NICE have delayed again the publishing of the new Guidelines for those with ME or CFS and here is my reply.

Dear NICE

Can you confirm that all of the committee members had signed the guidelines off.

If this information is correct, could you give a full and transparent reason as to why you have delayed for the third time, the publication of the ME guidelines.

That by your own manual and procedures that state that you can only delay a guideline publication once.

That NICE is in breach of its own due process as mandated in its third delay.

I believe that this action of delaying for a third time, now warrants a Judicial Review and with transparency so that the public can be assured the correct protocols are followed.

That the NHS uphold their 7 core principles and that the Government uphold their duty to keep UK public safe.

That you have knowingly kept those medical professionals, researchers, patients, and advocates in the dark and allowed some chosen people, who have vested interests in CBT and GET to have secret meetings to influence the outcome of the guidelines.

I have been advocating and giving a voice to children and young people with long term chronic and rare diseases, for 6 years now. In that time, I have witnessed the trauma that medical gaslighting has done on children, young people, and their families, when they go through inappropriate ME/cfs services.

I have seen the confusion that the PACE trial and the teaching that ME/cfs is an illness belief. I have seen the suffering of the idea that pushing the patient is the method to recovery, through CBT and GET fail young people so badly, that some have lost their lives, while others are left house, and bed bound for the rest of theirs.

There has been a steady increase in that trauma, with a decrease in the understanding that ME is biological in nature. Where once there was an understanding of complex diseases, diseases with ongoing inflammation, autoimmune and infection. That understanding has been covered up with the NICE guidelines of 2007 and the pathways that they created.

CFS centers do not, will not or cannot diagnose ME, Lymes, EDS, Mast Cell, POTS, post viral, autoimmune diseases that can and do show in those with ME.

They will not understand and refuse to acknowledge the complexities of the lived experience due to their irrational belief in the only treatment they support, and this is causing a lack of research funding into biomedical reactions, which result in ME and now Long covid.

I have seen the fabrication of mental illnesses used on those complex and perplexing conditions that has been allowed to continue on those patients and it is shocking to have received the news today that another delay has been allowed to happen due to discrepancies between fact and their fiction.

NICE state that unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/cfs may not get the care and help they need. What we and NICE have found out through the last three years, is that ME and cfs patients do not receive the due care, understanding, treatment or testing that everyone else does, this is discrimination.

Trauma is caused by professionals when they do not listen to the lived experience, are not made to take consideration of all the evidence and do not consider what they do is harmful. Even when legislation and law dictate, they are able to abuse their power over the system designed to support good health and the safety of the patient. We see violations of:

 

Do no harm

Duty of Candor

No decisions about me without me

Full and informed consent with all the facts known about impacts of treatment.

 

None of the trauma is logged by the CBT and GET professionals, neither are the suicides or falsely accused mothers of fabricating or inducing Illness. Mothers who have been forced to push treatment on their children against their better judgment, because those that advocate CBT and GET accuse them and that of their children of not trying hard enough and have been shamefully treated.

There is no accountability or Duty of Candor and therefore no improvements have been made in cfs centers, due to the control of those professionals that have forced CBT and GET as treatments and have continued to research these treatments against all common sense and science.  

NICE guideline is there to enable the public to gain information, and support Drs to make the right choices on treatment, it cannot be made to go against its own findings. It must not be controlled by one small subgroup of medical professionals, that are known to misinform the public, is more vocal and have more clout than those that treat in a more holistic and informed by science and the lived experience of the patient.

NICE at the engagement meeting with regards to ME gave promises and assurances, if kept would have stopped avoidable deaths, children taken into care or going through the child protection system, medical cruelties and harms, Social Services mismanagement of children and young people with ME, Educational SEND disputes, discrimination within the Family Courts and the confusion now upon us in this covid-19 epidemic.

