while I got on with putting the washing in. Hoping he was exhausted enough to just read a book or possibly having a little nap so more of the morning’s chores could be achieved. That gentle routine had been established right? Only a matter of planning another activity and well life was sorted - right? However, that gently and well-established routine had lulled me into a false sense of security.

Welcome to a Tilly Moment

I had my back to him, that cold and exhilarating morning, I was sorting and putting in washing while making a list in my head of the plan of action for that day. As children often do, he would copy me and as he sat there book or ball in hand and sock in Graces mouth his gentle babble and odd garment thrown that routine had put a glorious smile on my face.

I was mindful that Grace thought she was a washing machine and her spin cycle was out under the apple tree, which would only stop when she had found just the right spot to lay the item or items freshly laundered on the most muddy spot she could find. She would then sit and patiently wait for my arrival. This was playtime folks, oh the joy of it!

So far so good and everything under control take a deep breath.

I had just seen the tail wagging like a starting flag at the beginning of a race and wanted to turn on the washing machine before I started to “retrieve it or lose it” game and yes I did wonder which one of us was the dog, Grace for the “chase me” or me as a “retriever? I would find the odd bra when planting bulbs or stuck in the oddest of places in the kitchen - normally when I was making a drink for a client. Have to give it to them, they definitely kept me active, mind, body and soul. 

This day however, for whatever reason was not going to that well-ordered routine. Turning round I was gobsmacked as I surveyed the carnage. The washing powder all over the floor, in Graces Watering bowl along with my sexiest and only one left, bra being used as a tug of war rope. It took me a few moments to register the fact he had unlocked the baby lock, opened the seal of the childproof box and where did he get the jug from, and the chalk, glitter and glue?

Grace’s tail was causing him to go into hysterics as it wagged. Adding to the hysterics was my flapped around trying to retrieve as much powder and put it back into the box. I grabbed the chalk from his mouth and dumped the jug in the sink. I wondered if I could use the rest of the glitter festooned washing powder in my husbands work clothes. After all he did tell me his life could do with a little extra sparkle.

I took Angus over to the only Angus safe room in the house. I was too stunned to be cross and as I put him down. He just got up off the floor wagging his finger at me as though I had done something wrong. Turning back from him and the child gate, I couldn’t help myself but to chuckle.

After cleaning up the mess, I made a coffee to get ready to read the book he would have chosen from the bookshelf. It was our time - me for a coffee, him for a story and Grace for a bone. I made notes not to buy powder ever again and complain about the child locks, childproof box, surely Angus can’t be the only one who could open them?

I found him, however sitting on a large pile of books reading one to Grace who was intently looking at him. Not sure if she was listening or just waiting for a bone but it was a wonderful sight and I stood listening for a while. When he saw me, he tried to scramble off at such speed he rolled down the mountain of books and bumped his head. Wondered if he should cry for a second or two but decided to carry on reading, red mark forming on his forehead like a large egg and grace with her chin on his chest - his constant guardian and the ultimate companion and protector from his mother’s telling off. Her golden amber eyes all-knowing and loving, just put things into a perspective. He is only young once - he will learn - let him be.

Grace died when Angus was around two. Our companions now are two Norfolk x terriers’; mother and daughter. They taught him to ditch jump and run in circles of joy. There were times I just wanted 5 minutes peace to listen to the bird song, breath in the fresh icy air and drink it all in. Or to sit for a while and have a quiet cup of coffee looking at the robin and blackbird, as they sung in our garden. The feeling of satisfied exhaustion settling down my day while I read to him and he slowly slipped into sleep. I would look on him as I did the tightly closed buds of that emerging spring. He was so full of potential, joy and wonder just ready to burst into life and make his mark.

It is these memories and times that I remember now when I walk. They bring never ending tears in my heart, that prick my eyes so that I can no longer see the beauty around me. I am riddled with guilt when I walk, as I walk free and easy while he is cocooned in pain and in such depleted energy.

The exhaustion I felt back then was one of fulfilment, the exhaustion I feel now is of frustration of being let down by a system that is hell bent on portraying me and thousands of mothers like me as “demon mother”. There are 101 reasons for this you can read them in my blog over the last 7 years.

However, nothing compares to my son’s exhaustion. It is like watching your delicate promises of this year’s perfect rose being frozen, while gradually seeing tears appear in those delicate petals, one petal at a time.   I feel as if I’m watching that most glorious rose bush, stand alone with stunted growth, riddles with viruses, mildew and green fly, wondering how much more it can take.

I have always dreamed of writing a silly little blog, full of Tilly Moments for friends and family to enjoy. That came to an end when Angus fell ill with Myalgic Encephalomyelitis (ME). They renamed ME with Chronic Fatigue Syndrome (CFS). My son does not have fatigue, he has exhaustion in every cell of his body. Heart breaking as it is, the worst thing about it is the abuse of mental illness, being used as patient blame and demonising motherhood. It is easy for the medical profession to convince the public those that suffer with complex conditions, are unworthy of support or biomedical research or treatment.

So, what to do? How do we change things? I can’t leave it like this can I?

Change will only happen if we start to talk about what ME means and allow those young people like my son to have a voice. Problem is, he is too ill to engage and talk. I need the public to get behind mothers and bring back the respect and common sense. The evidence that mothers have been keeping children safe for millennium is there for us to see and how many children needlessly die because a mother is not listened to or discredited.

My son’s body has changed not his personality or his mental state. The only suppression of his personality is the debilitating illness he suffers from.

He maybe frozen and damaged but his humour is intact and from time to time we have still have “Tilly Moments” and by hook or by crook, I will continue to write our silly happenings to bring awareness to the lived reality of ME but mostly to bring a smile, a giggle or perhaps a belly laugh.

