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. 

My Open reply to the GMC regarding Dr Myhill's complaint.

On the 9th February 2018 I sent a letter supporting Dr Myhill's complaint to the GMC.

I received a standard reply that made no sense and here is my open reply back to them. A bit long but it is a big issue.

Dear Sir Terence Stephenson

Nuffield Professor of Child Health at University College London

Chair of GMC

Thank you for your considered response from Ian McCann, and I am glad you took your time to carefully review our concerns as there are 25,000 children’s lives at the heart of this long drawn out matter.

I can assure you I am not disappointed, neither am I surprised by your inaction to my concerns, nor was the 250,000 adults or the parents of the 25,000 children in the UK, who deal with this condition on a daily basis. All those around the world have long anticipated your reply. I guess, it was just a step we knew we had to go through. Furthermore, I am very used to the standard reply you gave me and that speaks volumes.

I am an patient Ambassador for Children with ME as part of #MedLearn, which is about shared learning between senior healthcare professionals, patients and carers’, I am one of the stakeholders on the NICE guidelines and am on the Community Engagement Partnership in my area, as well as a mother with a son, who has suffered by the training given to our local medical staff, by your listed trainers.

I take my roles very seriously and when I see harm being done, I report it and support those who would like to help make a better NHS, based on good governance, mutual respect, and a learning pathway that is open and honest.

There are over 25,000 very good reasons why I do this.

In my roles I read many papers and talk to many researchers and doctors all over the world. ME is not an opinion, a personal view or caused by psychosomatic reasons. ME is a very complex, multi system, debilitating and life-threatening condition, of which the research and understanding is being held back by some of your training members. Dr Ramsay tried to defend ME against fabricating and inducing mental illness on those that suffer ME, sadly he failed.

Can you confirm that you are not going to make those on your register; whether they be a doctor, on your special register or trainer to uphold their duty of candour.

·         Speak to a patient, or those close to them, as soon as possible after they realise something has gone wrong with their care.

·         Apologise to the patient – explain what happened, what can be done if they have suffered harm and what will be done to prevent someone else being harmed in the future.

·         Use their professional judgement about whether to inform patients about near misses – incidents which have the potential to result in harm but do not.

·         Report errors at an early stage so that lessons can be learned quickly, and patients are protected from harm in the future.

·         Not try to prevent colleagues or former colleagues from raising concerns about patient safety. Managers must make sure that if people do raise concerns they are protected from unfair criticism, detriment or dismissal. 

Dr Ramsay in 1986 said that this illness has an “alarming tendency to become chronic”, so we have always known that harm can be done to patients who are not listened to.

Dr Wakefield; who you struck off your register, the GMC stated he “abused his position of trust when conducting research” his “dishonest irresponsible and showed callous disregard for the distress and pain” cased to children. So why in your letter do you state to me, that you will not be taking the matter any further at this time? Who are you protecting? It is not our children. Please explain your actions and your obvious misinformation you gave me. You also quoted at me that, “An investigation can only be opened if the concerns raised are so serious that the doctor’s fitness to practise medicine is called into question.” Thousands of innocent patients are waiting for this clarification of why the difference between Wakefield and PACE trial authors, Sir Wessely, Crawley, Glaser, Parker.

It would seem to me you have not protected this group of patients, some of which are very young and vulnerable children, and I feel breaches the Ill-treatment and wilful neglect offences Act 2015?

You have enough evidence historically, through the parliament questions and Westminster debates along with children who are no longer able to live life, other than in an extremely constricted way and in constant pain, neglected by all medical professionals, due to the lack of understanding promoted by the PACE trial authors and supporters. 25,000 good reasons why the status quo cannot be allowed to continue. You need to give a full account of your inactions to the public.

Sir Robert Frances QC “Every time a patient or a colleague is deceived, intentionally or otherwise, public confidence in the service can be threatened”. I would suggest in this matter it has gone.

False allegations are thrown at parents with children that have hidden disability or chronic conditions which ME is one. It co exists with, EDS, VEDS, POTS, Mast Cell Activation, Celiac due to the misinformation issued by trainers on your register, these children are wilfully neglected. This is caused by medical teaching by your approved trainers.