Viruses were once understood and their devastation they caused accepted and worked with knowledge and not against it. Yet in 2021 they are misrepresented as an inability of the patient to push through the pain, causing discrimination. Because of that discrimination and biases of beliefs with treatments such as CBT and GET, NICE have indirectly with their 2007 guidelines, supported by their inaction suffering on the most vulnerable and allowed that to continue over the last 3 years. NICE has a Duty of Candor that needs to be upheld in this making and delay of the ME guidelines.

NICE must keep in mind when they are building guidelines the obligations under law and regulations that prohibit discrimination on the basis of disability, race, color, national origin, age, sex and exercise of conscience. When they allow delays and bias opinion to influence when and how the guidelines are formed and released causing unrecognised suffering.

Causing disparity between your guidelines with such conditions of equal disability - such as between AIDS and ME should never happen. Sadly, with ME their lives on a day-to-day basis are more impacted upon, not least due to the attitude with which they are seen by the medical profession. We should look back at the journey AIDS had and understand the reasons why having psychological input can be so problematic and discriminatory.

We should have learnt our lessons of how this holds back our understanding as it did with cancer and smoking related diseases. Researched as personality types, connecting personality and health by Professor Hans Eysenck with questionable data using the same arguments as we see with all the CBT trials now coming out. The cot death scandal, shaking baby and Roy Meadows Salt and Sugar fiasco. The PACE trial and those that have published, but not robust peer reviewed papers, need to understand that their behavior will not be tolerated and do not fit into the NHS constitution of the 7 core principles.

The inaction of NICE to take down bad behavior by the Psychological lobbyists/Activists, is directly or indirectly discriminating against those doctors who do know about post viral ME, the destructiveness of pushing into PEM so deep there is no hope of recovery. The difference between cfs and the other complex conditions that go with infections. You have shut them out for far too long, causing mayhem in the health and social care system by your inaction.

The lack of understanding of ME/cfs has stopped us learning how and why the body fails and that is down to the cruelties and harms not being recognised or recorded and the patients lived experienced pushed to one side. Patient engagement means that everyone needs to record those cruelties or harms in the red flag system that is there for healthcare. Those cruelties and harms need to be understood and acted upon and Duty of Candor implemented.

NICE now must first acknowledge the harm and release the signed off guidelines on that understanding. You have been made aware over decades of the issues I have raised. A small minority that has an over big command over NICE have caused a lack of understanding and a way forward.

It needs to be made clear this will not be tolerated nor allowed to continue as point 6 of the NHS core principles states, “The NHS is accountable to the public, communities and patients that is serves” and the public and patients have spoken and demanded change, biomedical research and appropriate treatment which is in line with the biomedical research already available.

 

Kind Regards

On behalf of those silenced children, young people and their families over the decades.

Tina Rodwell

 

A Tilly Moment while living with ME - Sitting On A Bunch Of Keys

ME is Myalgic Encephalomyelitis

PEM is Post Exertional Malaise

I had packed the car ready for the two-hour journey for my son to have treatment. I have 101 things to say about that but will leave that for another day. Going anywhere for my son Angus, is like getting ready for the Olympics, so much training has to be done in order to do an event and should be an Paralympics sport as a ME triathlon event. Event 1: getting out of bed Event 2: dressing Event 3: travelling in wheelchair of a distance of 100 meters, not self-propelled but pushed.

It sounds far-fetched and when I explain about this to any medical professional, it is met with utter disbelief and lack of understanding. How can simple movements; innocuous as they are for any ill person, have such detrimental effects that it takes weeks, months or never to recover from. The science is there but is complex and too much money is to be made from “Cognitive Therapies” to ever look at the truth.

The only problem with those who have ME entering an event is that they may never recover from even the training. You think I am over exaggerating, sadly I’m not. Look at the overtraining of the Olympians and you will find ME symptoms. In fact, there was a paper that showed the similarities, there is also a paper that explains PEM when doing a hand gripping test. Fluff, I broke my promise - to save the science for another day. Back to the event of the Key sitting.