How Have We let This Happen Again? Forced Adoption

How Have We let This Happen Again? Forced Adoption

On Tuesday 11^th September 2018, I attended a seminar in Westminster with a determined, courageous and inspiring group of mothers who have come together and created the support/campaign group @Fiightback.

This Seminar was organised by Legal Action for Women a grass roots legal service. LAW have worked tirelessly since their creation in 1982 to enable women who have historically been silenced get their voices heard and their rights recognised.

This seminar was called “Do NO Harm”

One of the guest speakers at this seminar was Mr Andy Bilson Emeritus Professor of Social Work at the University of Central Lancashire, who is working on the rising levels of children going into care. Professor Bilson spoke about the increase in child protection figures, which alarmingly in children before the age of 5 is now at a staggering 1 in 16 children. Professor Bilson went on to clarify that equates to a staggering 52 % rise in adoptions before the age of 5. These are truly astounding figures.

Here at Fiightback, we are seeing an alarming increase in child protection cases involving children with chronic and complex illnesses along with children with autism. It would appear mothers/parents seeking appropriate statutory support (EHCP’s) due to the multisystem needs of their children seem to be targeted for Fabricating and Inducing Illness; a new term for the old Munchhausen Syndrome by Proxy.

I was shocked when listening to the first hand personal accounts of these proceedings, which were read out by courageous but still clearly traumatised family members. Emma Lewell-Buck MP, Shadow Minister for children and Families also gave a stirring speech about how the practice of forced adoption has been reinstated. It took me right back to the 50s 60s and 70s and I ask the question how could we let this happen again?

How have we regressed back in time from a point where the Prime Minister has issued an apology for those children harmed by forced adoptions in the 50s – 70s, to where it is now happening again for no good reason in 2018?  Support is what is desperately needed in our society not separation.

Draconian measures are being ratified in both the USA and UK, an outcry went up when Donald Trump took children away from mothers in the US and yet the state can do the same here and we hear nothing?

Our support system is now turning on families aggressively harming innocent children without due care, understanding or process whilst other countries look on with astonishment. We should be hanging our heads in shame.

When people like Lord Nash, former Conservative Parliamentary Under Secretary of State for Schools and co-founder of the charity Future, are sponsoring academies that are running out of control. Is it really surprising that we find our education, health and social care doing the same? It has now been revealed that the same thing is happening with forced adoption, which was another reform Lord Nash was calling for.

In the Queens’s Speech the UK Conservative Government introduced a Children and Social work Bill. This was to ensure that children could be adopted into new families without delay. It was supposed to improve the standard of social work and opportunities for young people in care in England. The resulting reality is anarchy and misuse of forced adoptions.

We then come to supporting a child’s needs when in the care system. Care for sick children is wholly inadequate with children physically unable to take a shower for themselves, they are often left alone with no education, no healthcare provision or dental appointments, all because they have conditions that are little understood and do not get me started on how they are viewed by professionals.

Dr Speight, a leading and world-renowned specialist in Myalgic Encephalitis (ME) a complex condition with many systems that have dysregulation that makes the condition complex and hard to understand, also comes under attack from other professionals who use the system to their own gain and advantage. Dr Speight has never shied away from protecting children, but he often suffers due to putting his head above the parapet as the NHS whistle blowers do, he explains:

Parents naturally move heaven and earth trying to get a diagnosis and the “treatment”, often needing several “second Opinions”.

When the treatment doesn’t work or makes the young person worse the parents are blamed for withholding from treatment.

He goes on to say

I’ve seen several cases of proceedings driven almost certainly by a desire for revenge on the part of the professionals.

Dr Speight has attended 20 families accused of FII in the last 5 years who have been taken to case Conferences. The wretchedness of having an ill child who is deteriorating with no treatment, let alone fighting the system is utterly devastating. With Tymes Trust having over 200 cases of families being falsely accused, at some point someone somewhere must look at this situation and recognise the system is not only failing but is not fit for the purpose that was originally intended.

We hope this seminar will provide the long overdue recognition this issue demands.

We have to stop the rot and discrimination.

Listen to those that know Dr Rowe from the US and DR Speight from the UK 

http://voicesfromtheshadowsfilm.co.uk/paediatric-mecfs/

Both have written in the world renowned 2017 paediatric 

 https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

My Special Educational Needs and Disabilities - written submission

I very much appreciate that you have invited the parents to write in with their lived experience. I hope in the near future you will have an open and full dialog with parents and their children. Children can and do speak eloquently of their reality and professionals grasping their understanding is of paramount importance. They should be closely listened to.

I would first like to explain how we as parents are treated. We are viewed with suspicion, and we are mercilessly gaslighted. Fabrication and Inducing Illness is being brought in across the country in education, we seem to have forgotten the cot deaths in the 1990’s, this accusing all by untrained professionals will have a massive impact on society and family life in the UK.

Mental Health is in disarray, with a lack of understanding of cause and effect. Misdiagnosis of many physical conditions and or lack of vitamins and minerals for a lot of different reasons; such as celiac disease can have a profound effect on a growing brain and body, but on average takes 13 years to get a diagnosis. We need physical cause ruled out before mental health is thought of because of the problems it causes children when misdiagnosed.

If you look at the way dyslexic children have been treated along with those who have autism, and still are. Autistic children are seen as behavioural problems/Mental Health problems and not as a different viewpoint from the norm. They are given medication that is not needed and very little support within school or society. Now they are taking that understanding of diagnosis away, so therefore they will be seen as? Disruptive normal children?