This causes immense physical and emotional damage to the whole family, not just the young patient, and lasts a life time, like any form of abuse.

FII is being used as a form of abusive control, a weapon in two ways. Firstly, to make parents do what those that have full control of ME/CFS recommends, including pushing children on research trials and secondly when things go wrong to blame the parent, and hide their misconduct/misdiagnosis/ lack of understanding.

When parents are innocent, their innocence and what went wrong is never looked into publicly, due to the secretive nature that has been allowed to build up around FII; even when the parents have been publicly announced as abusers. The harms caused by those on your register as trainers, train medical staff in their beliefs that goes against all the biomedical research, as I mentioned in my complaint and this is growing.

Giving the wrong treatment to a large group of patients is against duty of candour, not reporting known harms is against the Shipman report, and not learning from historical mistakes is against humanity and informed consent.

Am I given to understand that you think as an organisation you are above all three?

Who are you protecting? It is not our children and you are showing callous disregard for the health and wellbeing of over 25,000 children around the United Kingdom.

I am aware you have connections with Bristol University and Oxford, so you will be aware of the historical problems of over 30 years of pushing CBT as a treatment, with no obvious rewards to patients. With nearly every trial being flawed on many levels.

You state your Role is: to oversee medical education and advise on good medical practice. So therefore, a fitness to be a trainer and to educate others, is within your domain of governance.

You are a public body, so therefore it is your public duty to protect the medical staff on your register from being misinformed and to stop bad practice by those that educate in their specialist field.

You are there to protect the public from harm? Since 2004 patients and some researchers along with doctors, have been talking of systemic harm with treatment of CBT and GET on those that have ME/CFS. That is 14 years and still you do not listen.

CBT is being rolled out for all conditions and is part of the IAPT, so this truth needs to come out as the country pays for this wrong approach in two ways – misdiagnosis leading to harm/death as patient’s symptoms are not being noted as important and financially when therapies through their own research shows that CBT has no positive effects, therefore a waste of public funds.

It is my opinion you have failed in your duty of candour. You are allowing further harm of those that suffer and of newly diagnosed to go through the same rehabilitation nightmare. You have been informed of harm, biomedical research historically and new, has consistently proven dysregulation in the many systems and the harm caused by a two-day CPET test. Yet you have chosen not to take action, therefore the known abuse continues. You cannot call it different opinion? You are now a party to that abuse, by your inaction of governance.

could you please explain the following to me -

When I looked on your register I find that Simon Charles Wessley is Reg no 2724740 is an approved trainer by yourselves. Please confirm this is the same Sir Simon Wessley with many accounts of his medical gaslighting towards patients verbal and written, carers, Doctors, advocates, journalists, professors and reviewers. His views are biased to the point of… well words fail. When you look at his fixation on Mass Hysteria with his paper on the Camelford water poisoning, Gulf War Syndrome, I am perplexed that he is still training medical staff. VEDS (life expectancy of 43 years and goes undiagnosed and allowed to be called MUPPETS), Lymes and ME are not any form of hysteria, they are physical conditions interlinked and with little biomedical researched done due to the views of a few. If these physical conditions cannot be picked up by biosocial lobby, there is something very wrong with our teaching of medicine. Tick bites and associated known illness along with shingles, have been around for many years, and their complex affects on the body known. Therefore, it is absurd not to look for causes and find facts of ME and just treat with increased activity. Even more so when the cardinal diagnostic difference in this illness is that the body starts to shut down 48 hours or so after any form of activity and not just physical activity, I go back to Dr Ramsay among others.

On your register is Michael Christopher Sharpe 2673545 Please let me know if this is the same Professor Sharpe who was part of the PACE trial. Recently his behaviour has been in the public and Parliaments eye with regards to the email sent to Carol Monaghan MP.  His disputed work is the one quoted as evidence based and forms the opinion, and I would suggest education of the medical profession as a whole. Professor Sharpe had four papers as evidence for the Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline 2006, I wonder who reviewed these papers. His methodology has been again questioned in the awful named trial of “Fatiogo” and on the NICE guidelines list of possible papers, so the problem perpetuates. There should have been a halt to his ability to do research, as you did with Wakefield. Public confidence is being lost in science, when the GMC do not administer governance or balanced discipline.