Angus had struggled to wake that morning and this alone in enough to make the next week a bad week for him. He knew the importance of the tests and treatments so tried not to moan too much. I had to help him get dressed; he finds this so hard to accept. For any 14-year-old privacy and dignity are keenly felt and how do you honour that when he is so incapacitated on some days? The physical exhaustion was taking his ability to be mentally alert and is the first sign of him reaching the over training state and I knew we were in for a quiet drive. My heart sank to my boots and it took all I had to pull those bootstraps up. But pull them up I did, with my stiff upper lip.

You know that dreaded question about who you would invite to a dinner party - alive or dead, well very often at these times I think a lot about this. Among my invited guests would be an alert Angus. You see he can, at the right time of day and when he is not suffering PEM, be full of conversation, asking questions that only a quantum physicist could answer; like what Dark Matter is and how did the big bang theory start. I normally retort with who wrote the big bang theory for the TV series. Only I have to quickly go on my phone and find out their names as I’m not good at remembering names “Chuck Lorre and Bill Prady”, I respond. We both giggle; which is not good for Angus and this pushes him deeper into PEM, due to laughing being like a physical workout and his aerobic capacity reached. There is research to prove that laughing can be part of your exercise regime – I kid you not.

I have my own way of explaining complex matters which Angus finds both funny and exasperating. I tend to break them down to my level of thinking and use everyday objects I’m familiar with. So here goes for a Tilly Moment explanation of the big bang theory (not the program).

In a dark room, void of all matter I flack my duster which causes a bang - we have particles and static electric - the beginning of life starts. It takes a few minutes for his stunned silence to explode with his indignation of “you cannot be serious mum”. The joy of it has to be experienced at least once in your life; seeing someone so depleted in ability and suffering, to still be able to laugh and put a good forceful counter argument together, of how wrong you are, is so delicious. However, the guilt after the event is very hard to cope with and it is Angus that then pulls my bootstraps up and reminds me, it is not my fault.  

On our 2-hour journey we normally stop for something to eat, another simple pleasure that most people take for granted.  A break from the movement, cars flashing by and the rolling countryside that makes it so difficult for his body and brain to cope. He can’t get out of the car so a drive through is the only option. Those few minutes have become precious to me, a few seconds of normal life and to glimpse at the growing understanding of the complexity of the life my son now has. I don’t think anyone could be prouder than I am on these journeys, even if he won the Olympics or world events, I don’t think I would feel the way I do on those few precious moments. To know and truly appreciate the complexities of ME, you have to live through it to understand why I am so dam proud of him and why this young lad is my ME hero of epic proportions.

When we arrive at the centre, we all eagerly await for him to recover enough from the journey for his banter to start. His unfolding personality and his humour that brightens up their day is another rare joy that we want more of. We can all see the incremental improvements and with just a blood test to go we then make our way out to start the journey back home. This is one of the handful of times my son in the last 7 years has had outside his home. There are no charities that showcase his illness by sending him to swim with dolphins or to theme parks. No personalities that want to go on catch phrase to support my son in any way. He has no elevating carefree times, just an expanse of time like ground hog day, where the only thing that changes is his age - going from child to young man in the same state.

Navigating the doors with his wheelchair we treat the journey out of the building and into the car like a slalom, which I am happy to report I am getting better at. Time trials next. He has to sit for a few minutes before he attempts to get in the car; because we have laughed so much his body goes into a whirlwind of refusing to do anything but keeping his world dizzy and crippled with chest pain.

While he summons up the determination to move again, I put the bags in the backseat and busy myself so he can take the time he needs. I have to wait for him to move trying to engage with him at this point puts him under pressure to do things against his bodies better judgment and causes more problems later on. When he has got himself in the seat of the car, I pack and lift the wheelchair in the back and tie it down. As yet I have been unable to get a blue badge; again for 101 reasons but mostly because just trying to get proper healthcare for him is like taking a Mensa test while doing downhill slalom at speed. I have found I have needed a fully operational office and know a system that is as fragmented and hidden as Dark Matter. Getting a wheelchair in a car in a normal parking spot is difficult, two herniated discs prove that.  I then proceed to find the keys that I have put in the endless pit of doom I call my handbag. No keys. I know I’ll empty it onto the backseat of the car. I find everything I have lost in the last 6+ months much to the amusement of Angus. But no car Keys. It’s not as though they are easy to lose either for the love of plucked feathers where are they.  I must have put them on the folded seat in the back of the car while putting wheelchair in? No keys near the wheelchair? No keys, In the bags, they may have dropped in there? No keys.