With a diagnosis come support and understanding and great things can be achieved. It is the mindset of education and Government officials that needs addressing with regards to “labels”. Giving people a “label” is understanding their needs.  Have we not learnt from Christy Brown (My Left Foot Fame), are we now just turning back time on disability?

Being profoundly dyslexic on bad days and just about able to read and write on good days, I was applauded at the lack of understanding of the needs and cognitive processes a person like me must go through to read the simple Lady Bird passages. All three of my children are dyslexic and nothing in reality has changed in nearly 40 years since I was at school. Fighting an educational system that would rather gaslight then support. Trust is gone, what authority says, preaches and does are very different things. They delegate responsibility onto others, giving no power to enable change in outcome. In other words, they talk a good walk, but cripple those that have to walk their talk.

My two eldest have been supported by me to get them to University, yet the school take the credit. No notes are taken of the extra measures I put in place, so no understanding is achieved. Both my children have had lack of understanding of the emotional trauma a school brings down on them when they were unable to keep up with their counterparts. The teachers often were frustrated with their progress but did not have the capacity to listen and act upon the information they were given; not just by me.

Ofsted do not look for the support and understanding of the curriculum with regards to children with Chronic conditions. When in chronic and unrelenting pain there is no capacity to learn, no headspace for anything other than how to breath and meditate your way through.

Physical health is not looked at as a possibility when I first came across SEND

My youngest son became very sick at the age of 8. I received no support, empathy or allowance for the fact he had multiple infections, and multiple conditions. The Educational authorities are aware of the pressure doctors are under, and yet I found both medical and educational professions fighting to delegate responsibility. Furthermore, they expected me to understand their jargon, the way they worked and what they needed from me.

All organisations are only too willing to bring my ability and hold me accountable for their failings.

I had to find out all the information myself and am used as a go between; an unpaid employee that they seemed to think they needed to give very little regard to. To find the information took me about a week of tracking down who is responsible, then I found I had to adapt all forms to fit a physical disability and not anxiety as a school refuser. I have two arch lever files of letters written to gain support from medical and educational staff. All at a time of unbelievable stress trying to juggle all the needs of others rather than concentrating on my family and my very sick child.

There needs to be a full review with an honest reflection of diversity of disability (including invisible disabilities caused by long term chronic conditions) and educational needs. Painting a true picture of the child as an individual. At the moment; it is more of one size fits all with a defernite leaning towards school nonattendance that is put down to refusal as the fault of parenting.

Forward for ME parliamentary Group, Chaired by Countess of Mar have minutes of meetings dating back from 2009 with regards to education for children such as my son with the invisible and Chronic illness Myalgic Encephalomyelitis (ME). Along with Jane Colby of the Tymes Trust (a former Head Mistress) they have tirelessly strived to achieve the proper and appropriate education for children with ME. The Tymes Trust has excellent information, experience and support, both need to be listened to. Yet, in my experience you can give the information, but if the Educational establishments do not want to listen it puts parents and ultimately their children in a very difficult position.

However, I have been lucky with the support of Tymes Trust, once a home tutor was put in place I found their ability and experience to work in harmony with my child has been exceptional and should be celebrated, understood and promoted as part of the gold standard of any educational system.

We should be proud of those that achieve against all obstacles, and not those that achieve through good luck, good health and fortune.

A Mad Hatters Tea Party In A Wonderland of Despair

Why Have We Got Chocolate Teapot Science?

And Not The Elegant Bone China Science!

A Mad Hatters Teaparty In A Wonderland of Despair

I guess there are 101 reasons why Myalgic Encephalomyelitis (ME) has more than its fair share of chocolate teapots. What makes health professionals lose their humanity in such a chronic illness? You do have to wonder why and how this ME Wonderland of Despair has been achieved. Come with me down the Rabbit Hole to witness a land we are forced to live in.

When you read the history of ME, you start to see the organised chaos of a Mad Hatter and the March Hare, and how they have been allowed to take control over an exclusive Teaparty. They have achieved this with just linguistic gymnastics and passive aggressive psychobabble semantics. There is no sound proven evidence of behavioural disorder, mass hysteria or mental illness in ME. Their own evidence proving that ME sufferers are not against mental health or suffer from mental health per se. Still they shout out off with their heads, they are vexatious activists not to be listened to, every time the chocolate Teapots start to melt, and people have started to take notice, or a water tight Teapot is brought to the table.

The sleepy dormouse of the establishment tries to lose their responsibility, but is sleeping on their watch a defence? As the dormouse’s slumber they are leaned upon, the closeness of their acquaintance an uncomfortable truth. So, the evidence of the truth is then hidden and never spoken about, anyone who tries has gaslighting shone in their faces. Denying medical evidence is another trick they employ, with the help of those allowed to sit at the table of the Mad Hatters Teaparty. Saying there is no place unless you drink the wine, when you ask what wine, this is then given as a reason to stop you from pulling up a chair.

The evidence of the torturous treatment imposed is denied, even though Ean Proctor, Sophia Mirza, and Naomi Wittingham; to name a just a few, show this to be the case, it is all explained as a necessary evil. For Decades the ME Wonderland has been in a medical Rabbit hole, with the Mad Hatter running the show and a teaparty to rival all lavish and unrealistic occasions. Abandoned by reality, truth, integrity and honesty.

The elegant porcelain teapots holding the boiling water, which made a lovely brew for all to see; like Dr Ramsay’s diagnostic criteria in 1986 and the understanding that ME could become chronic quickly, have been covered up by the ugly mess of the chocolate teapot science. Those Teapots held a brew of cherry blossom tea that is both bitter and twisted, with drink only me on the labelled spout.