Esther Crawley 3545946 who is the lead researcher with the biggest grant in the UK for ME/CFS, that leads physical trials on vulnerable children, with little to no understating of co-existing conditions like POTS, VEDS, EDS Mast Cell and calls these conditions MUPPETS. The lead researcher on the SMILE trial, MAGENTA and FITNET-NHS - inform me what apart her trials play in your educational material. Medical staff not taught the relevance of POTS testing or significance of using heart rate monitors. This goes against NICE guidelines that she is very fond of quoting.

As with the Fatiogo trial if monitors are being worn what assurance do we have they will be a reporting outcome in her trials? or just hidden as with the other trials she has done? Harms are not listed and let’s remember anaerobic threshold that a normal athlete would reach at high peak intensity training, is reached doing daily tasks with these children, so harms would occur, breathlessness, chest pain and irregular heartbeats, causing distress and anxiety to young children. This is harmful with children that suffer both ME, POST and VEDS/EDS/hypermobile joints, this is of great concern. Dr Ramsay in 1986 defined ME with them in mind. The number of children made bedbound by treatment shows the harm and these need to be reported to enable medical staff and parents to understand ME better and be able to give informed consent.

This is without the way in which children are recruited. David Tuller can advise on the unethical approach. Wakefield only enlisted the help of a few children; Professor Crawley enlists the help of so many more; 700 on this new trial. Advertising to doctors of recovery even before she has started the trial. How can she possibly predict the result? Trials are there to prove or disprove, not assume the evidence will be there before the trial starts.

The SMILE trial was based on a private companies’ secretive approach and that once used tarot card reading as an aid to diagnosis? The cost of this treatment is well above what the NHS would spend on treatment for ME sufferers. This is wasting precious resources. How did any of her trials gain ethical approval, as reading the letters of concern is sad reading indeed with yet again many world renowned doctors and researchers signing an open letter.

Could you please confirm that Danya Ruth Glaser Reg no: 0291660 is the same who is also on the specialist register and recommends children having tantrums should be looked as possible FII cases, and also helped on the NICE guidelines with regards to FII.

As Alec Shelbrook has said “this was a clear example of a governments body over stepping their brief” as he explains “blurring the lines of abuse and normal childhood behavior”. This will make the lives of parents with children that have autism extremely difficult. Now she seems to be targeting parents with children with ME/CFS, MUS and probably the new FND. Why?

There has been great concern with how children with autism have been treated, again with many avoidable deaths. Many parents who have children with complex needs are being gaslighted with their concerns and knowledge.

Melanie Parker Reg No: 2639880  could you confirm this is the same Parker who works with children with ME.  If so, why is she also instructing professionals on how to accuse parents of FII when they have a medically diagnoseable Neurological condition as listed by the WHO. This shows a distinct lack of understanding and is harmful to children, their parents and their family life. I know of parents that have children that go to her clinic, now feel very threatened.

All five have either completed research or training that has formed medical understanding, influenced medical education and public opinion, endorsed by the GMC. They have influence/control over Choices, NICE, NHS, Science Media Centre; who protects Esther Crawley from her fictional abuse stories; as none of the abuse she openly talks about has been proven and one poster she used in a Bristol TEDtalk was made up, and which the artist asked her not to use. Getting paid to educating public, medical, dentists and police staff. This is your responsibility to correct the institutional and medical gaslighting of a group of patients, whose parents have no power to speak out. Your control is over the register of authorised trainers, specialists and doctors, why have you allowed this behaviour to continue?

The History and the evidence of many young adults and children’s lives brutalized.

Sophia Mirza autopsy report should have stopped opinion and caused medical staff to do no more harm. The recording of her being forcefully taken from her home still astounds me. What action was taken by the GMC against those that wilfully and skilfully perpetuated the abduction?

Please explain to me how the findings of her autopsy could possibly indicate that rehabilitation would work, that it is not serious condition and why doctors are not informed of the gravity of ME. This was back in 2005 (the year my son was born). In 2018 doctors who tried to help Merryn Croft were left helpless by your trainers’ opinions and against all biomedical science.