We start to giggle as I look all around embarrassed, in and out of the car using my phone as a torch. Taking my own advice that I give to others; I start to think and visualise what I had done since unlocking the car. Where did I put the keys? Did I definitely unlock the car; self-doubt creeps in. Could I have left them in the building? By this time, we had everyone looking for them. I eventually asked Angus to get out of the seat so that I could look under the seat to see; in a vein hope, if I had dropped them there. Knowing this would cause him more physical problems I apologised and felt so guilty. However, there on the seat were the keys. “How could you not feel them” I asked? It’s not like there was just one key, there was a pile of them. We giggled about his insensitive behind and remembered when he forgot the chocolate, I had brought him one day that he sat on and which melted and made such a mess.

The elation of the everyday is a short-lived joy but one that I hope, in time, we will have more of without the PEM. For readers that do not know the ramifications of ME and PEM probably do not appreciate what a day out like this means to me and Angus. Angus has been 95% bedbound for the last 6 years and ill and house bound for 7. The next morning, he could not wake until 11.30 and it took him until 1.30 to be able to speak to me. His lips looked as if he had gone in the dessert with no water for days and the pain was painfully written on his face. He asked me to leave him, to let him recover he needs solitude, quiet and no interaction.

Living through these times is the hardest to cope with for me. This is compounded knowing what my other two children were doing at his age. For Angus like all athletes it is part of his discipline and the price he has to pay. Unlike athletes he has no one patting him on the back saying he is amazing.  The feeling of inadequacy deepens for him. His bodies inability to live frustrates him beyond any endurance training.

This enforced solitude hurts beyond any words I have found or any analogies to equate it to. It takes all our strength of character to get through these dark times and he manages it better than me.

It can take weeks or months for his body to ease the grip it has on him and we both know from experience it may never come back. With the new treatment it fades in just over 2 weeks and back to the normal pain and difficulties that most of us would find intolerable, that he has had to learnt to accept as his new normal. We get ready for the next outing and one day; soon I hope, we will be going out to something he would like to do instead of doing something that he needs to do.

Like the opening of those glorious spring flowers now popping their heads out in the bitter wind, he starts his conversations and my heart leaps with uncontrolled joy on the inside and a loving smile on the outside.

The banter of a mother and son can be heard once again. The subject of my inability to keep safe hold of keys and his inability to feel those keys while sitting on them becomes a verbal tug of war and one of those family anecdotes you keep hold of and love the retelling of and long may that continue.

 

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.

The Care and Quality Commission

The care and Quality Commission asked if anyone had regretted not complaining and went on Twitter.

https://twitter.com/CareQualityComm/status/1067697100685635584

Engagementandinvolvement@cqc.org.uk

I had 101 things to say but here is my reply:

I wished I could complain but the system is stacked against ME

I am a mother of a 13-year-old boy who has severe ME. There are more systems wrong with his body than I can count, and his reality is denied.

He has been bed/housebound from the age of 9, ill from the age of 8. He is one of those people who could never sit still, his illness has not changed his personality or his need to climb and fly, his body has severely clipped his wings though.

ME is a political illness with treatment of CBT and GET attached strongly to the insurance industry and Department of Work and Pensions and therefore the governments over the last 3 decades.

No research grants from the GMC into the biological cause of ME is awarded and those that suffer are left to find the unbelievable history of this illness themselves. With all known helpful treatments denied to the patients. Even though I have a good grasp of this illness I find it difficult to ask for help from my GP. This is because of the misinformation being given on how to diagnose ME and the cause.