All the Bonbon dishes have been kicked about too and we now cannot tell the difference between a humbug and a toffee, with not a Dolly Mixture insight. Humbugs; are masked injuries leading to an emotional response, lack of minerals or other physical stress like virus, mould, chemical etc. to the body. Toffees are those who have lost all outer protection and are in an emotional meltdown. The research into triggers of either, should never be covered in chocolate teapot science, and nothing should be assumed. Never to look for the physical in the psychological, is a big mistake. We should have learnt this lesson, but we seem to be going backwards with the biosocial approach.

We need to understand how and why mental instability occurs and how we can support sufferers. The problem we have, is that everyone gets lumped together. The introduction of Cognitive Behavioural Therapy (CBT) from the PACE trial has damaged our understanding of Mental Health.

Many that suffer Post Traumatic Stress Disorder, find that physical energy enable them to cope, but this is only part of the foundation they need to recover or live with their new reality. Talking therapies given at the wrong time, with this disorder can make the trauma go deeper. We are all individuals and we need to be seen this way.

To not understand the relevance of the toxic mix in the Gulf War heroes is beyond words. To put their physical stress as Mass Hysteria is way beyond Alice in wonderland.

The main researcher in the area Gulf War syndrome also talks on the First World War and never mentions gas poisoning, or the impact the explosions had on the brain. Yet we freely talk about the footballers head injuries and how that effects and damages the brain. Does no one else see the madness of the this wonderland of misinformation were pet theories take over good science.

The Mad Hatters Teaparty has taken over the normal everyday reality of life. The normal blips of emotional instability due to normal stressful events we all go through, hormonal, dietary or illness is being infiltrated and seen as only a mental illness. Understanding the physical, emotional and body stressors can make a huge difference to support given and enabling recovery.

Let’s take having a baby. Having a baby puts an enormous demand on your body, social standing, and alters the meaning of life. If we look at this, we have a balance in our Bonbon dishes, a real mixture of both humbugs, toffees and Dolly Mixtures. Unfortunately, we now hear a lot about wellbeing and mental health with regards to becoming a parent. Not so much about the support once given by family and friends that was both supportive and educational. Neither do we hear about diet and rest.

Now, you must be ready not only to be a parent but also take on the world. This is orchestrated by those that can afford to pay for support. We seem to have lost the understanding of the hormonal changes you go through, the bodies increasing needs, and distinct lack of sleep. CBT or talking therapies will not take the place of family support, hormones, minerals and sleep. In effect the humbugs are not recognised and only the toffees are addressed. All Dolly mixtures trampled on, giving an imbalance of treatment. This then translates to an imbalance in the parent’s self-belief. The result is that Chocolate Teapot science is allowed a free rein to brew more Cherry Blossom Tea.

If you were given a hormonal, thyroid, folic, iodine, iron, calcium and magnesium tests through pregnancy all the way through to when the child has been weaned, one wonders what correlation you would find on the general physical and mental wellbeing of the mother and child. The Bonbon pot would be balanced and full.

Let’s take just one of those little building blocks of health and wellbeing that make the Bonbon pot balanced. A little and unknown about building block called Iodine. This one small part of our diet is hard to incorporate as our food is relatively low in it, and the environment is depleting it. It is essential for a fetus and young child’s brain development. During pregnancy a woman’s iodine needs are increased. If we don't know about it we don't increase it and we can't track it to the cause, so we blame mental health.

Now when I was pregnant with Angus I was constantly sick, and it was agony eating. Forcing your gag reflex to behave is not easy, I was sick 24/7. I was also unable to eat much, what I did quite often came back up. So what effect would that have had on me and Angus. Low Iodine means low thyroid hormone and can lead to low birth weight and premature delivery. He was early but not unduly so. My hair is so fine you can see my scalp. I have lost 5 babies and I also have hypermobile joints. Low thyroid also gives you muscle weakness and affects your emotional stability. No wonder then that I cried when I kept dropping things, it was not my sanity I was losing, it was my iodine, among 101 other things. So why do we not track our levels of these building blocks of body and mind? Chocolate Teapot science?

If that had happened and our understanding of the importance of all those building blocks through illness I wonder if Angus’s ME, Celiac and hypermobile joints could have been tracked and a recovery found. Would Sepsis have been looked at as a possible cause of his condition or the slow sepsis that Dr Bell has thought about, taken more seriously. Would tracking them now show us a difference in his Post Exertion Malaise (PEM) and cognitive dysfunction when he enjoys life a little too much?

Chocolate Teapot science wants to show we have full control of our minds, but that is never going to work if our building blocks are missing. We must get realistic; Chocolate Teapots are never going to hold the hot water needed to brew a robust tea.

Most of us cannot read our blood results, so we rely heavily on the medical staff to do this for us. They intern rely on the education they receive, this intern relies on watertight research, carefully measured with the right blend of tea, that is brewed for the right amount of time. If the Teapots don’t hold water and the brew all wrong, with the Bonbon dishes uneven we are all going to live in a costly mess. This is what has happened to ME. A costly mess, through lives lost and the fabric of society and its thinking ripped to shreds.

This mess has not only cost lives and stability in the medical profession, research and the finances of our country. It has brought in to question the trust we place in science and those that preform it. The debates now going on in parliament with regards to PACE trial and Science trials in academia need to be public and balanced. Thanks, to TV in parliament we can see what is being said, and I am appalled at the haphazard way research can continue in our Universities and hospitals.

This Wonderland is now a world-wide problem, caused by the Mad Hatter and his ability to cover the table with Chocolate Teapots, to kick off the Bonbon dishes, taking out all the Humbugs, telling everyone there’s only toffees and no such things as Dolly Mixtures and to move on, there is nothing to see.