That doctor endured what others would deny. That doctor should have been supported by the biomedical knowledge we have. How many more like Merryn are there, I know of many.

13 years of knowing the inflammation of the dorsal ganglia and the pain that can cause, and we do what? Oxidative stress, Cori cycle, ion channels, and how TRP channels are highly involved with our sensory and pain. Don’t you think we should proceed with caution with regards to rehabilitation methods of vulnerable children, and doesn’t take into account thinking is the same as running a marathon with ME?

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.” I would suggest this whole affair is showing the same signs of avoidable suffering, not only within ME/CFS, but also EDS, Lymes, MUS, autism and FND and should and could be stopped now.

If we look more closely as with Karina Hansen (Denmark) who was taken away and suffered enforced rehabilitation and drugs that she did not need. Her parents were left helpless while abuse on their child was carried out. When parents are accused of FII they have no say and are silenced by the medical professionals. The trauma and sheer sickness of this act is being carried out throughout the UK. In Karina’s case, they have now asked another Doctor to come and look at her and what did she find:

On the 9^th July 2018 psychiatrist Dr Charlotte Emborq appointed by the court in Holstebro to make an independent assessment of Karina’s health and her capacity to manage her own affairs. We do not have the full report, but what has been made public and shows:

“Karina does not suffer from any psychiatric illness. She does understand the role and purpose of her court-appointed guardian and she would like him to be removed from her case. She was found to be capable of managing her own finances.

How many children with ME languish in mental Hospitals in the UK, caused by your blind eye to other research and bias on someone’s considered opinion. How much suffering did Karina endure, we can only imagine but we can listen to Sophia Mirza and her mother. Read the reports and how they tried to take the good doctors who protect her down.

I am sure you are aware of how this is in the UK, as Dr Myhill has been taken to the GMC, is it 28 times? She has been stopped from speaking the truth as quoting from her book “I was heavily criticised once for stating that my CFS patients were in heart failure – this was considered an alarmist statement which scared patients” Well let me assure you, it is not as alarming as doctors not taking it seriously and leaving a child in this state for weeks, or good doctors not knowing what to do.

You are aware of expert paediatrician Dr Speight and how they have tried the same with him. I suggest you ask his council on the FII campaign - that has been going on for years. By his good council you will be able to see how much damage has been done to the family structure, and security of family life within the ME fraternity. Mistrust against doctors, the NHS and the GMC is inevitable as the truth unfolds and remember 25,000 is not a small number of children.

If you ask Countess Mar of the forward for ME parliamentary group; who has been asking for information over FII reporting. It is clear there is no way of seeing how many doctors wrongly accuse parents of FII and find they have misdiagnosed conditions, misrepresented evidence, causing harm and death. Therefore, the learning pathway on this is NIL. We are down to believing the doctors, which has proven historically dangerous for patient safety, especially with regards to Bristol hospital where Crawley is doing her research.

The Tymes Trust has helped many of those accused with no parents being found guilty of FII and once again if you ask for Jane Colby’s council, she will be able to assist you, in making sure you have a full and unbiased opinion on the matter.

It astounds me that misdiagnosis with near death or deaths are covered up with false FII accusations on parent’s. When found innocent they still have courts gagging orders. How is this allowed.

This is taken from your approved Paediatric Community Child Health Curriculum and is put under behaviour which goes against the World Health Organisation. Please explain.

Understand the principles of treatment of chronic fatigue syndrome/ME and the need to engage the family with a rehabilitative approach.  I do not see much engagement going on, I see forced harm.

You cannot blame the medical profession if they are not aware of an issue or wrong doing. Your education dictates a course of action that they follow on trust of your good governance. It is your responsibility with others to inform the medical staff of concerns, you must work as a team across all departments and the patient voice is the one you need to listen to, especially the children; past and present, so lessons can be learnt. We are not talking one or two children, or even hundreds we are talking thousands!

How can you in good conscience advocate to take well-meaning medical staff, that are following your recommended and approved trainers and approved educational curriculum, believing the structure and teaching they have been given, based on the PACE trial, (quoted at us as being “good solid evidence-based research”) through any complaints procedure as you advised me in your letter?