Furthermore, the wrong treatments advocated by those that refuse the evidence of the biomedical and physiological problems of ME, with treatments that are put forward as a cure or help with symptoms make my child worse. I do complain to deaf ears due to empire and self-interest.

This system of “protect some professionals at all cost”, causes untold damage to very young children like my son, with many silently nursing professional abuse of Fabricating and Inducing Mental Illnesses on young children that triggers PTSD. To deny a child’s truth is unforgivable. The history over 3 decades tells their story, openly shared on Twitter, YouTube and social media, in government documents and the general media, like the 3 wise monkeys’ organisations such as yourselves see, hear and do not speak of the evil that is done to our 25,000 children. Happy to gaslight us as women and as mothers with mass hysteria tag that hides the ME, EDS, autoimmune epidemic, thyroid and heart attacks.

Mothers like me are aggressively targeted as scapegoats and accused of Fabricating and Inducing Illness (FII), our family courts are given false information about this illness by those that believe the Camelford Water incidence was a form of mass hysteria and caused no damage, oil spills in Scotland had no harmful effect and were greatly helped by not being given to the press - thus avoiding mass hysteria. Women are gaslighted about their pain and if they are a mother it is naturally assumed; if their child remains ill - it must be down to them, professionals are always right?

You could not make up the Camelford water incident and the illogical reasoning was addressed? Oh no the person who put forward the illogical was promoted and is given a review of the mental health of our county? what does that say about our healthcare and the mental health care in our country? Forensic biomarkers are there and respiratory, liver damage along with a decrease in immunity, increase of cancer and higher levels of toxins, yet we pay no attention to the human cost. Blame it on mass hysteria.

When I complained about the hypocrisy to the GMC so they may look into the trials, treatments and history that have led to this impossible situation, they said they would do nothing. However, I could complain about the individual doctors who had misdiagnosed my son and given him inappropriate treatments. I do have a strong case but for 2 very important reasons I do not complain, but openly speak of the truth.

1.       With misinformation and the history of denial of the facts about ME. Along with underline political agenda, a complaint would put my son under threat of being taken away from his loving family. Some professionals will stop at nothing to hide the truth, the harm to children unrecognised. They try to get good doctors stuck off. The GMC are aware of the situation with some Doctors being sent to them 28 times.

2.       Why should I complain about well-intentioned doctors who have been misinformed about this illness and not taught how to diagnose or treat properly? CQC, NICE, NHS England, Government are responsible and are aware, so nothing will change until you do. 

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

Time to hear the voice of mother and more importantly the child.

Family courts and family law in England and Wales are to make things clearer?

How is this going to work?

Will the voice of those that matter be heard? That is the young person, their prime carer – mostly their mother and the family unit. Surely their voices are more important than any others? Yet we never hear those voices or rarely and mostly only when devastation has caused outrage.

Is it about time that changed?

What studies are there that look at the mother’s instinct of their child’s health and wellbeing and how correct are they? 

How many times have hospitals got it wrong and the mother right? I would suspect that this is never noted down. This I would suggest is where we go wrong. Not getting to the truth of a situation leads to misinformation and the same mistakes being made.

How can we be sure we know all the facts and have balance if the family, mother or child's voice is never heard. It is only when the child is 18 that their voices can be heard and by then it is too late to make amends for the damage done.

Now consider - how much research has been put into how mothers negatively impact on their child/children? This is all done from a very vacant and technical viewpoint that has nothing to do with being human, sensitive or empathetic.

One illness that for decades has not been listened to is Myalgic Encephalomyelitis (ME) the history is filled with academia and bizarre beliefs like "malleable brain" and "Neuroplasticity". If these theories worked then eating chocolate would always give you a happy buzz or you would never eat it as you have trained you brain and conserve your hips, brain training games would make me a genius and our educational system would be the finest in the world. However, we are more complicated and have amazing ecosystems and cells that entwine with such delicate complexities to untangle will take more than just saying I am happy and making life better. 