Good doctors have been taken to the GMC if they dare to mention diet supporting the body, as with Vit B12, looking out for Thyroid problems! Dr Myhill has been taken to the GMC 28 times and the GMC has not investigated why this keeps happening? ME could have been understood and treated decades ago if the truth had been told and acted upon. So why was it not? Political or Empire building?

Mothers like me are questioned when we do not want to torture our children with CBT and GET treatments, as happened with Ean, Sophia and Naomi. At anytime I can be accused of Fabricating or Inducing Illness, like those mothers that have gone before me. I have no defence or support and my child can be taken in as little as 30 days. You can see the harm that has been done when you watch the YouTube videos I have listed below. This has been covered up by those friends sitting at the Mad Hatters Teaparty. My Rabbit Hole of reality is truly a Wonderland of Despair.

The Medical Research Centre has never put resources into the management of these vital building blocks to our physical and mental wellbeing with regards to ME. No scans of the brain looked into why? So how can we ever know what affects the sufferer. This is just one small part of the problem at the Teaparty. Sepsis, I say Sepsis. Slow sepsis has been talked about for a long time now, and is never looked at with regards to ME.

Looking to include all known factors, inviting all those with China Teapots and Alice herself, to sit at the table is what is missing. Most important is to listen, as Joseph Montoya explains ME has been whispering and we are not listening.

Alice should be asked to the table and her voice should be heard above all others. The questions she asks can take time, but Michael Sharpe is right Prejudice is a great time saver. You can form opinions without having to get the facts, Chocolate Teapot Science is easier, and he should know. If you have a mad Hatter controlling the Party, you will never have to get balance or truth.

We are only beginning to understand the very basics of our food, gut, brain and wellbeing it’s about time we got some porcelain research and cleared up the chocolate teapots and got everyone sitting at the table with clear direction, to support good science and those patients that suffer.

Will we ever stop going down the medical Rabbit Hole and have a bit of reality.

The result of this endless forcing you down the rabbit hole is "Mother Blame" a way of gaslighting the healthcare needs of 25,000 children away into another decade. As a mother how does that feel? Let me explain 

https://youtu.be/DNNeE6rhTm0

The Early History of

http://www.meactionuk.org.uk/Denigrationbydesign.htm

Naomi Wittingham and others voice the abuse that has been hidden from view

Naomi lived in constant fear of what was going to be forced on her next. This sadly still goes on. What will it take to stop this?

https://vimeo.com/ondemand/22513

Dr Myhill

https://www.youtube.com/watch?v=IOXCjZPboFw&t=74s

The Death of Sophia Mirza

https://www.youtube.com/watch?v=yrBAlKtroBw

Euan Proctor

https://www.youtube.com/watch?v=cDeu_OlMivU&t=50s

http://parliamentlive.tv/Event/Index/9c6ed4dd-664d-4a44-aaaa-4839f6e1503c

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3736612/

https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME

http://www.scielo.br/scielo.php?pid=S0103-507X2011000200005&script=sci_arttext&tlng=en

https://www.ncbi.nlm.nih.gov/pubmed/10497885

https://www.ncbi.nlm.nih.gov/pubmed/8107485

http://tidsskriftet.no/en/2017/03/case-reports/woman-her-50s-chronic-fatigue-syndrome-sepsis-and-hyponatraemia

https://www.celiac.com/articles/21645/1/Late-Diagnosis-of-Celiac-Disease-Increases-Risk-of-Sepsis/Page1.html

http://simmaronresearch.com/2018/01/chronic-fatigue-syndrome-mecfs-chronic-form-sepsis/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856764/

https://www.semanticscholar.org/paper/The-Role-of-Iodine-and-Selenium-in-Autoimmune-Thyr-Duntas/3b27ae172646572e6d31676e3e02072639604c86

https://www.fabresearch.org/viewItem.php?id=7438

Is The BBC Under Government Controll?

BBC Complaints Told Me I Was Toxic?

Well That Fluffed Up My Tail-Feathers!!!

I got the same responce as Countess Mar; more or less the same word for word response. So I wrote a reply

I don’t believe I will get a level or concise response, and will think about making a complaint to Ofcom. Again I do not envisage getting much of a reply there either but feel you have to start somewhere.

http://www.meassociation.org.uk/2016/11/bbc-director-general-replies-to-countess-of-mar-about-coverage-of-the-fitnet-nhs-trial-24-november-2016/

Here is my reply and what do you think I should do next? Any point to it?

Ref: Cas-4074869-G7PJ8J

21^st November 2016

Dear Brian Irvine,

I was deeply unhappy and saddened by your response to my complaint about the mis-information 1^st November 2016 on the Joanna Gosling Show. The BBC is required to be accurate in reporting facts, impartial, and I would say, needs to be respectful to all.

To use the word Toxic in a letter about a medical condition in my view is unprofessional, and undeserving against a medical condition which is so devastating to so many, including very young children, I did take it personally.

Unfortunately I found no response to any of my questions raised, even though it stated that you had “reviewed the programme in light of your concern.” I raised many concerns!

You go on to say the discussion “was on the back of news that a therapy which successfully treats two thirds of children.” My complaint pointed out this was very misleading, not least because the trial had not even started. Furthermore the Dutch trial it is based upon, proved no long term benefit, and had no realistic harm definition, due to the known consequences of over activity in ME sufferers. 

My further point is that you have not included up-to-date research which would have made a big difference to the understanding of this disease and would allow the viewer a more balanced and unbiased view. You should have kept your selves informed and up to date with this illness.

You rely heavily on one particular group of people that the Science Media Centre (SMC) protects, and that have been discredited in their research and claims against other researchers, charities and suffers, the latter never getting an independent voice on national BBC Radio or News, only on some local BBC radio stations.