All or most hospitals list ME as a mental health issue of some kind or another and it is now being listed under “Functional Neurological Disorder” at a teaching hospital. It is obvious that no one is looking at the WHO definition of ME? Please explain why you do not re-educate these doctors under your register.

A quote from the email you sent me,

“The General Medical Council helps to protect patients and improve medical education and practice in the UK by setting standards for students and doctors. We support them in achieving (and exceeding) those standards and take action when they are not met.”

NOW PLEASE ACT UPON those words and inform me in detail with all the above points raised.

An update on Angus:

On Thursday 9^th of August we took my son to receive his blood test results ordered by the paediatric. Even though he bathes in Epsom salts several times a day, his magnesium was only just within the normal range. If I had not known about possible magnesium deficiency, what would have happened to my son in the past 5 years of his illness?

Low Vitamin D and liver problem have only just been found. Unfortunately, they do not understand the relevance of these problems. Yet even though he has celiac disease his Vitamin B has not been tested.

If they had known about Cori cycle and Julia Newton and Dr Myhill they would understand the importance and give emergency and concern for his health. They have not taken EDS seriously. Furthermore, the POTS that he is diagnosed with at my request and even when I show that his heart rate goes up to 160 when standing, his symptoms have been put down to a three weeks anxiety attack? Your teaching, your responsibility.

I have great empathy when a doctor or consultant looks at me with dumbfounded hopelessness to know how to help my struggling son. It is truly heart-breaking when good considerate doctors are so let down by the GMC and their approved trainers. For my son it is taking his life away one inaction after another.

Finally, this is what we face on a daily basis. These doctors are on your register and are causing untold harm with no safeguards for young patients and their parents. No homes or foster carers are educated in how to care for the sever ME young person, how can they be when doctors are flouting the rules that should protect the public.

This letter will be an open letter and I will endeavour to send to as many influential people as possible.

Open Letter to Richard Horton of the Lancet gathers more names

I cheered every name on this open letter and was wondering how much longer do we have to wait before the right thing to do, is done?

I also wished I had enough funds to take them all to court. The lives ruined because of this shameful research would be striking.

If you laid all the people and the children with ME hand in hand; lying down obviously, they would stretch around the world. The whole world is affected and touched by this illness, and none of those that suffer get the help they need or deserve. This huge falsification of facts that has led to a myth, that has harmed all those people around the world, needs to be taken down.

When you go to court you have to have an idea of the compensation you would ask for if you win the case and this also got me thinking.

Motivational speakers insistently talk about the little things and taking control. Well let me tell you that the little things that count in life are not valued. I would be laughed out of court if I asked for compensation over picnics with my family and our dogs. But it is those picnics in these last few years that I have missed the most. Picnics at the seaside; playing games on the sand, at woodland areas with bikes, in the back garden with family and friends, we have missed them all. The only place my son can have a picnic is in our home.

What the motivational speakers don’t tell you is, that sometimes when you do the smallest of things it can feel like a smack in the face with wet cold and smelly fish.

At 8 my son found it funny - having a picnic in the house on rainy days. He became so unwell he could no longer laugh at my funny ideas. At 13, my son would feel as this small attempt at gaining something he has lost, as a smack in the face with that large smelly fish.
In my mind I hear the words of William Shakespeare spoken by Emma Thompson, in the way she played the scene from “Love Actually”.
LV sonnet

“like as the waves make towards the pebbled shore,

So do our minutes hasten to their end;
Each changing place with that which goes before,

In sequent toil all forwards do contend.”

I think of all those people, researchers, doctors and sufferers that we have changed places with, as well as the time that comes crashing in on us, washing us out to sea. What compensation would ever replace that time lost? Of those memories we should be able to cling onto in times of hardship or when our time has come?

I think of all those yet to come that need not suffer as we have had to. I think of all the money lost on follies of empire, that has been built on the good name of our NHS, and it makes me SadMad.

The control of this is yours Richard Horton, now cometh the hour, cometh the man. For it is time to stand firm with the need to do the right thing, not just for our people or our country, but all those around the world.

Most of all Richard Horton stand forward for science and its good name.

You can see the Open Letter that David Tuller is committed to here

http://www.virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/

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