Why is it that one illness taken over by those that think they can control our DNA, Cells by denying the reality of the patient and why did the NHS fund such a trial 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3049137/#__sec6title

To view a mother/parent in such a manor when their child has a disease that is disruptive and puts all of their bodies systems out of kilter... well words quite frankly fail.

How can you advertise a trial as a treatment that most will recover at 6 months in the first place and no authority think this is wrong? Trials are set up to prove or disprove. All of the trials on children with ME do not record harm, do not give heart rate monitors to make sure children keep under the anaerobic threshold. Those that research on children with this devastating disease cannot or will not explain they cycle of Post exertional malaise (PEM) and why even doing a small dot-to-dot can have the same response as walking a mile. Why convalescent rest is needed after activity and in a PEM state and how or why this happens. They do not track the PEM cycle and they do not make if the child has more time with feet on the floor time.

For a researcher not to know why this is important in ME is unforgivable.

To call our children MUPPETS is beyond insensitive and yet they can openly do so, who is there to stop them?

On their flawed science so the courts make their decisions about the parents behavior. The authorities are OK with this?

The difference between the lived reality and that of academia is acutely astounding. If there were studies into how the mother’s instinct makes a positive impact on the outcome of long-term conditions, or acute ones, I wonder what we would find. How many deaths would be avoided if the mothers voice was acted upon with more respect and urgency?

Sir John O’Hare QC who headed up the 14-year-old inquiry into avoidable deaths of young children, in the Royal Belfast Hospital said (I will paraphrase for brevity) “there was an “indefensible” culture in which parents were “deliberately mislead” by doctors and health trust chef’s intent on “avoiding scrutiny” and protecting their own reputations.”

How is there going to be clarity within the family courts, when no one listens to those on the receiving end of bad practice or false allegations?

Does the public understand the position parents are in with the court restrictions, when they are accused of Fabricating and Inducing Illness (FII), even when proven innocent? How does that position impact on parents when they are trying to pull together professionals, to get the right treatment for their child.

I was recently told by the GMC that there is a differing opinion on a condition my son suffers from. Healthcare should not be about politics or opinion, but on individual medical history and research along with no more harm and probability. No one said healthcare was easy. 

Avoidable suffering and deaths are happening to children throughout the healthcare system and most are covered up with accusing the parents of FII, belittling or gaslighting them. As Sir John O’Hare QC suggests; a culture has been allowed to build up.

What are the courts going to do with the misunderstanding over complex cases and where fraudulent or flawed research give the wrong treatments or advocates procedures that are causing harm or death? 

Covered by clever and manipulation by academia and not balance of all facts of known experiences  hampers diagnosis, treatment and informed consent. This also gives both professionals, barristers, lawyers and courts along with the public the wrong idea about FII or the relationship of a mother to their child, and of a child to their mother. This normal bond of care is being broken for gain or an agenda well meaning as it might be. The voice and experience of the parents are not heard and therefore no balance. How do we get balance back?

There is no common law duty of care to parents, this has I believe, led to the explosion of FII. FII is used as a method of “avoiding scrutiny”. Have courts; trying to protect children, now becoming a weapon used against parents?

The mounting case of parents with children that have hidden illnesses accused of FII:

Chronic Fatigue Syndrome (CFS) and the PACE trial is a battle of establishment Goliath against a severe hidden illness. Over 200 parents accused of FII (again mostly mothers but not exclusively) none have been found guilty. You just need to look at the Tymes Trust webpage to see a condition that sucks the life out of our children. The Tymes Trust have been battling against an opinion without foundation for decades now. Many children would have been lost if it were not for the Tymes Trust tireless efforts.

CFS is a controversial name brought in to mask Dr Ramsay defined ME.  

The main telling sign of ME is that symptoms are exasperated by any form of thinking, day to day task or emotion - that can be getting excited and laughing as much as feeling confined by the lack of energy. Basically put, anything that uses energy takes it out on the body, similar to diabetes.

A misconception that has been heavily played upon, is that avoidance of exercise was the problem. When this did not stick, it was avoidance of living or depression. Then came the deconditioning theory. You cannot image the damage this misconception has caused a whole plethora of illnesses. This has enabled many to Gaslight a whole community of the invisible illnesses/disability.