Listening to Steve Helwetts Media show’s interview with Fran Unsworth Deputy Head of the BBC News and on the board of the SMC, giving assurances the emerging government funding may cloud the transparency and threatens unbiased reporting, I am concerned in this case those blurrings of reporting; “knowing the government is listening”, is not as transparent at she would like?

My understanding of ME is a neurological, musculoskeletal condition with autonomic dysfunction, which causes abnormalities in the nervous system, autoimmune, cardiac, immunological and metabolomics systems putting the body in a dauer (meaning “endurance” “duration” “permanent” type of stasis (a period of state of inactivity) to survive) state. Causing problems: of a continual infections state, general inflammation, inflammatory of gut with connective tissue damage. If undiagnosed or treated in the wrong way for the individual, this can and does have life threatening consequences.

ME/CFS is now under review with NICE, taking into account the new and fast changing understanding of this multisystem chronic condition.

Points Raised from your reply to my concerns:

1.      The program never mentioned the discredited PACE trial of this type of treatment and should have been used pivotal in the debate. It was published in 2011 and was hailed by the SMC and the UK media in general as successful, also funded by the National Institute for Health and Research and Department of Work and Pensions. It was discredited and could have shown the viewers more balance. None of the patient’s views or experiences of this trial; to my knowledge have been actively sought. Unfounded and exaggerated accusations towards severely ill patients have been made by those involved directly or indirectly with the trial, and most if not all have been unfounded. One such patient at great personal health and cost obtained the raw data from the PACE trial through a reviling court case, where the judge dismissed the many dispersion's by the two standing against the data release. The re-analysis by independent statisticians found the data to be fraudulent and that instead of the claimed recovery figure of 22% after CBT and GET, the actual figures were only 7% for CBT and 4% for GET. So therefore the PACE trial was null. This bears direct evidence for parents to base their informed opinion on, for the FitnetNHS trial, which seems to be more or less the same treatment.

2.      The findings of the Dutch study itself, which was quoted by Professor Crawley was inaccurate (66% of participants were said to be “cured”) because it grossly exaggerated and mis-represented the findings of its small trial (Professor Crawley dismisses other scientific provable studies, as irrelevant due to their size). This study forms the basis of evidence of efficacy, so should have been questioned. They purported there was a significant difference in school attendance at six months between CBT and usual care (75% vs 16%). They did not make it clear that children who stay at home to receive treatment are at a big advantage, as travelling and going to hospital can make ME sufferers relapse. The ultimate findings showed no difference at 2 year follow-up. The presenter did not question this and failed in her duty to mention the “recovery” were virtually the same as for the entry criteria into the trial. The two principal investigators of the PACE trial professors White and Chalder commented on that fact “recovery” criteria was liberal and “not stringent”, a point that patients pointed out on the PACE trial and were called vexatious. 

3.      Behavioural theories play a heavy part in Professors Crawley’s Protocol. This theory has been discredited and deflated to the point of not applicable by most in the medical community. This theory was also applied to the Gulf War veterans, who largely suffer the same symptoms, and in the beginning were treated the same way. The implications of the protocol weigh heavily on the mothers parenting style. In this regard the Dutch protocol calls into question “The fact that long term recovery was negatively associated with maternal focus on bodily symptoms could be seen as an indication that during treatment the influence of this specific predictor had not been adequately addressed. And goes on to say a “separate programme for the mother is needed”. This I find rather strange as the trial is child led, by them being involved and reporting on their symptoms? Would this emphasis be acceptable for other neurological conditions or other autoimmune illnesses?

4.      SMILE Trial was never brought up in the conversations, though this is based on the same principles of the FitNetNHS trial. Yet again Crawley weighed heavily on the intervention of mothers and never released the data to show evidence, just alluded to its outcome, that mothers were responsible for noncompliance. What is more probable is that the children were no longer able to take part. The harms, just a small mention of one child and one mother going to hospital, the information however ebbs and flows or gets taken down from the internet. This trial was based on the controversial Lightning Process. This withheld information could have helped mothers like me, to make a more informed choice.

5.      The protocol leaves the option open to question the mother's nurturing style. This should have been robustly questioned in the interview.  Why is the necessity of this over bearing importance on the mother in a curative treatment throughout her trials, when the child has a physiological illness and is why I mentioned Karina Hansen. As Mary Jane Willows (AYME) works closely with Professor Crawley and for Children and their families who have been persecuted in this way, I am very surprised this approach has been acceptable to both of them.

6.      You mention Lizzie Horgan; who I believe was on the Woman’s Hour program some time back, again with Professor Crawley, and brings into focus my main point. Lizzie is learning to live with a debilitating illness, she is not recovered. I would say Lizzie is a level headed individual who is resilient and a great advocate for the ME community.

7.      Diagnosis for this trial: Professor Crawley says is based on the NICE guidelines, but she omits the cardinal characteristic of Post-Exertional Malaise (PEM). This error by stealth has now transformed their prospective cohort into fatigue only. This will lead to confusion and make the findings null and void to ME sufferers. This does not give clarity to doctors, social workers, educators, or parent/carers and can lead to great harm.

8.      You mention Jane Colby; she was given a room with others talking and laughing in the background, which must have been very distracting to talk over as it was to listen to. I found that very disrespectful to a lady who tirelessly works to impart the truth to schools about this complex illness and gain some proper treatment for children with ME.

9.      There should have been another researcher or medical expert that could have given a balance to the debate. Dr Speight unlike Professor Crawley has helped many severely ill children with ME and it would have been most helpful to hear his views on this matter. Doctor Speight has given many talks on the subject of children with ME and was part of the group for the International Consensus Criteria, which is highly regarded by researchers in the ME field. He also understands the importance of PEM.

There are many more researchers in the UK such as Professor Newton, Professor Malcolm Hooper, Professor J Edwards (his open letter about the email sent by Professor Holgate shows how the disregard to ME patients, other charities and researchers, perpetrates through some medical circles, not however protected by SMC), Professor J English, to name a few. Unfortunately they have been hampered by many in the SMC, who have chosen not to report on their findings and on the biomedical pathology presented at the International Association at Fort Lauderdale October 2016

It would seem Professor Holgate's interventions through, amongst other measures, email against young researchers such as Keith Geraghty goes unnoticed. His treatment by some of those involved in the MEGA study has been disparaging over the last few years and you would have assumed a young researcher would have been actively sought and supported by those in the ME field. His efforts have been welcomed by the ME/CFS community and most charities.

10.  You say that the BBC cannot ignore stories like this, however you did ignore the bigger story of the PACE trial going to court and that outcome, and this shows a great deal of bias in your reporting. You also have neglected to report on the British Government becoming the first ever to be investigated by the United Nations for disabled human rights abuses. That it has condemned the “functional” assessments used by the DWP that were developed by the Wessley School using ME sufferers on the PACE trial biopsychosocial model.

11.  You never covered the question of not including the Karina Hansen story that broke at the same time as Professor Crawley came on the show? Neither did you address Sophia Mirza (whose autopsy showed physical problems), Emily Collingridge or Naomi Whittington and it has been brought to my attention of the court case of Ean Proctor. These four young women and young man, are worthy of a mention and to question treatment to illustrate the problems of over emphasising on the mothers input, and the problems that Tymes Trust deal with. They also prove what can happen if you push your body too hard.

12.  However it was the website references that you gave as evidence of a broad range of CFS/ME research that had me the most perplexed. It had just one biomedical study of old, one that show the difficulties that all research faces when trials go wrong, and two that show, the now discredited information about the difficulties the ME community possess towards researchers, which should be amended with some urgency. This I do not consider a balanced or unbiased view:

http://www.bbc.co.uk/news/health-31644618 One story to show biomedical research from 2015 which has moved on considerably and had very little relevance to Dr Crawley’s study. Furthermore, it was not an interview with the researcher herself and was given very little space, though I note you have a remark by Professor White who failed to mention his own study which pointed to the trouble sufferers have when traveling with increase of inflammation? Though I am no expert, I do feel this was relevant to Dr Crawley trial as I mentioned earlier about the travel:

Journal of Chronic Fatigue Syndrome, Vol. 12(2) 2004 http://www.haworthpress.com/web/JCFS  2004 by The Haworth Press, Inc. All rights reserved. Digital Object Identifier: 10.1300/J092v12n02_06

we found elevated concentrations of plasma transforming growth factor beta (TGF-ß), even before exercise, in subjects with CFS (median (IQR) of 904 (182-1072) pg/ml) versus controls (median (IQR) of 50 (45-68) pg/ml) (P < .001). Traveling from home to the hospital significantly elevated TGF-ß concentrations from a resting median (IQR) concentration of 1161 (130-1246) pg/ml to a median (IQR) concentration of 1364 (1155-1768) pg/ml (P < .02). There was also a sustained increase in plasma tumor necrosis factor alpha (TNF-cc) after exercise in CFS patients, but not in controls (P = .004 for the area under the curve), although traveling had no such effect. CD3, CD4 and HLA DR-expressing lymphocyte counts were lower in CFS patientshttp://www.tandfonline.com/doi/abs/10.1300/J092v12n02_06

One about contamination and a retraction of the paper in 2011. I have no idea why you have given this as evidence of unbiased reporting,  as again it was not an interview and this debate again has moved on. Though if you had debated the PACE trial, which had similar problems I could have understood its inclusion. http://www.bbc.co.uk/news/health-15017660

You have never mentioned one of the many important papers and would suggest how wrong it would be to do any form of extended or keep going life style. http://www.openmedicinefoundation.org/wp-content/uploads/2016/08/Naviaux-PNAS-CFS-Metabolomics-2016.pdf  

Maureen Hanson:

https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-016-0171-4

Then there is all the work Fluge and Mella have been doing since 2011

The one about Tom Fieldings story that was given to him from the Science Media Centre, should have never been included. Dr Crawley admitted in a radio broadcast in July 2011 that she had not received explicit death threats but had misinterpreted one email to constitute a death threat and that her local police force had taken no action. Including this I find insulting to me personally, and to the ME community in general. http://www.bbc.co.uk/news/science-environment-14326514

These allegations were unfounded and should never be used against people trying to get to the hidden truth as regards to their very debilitating illness. In October 2016 they were dismissed by the judge at the First tier tribunal as “Without foundation” and “wild speculation”.  These were the same people that have continually been part of your news with regards to ME/CFS.  This type of tactic is used time and time again against all but a few that are protected by the SMC . I fail to see the relevance of the evidence you gave me of your unbiased interviews. To use the word Toxic in relation to any person, researcher or association is unprofessional and a strange term to use. It is unforgivable to use it when you know it to be untrue!

The last one was of the group of people you have reported on throughout your listings given and is very confusing. No coverage was given to any other professional with just a link to Prof Sir Liam Donaldson who states it is a “biomedical condition” but you have to press on the link which rather proves my point about your biased reporting? None of these are interviews or proper debates.