The truth is; as anyone who cares for a person with ME knows, there is a cycle that cannot be replicated by just an emotional outburst of unwillingness ­- of not wanting to engage with life, it’s called PEM, and is how you can diagnose ME. Ramsay explained that ME had an alarming tendency to become chronic when a small amount of energy is consumed and which takes a prolonged period to regain some energy back. This is now being taken very seriously in research terms, but it has taken from 1986 to now, to be seen as the path of discovery.

The PACE trial in 2011 set out to prove along with the DWP and the MRC, that this condition was treatable with Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), this trial data was not released openly or freely, as they said they would. Instead the community had to force the data to be released while being charged as vexatious.  Appalling accusations freely heaped on those that suffer, by the media and recently Executive Chair of the MRC Professor Fiona Watt.

The data from the PACE trial now reanalysed by many, has been shown to be steeped in flawed methodology. Even though the harm of those treatments are in plain sight in rooms all around the UK, they and their suffering are dismissed.

To cover this appauling use of research children are being made to pay the price. Further research promised to show this is still a valid treatment and so the DWP and MRC can hold their 

Ehlers-Danlos Syndrome (EDS)

This is a genetic condition difficult to diagnose due to opinion, lack of understanding and funding into research. Again, doctors are targeted and sent to the GMC as with ME if they try to help with differing treatments and stand up for those that suffer. EDS has never really been given the attention it deserves, just like ME. Children can end up being tube fed and put in mental hospitals due to lack of understanding.

We do not know if vEDS is as rare as we are told, but we do know life expectancy is shorted due to vascular rupture, with median life span of 48 years. though this does and can happen at any time as even young people die as a result of a rupture. Why are courts ready to hear that parents are saying symptoms are worse than they are and keep taking children away from loving homes? Why do we not keep a track on their progress? These children are lost and forgotten in the system unless the mothers/parents fight hard and long battles. Simply trying to get tests can leave parents under threats as doctors are being taught to look out for these conditions and mother fabricating the complexity and severity of them. What hope of a diagnosis is there?

Mast Cell Syndrome (MCAS)

This is an immunological condition with near-anaphylaxis or anaphylaxis attaches. Why are so many of these conditions put down to anxiety. Mast Cell inappropriately release chemical mediators which result in a range of chronic symptoms and is rarely looked at. Again, this condition would take endless visits to doctors to get a diagnosis. There is a blood test looking for Tryptase; a protein that is usually elevated. Ultimately a bone marrow biopsy is the definitive test. Hopeful one day as with celiac this will become just a blood screening that is easy to do. Unfortunately, the symptoms are just linked in with mental health issues and the new Improved Access to Psychological Therapies (IAPT) so now parents have a bigger problem.

Post Orthostatic Tachycardia Syndrome (POTS)

Again, this is complex, and little understood to how prevalent this condition is and has been dismissed as a condition of little significance. The research would suggest otherwise. Thought to be anxiety driven it is now proving that it brings on anxiety due to the change of heart rate and blood pressure, with adrenalin surges. Mothers are again suspected of saying the condition is worse than it is, but when you consider the symptoms are so vast and some mimic heart attack, could you really blame mothers for their concern?

Lymes

This is caused by a tick bite and there are many symptoms with many reports of problems throughout the body. Although there is a blood test, this is very rarely asked for, and is known to be ineffective in many cases.

We should have learnt lesson from the Cot deaths and shaken baby syndrome

These are now recognised as having many causes and why babies are given Vitamin K. If these cases had gone unchallenged, we would still be blaming the parent, mostly it has to be said the mother.

How many children are caused undue suffering or die in care of these complex and intertwined conditions. How many parents unprotected by laws and are seen as insignificant collateral damage that protects children?

Are courts and research doing more harm due to lack of balance, when the voices of those that count the most are silenced.

It is now time to hear the voices that give the balance back to society, the voice of mother and more importantly the child. Will this ever happen?