This was again an article by “By James Gallagher” and I think it would have been more appropriate if you had put in his: “The Inflamed Mind” BBC radio 4 program, can your immune system make you psychotic, as it seems to me this has more relevance to ME/CFS - as it would seem research is gaining more information and understanding on ME, it is looking more likely to be an inflammatory, autoimmune, and metabolic, dysregulation affecting the heart, putting the body in a dauer state. It saddens me our researchers have been held back by funding and more importantly support and less ridicule from the SMC is needed to carry these research forward in this country.

http://www.bbc.co.uk/news/health-14883651

13.  To openly say that the FitNetNHS trial promise recovery is in breach of many medical codes of conduct and to mislead patients by promising a cure when there is no such certainty, is in breach of the General Medical Council Regulations as set out in “Good Medical Practice” (2006) which was brought to my attention by the Countess of  Mar.

“Providing and publishing information about your services-paragraphs 60-62

60. If you publish information about your medical services, you must make sure the information is: factual and verifiable

61. You must not make unjustifiable claims about the quality or outcomes of your services in any information you provide to patients. It must not offer guarantees of cures”

This concludes my response to your points over my concerns

I would like to say why this matter is of the deepest concern to me. I am a mother of a 11 Year old boy who wakes up every morning as though lead fills his veins, the headaches are intense, nose bleeds, high and low blood pressure and heart rate, can black out when he sits up or standing still too long, unable to see, cognitive dysfunction so bad that he forgets his name or where he is. In short he is in so much pain and lack of cognition he has no life to speak of. He was 8 when he was rushed to hospital; no scans were performed and not many investigations. They ran through his history and when it became apparent that he had a virus of some sort, they just gave a diagnosis of somatisation/CFS.

After two years of Cognitive Behaviour Therapy, where I was put under immense scrutiny and pressure for my son to recover and my son was told no one will take any notice of his symptoms, my son became withdrawn. I would say after his treatment by ill-informed medical professionals, his strength of character is immense, because he took his treatment on the chin. He never spoke of his increasing pain; he learnt to cope with it. This we found out later should have been taken seriously, and will possibly have lifelong consequences as it was a warning of things going wrong. ME, by the World Health Organisation is recognised as neurological disorder. Step back and think how this must feel for both him and me.

Our restraint and dignity I would suggest, far outweighs the behaviour of the doctors and researchers, SMC, government, MRC and the BBC that insist this is more a matter of mind over body.

He also had Graded Exercise Therapy, which to me in the beginning made perfect sense; you just have to gently get your body back into the swing of life, like any other illness.  But if you read up on sepsis, meningitis, diabetes, the symptoms and the way the heart is involved are connected. Not all illness give way to recovery. Your information does form doctors', educators', social workers' and people in general's understanding and directly influences people’s perceptions, as shown in the links you gave me.

We later found out that he had post orthostatic tachycardia syndrome (PoTS), undiagnosed from the very start and one of the 1986 ME diagnosis criteria by Dr Ramsey? Yet many doctors do not look out for or understand this when suspecting ME/CFS. However, this is not on the Oxford Criteria. If you look up PoTS on the NHS web site choices, you will find a connection to CFS. This is never mentioned by Professor Crawley? NICE guidelines also stipulate a heart monitor should be worn when exercising, I do not think Professor Crawley does this either and I would say this is a worry.

We also found my son was a Coeliac suffer, his reading for the protein was very high and as yet is not coming down enough to be measured on his blood tests. This would have done great harm to my son’s body and he has now grown 6cm in the last couple of months, showing his body was effectively being starved of nutrients.

To complain about these misdiagnoses and our treatment; I have been informed would put me under threat, mothers are accused of Munchausen by proxy. We cannot learn from these types of errors if we do not take account of mistakes. Reading the protocol of the FitnetNHS trial, and listening to Professor Crawley, it is hardly surprising mothers get blamed for their children not recovering. I would say that people misunderstand the seriousness and disability of ME. Over 200 families have gone through this with very sick children, who have been accused, and none have been found guilty. Yet no one ever looks into the behaviour of professionals as to why this happens to innocent families fighting against a chronic illness. Social services or education authorities are left making decisions with not all facts being put forward on the media of the medical understanding, and this why I mentioned Karina Hansen and Sophia. The public should be made aware of this.

Since Professor Crawley made her rounds on the BBC media circuit, many mothers have been harassed to send their children to school and several have been reported to the social services, this I feel is a direct response to your biased media coverage. If you look on the internet for information from the BBC it is clear what message you send out. The reporting is one sided and the truth scilenced.

As a mother you are not safeguarded and it would seem have no rights above the Doctors, educators, social services concerns over safeguarding your child, therefore no balance of facts. If the Doctor you are under does not fully understand your child with ME, and they write to the school stating your child can attend school for 5 hours a week, you as a parent have to comply. If you do not send your child to school for those five hours a week on a regular basis; as happens with children that are fighting this illness, then the school have a duty of care to inform the attendance officer no matter how they may feel about that child’s health or wellbeing. The attendance officer then brings in the school nurse and the social services and because of the misinformation and wrong impression of ME, they then put the child on a protection order. This whole process can take as little as 30 days. The police can break your door down and forcefully take your child away, without you being aware of any safeguarding issue.

Even if the mother has been proven not guilty by a court of law, most of the time the child is harmed by the process and foster careers not understanding this chronic illness, and in some cases they never recover. No one, it would seem, cares to look through the cases to find if the same doctors are making these mistakes many times with one particular illness. Neither do they review cases and make sure the child recovers, with some children getting lost in the system forever.

I hope the above information makes it clear why you should take the time to fully investigate, and that you have the facts, and I would respectfully ask you to make amends. To give unbiased and a balance to the behavioural interventions that you have promoted, and provide the same platform you offered Professor Crawley to those that have worked hard, and tirelessly to provide grounded and provable evidence of the biomedical problems and aetiology that is now emerging.

More importantly allow people who suffer a voice and not ridicule.

Kind Regards

Tina Rodwell