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?

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.

GMC Send Their Decision. It made no logical sense to me. Does it to you?

So on the 9th of February 2018 I sent a letter to the GMC in support of Dr Myhill's complaint.

I am not a Ms and the last paragraph I really object to, which I have addressed in my reply which I address in my next blog.

They say they oversee medical education... Err research forms medical understanding and education?Or am I missing something here?

Dear Ms Rodwell

Thank you for your correspondence sent via email which was received by the GMC on 9 February 2018, addressed to Sir Terence Stephenson. Your concern was passed to the Fitness to Practise section to look at the issues you had raised. We have now reviewed all of your correspondence, including the original concern from Dr Myhill.

In considering your concern, we looked at the doctors who were involved in conducting or publishing information relating to the PACE trial, who hold current registration with the GMC.

After careful consideration, we have decided that we will not be taking the matter any further at this time. We’re sorry if this is not the outcome that you were hoping for.

Concerns about staff involved in the PACE trial who are not registered doctors

There are a number of other researchers listed as authors of the PACE trial. However, as an organisation the GMC can’t investigate concerns which do not relate to registered doctors.

Our role

Our role is directly related to the registration of doctors. Our responsibilities are all connected to keeping the Medical Register. We oversee medical education; we give entry to the Register for those suitably qualified; we advise on good medical practice while registered; and we remove or restrict registration in response to fitness to practise concerns where there may be a risk to patient safety.

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 to such an extent that action may be required to stop or restrict the way in which they can work to protect future patient safety.

The purpose of an investigation is to determine if or to what extent we need to restrict the doctor from working. We are not a general complaints body and we have no legal powers to intervene in or resolve matters for individual patients.

Reasons for our decision

We are aware that many people have strong views on the PACE trial and concerns about the way the research was conducted, collated and published. As an organisation we don’t have any involvement in setting standards and protocols for clinical trials. However, we do appreciate that there has been significant academic debate about the trial and its methodology and that a number of criticisms have been made. We have reviewed an extensive amount of information about the concerns raised, before making our decision as to whether we can investigate.

In addition to all of the relevant documentation submitted to the GMC raising concerns about this research, we are also aware that there was a Parliamentary debate held on 21 June 2018 which discussed the matter of treatment and research relating to myalgic encephalomyelitis, in the UK.

Our considered view is that these concerns are part of an ongoing academic and scientific debate, rather than matters which would raise concerns about an individual doctor’s fitness to practice, in the absence of anything which demonstrates that they had acted dishonestly or with intent to be misleading. From the information provided, we haven’t identified any issues that would meet these criteria. As an organisation, we wouldn’t be in a position to comment on the research framework of the trial, and whether this was fair and robust, as this is outside our remit.

Whilst we do understand why you have significant concerns about this research and the impact it has had, overall, we are not of the view that this would require us to open an investigation with a view to restricting the medical registration of any of the doctors involved in carrying out this research.

Concerns about the standard of care provided

In your correspondence you have said that you are the mother of a 12 year old child, who has had ME since the age of 8. You have said that you were not given sufficient information by your son’s GP to allow you to consider the various treatment options available and you are concerned that appropriate investigations for your son were not always followed up. You have advised that your son also experienced severe headaches amongst other symptoms, however, you consider that the possibility of him experiencing migraines was not then discussed and investigated fully. You have advised that your concerns about his treatment were often dismissed, and you were made to feel irresponsible for wanting to discuss his treatment in detail.

You have said that your son was sent to a multidisciplinary team and advised to have CBT and GET. However, after having this treatment you found that his condition declined further. However, when you tried to raise your concerns about these matters and in relation to the issue of Post Exertional Neuro-immune Exhaustion (PEME), you said your views were dismissed even though his symptoms had become worse. You have also raised concerns about the delay involved in diagnosing your son as having coeliac disease. We can see that you have also found that you were not given sufficient support to help manage his pain and discomfort.

We’re sorry to hear of the difficulties you and your family have experienced. We appreciate that many ME and CFS patients might have had a negative experience in the NHS, and that they have concerns about the way their condition is diagnosed and managed. We don’t wish to undermine these concerns in any way, however we’re not able to look at the overall care a patient has received, only the issues raised about specific doctors. In addition, we can’t investigate concerns about the availability of funding or services available from the NHS. It’s useful to remember that we can only open an investigation where we’ve decided that we may need to place some kind of restriction on the doctor’s practice. We don’t have any powers to intervene in a particular patient’s care, or recommend a particular treatment or that a referral should be provided to a patient.

We do expect doctors to be respectful to patients and their families at all times. Whilst we’re sorry to hear about the attitude of some of the staff involved in your son’s medical care, issues such as you have described would not usually be a matter for the GMC to investigate as a medical regulator. However, you can of course complain about these matters to the relevant healthcare provider, if you’ve not already done so, to allow any concerns to be addressed at a local level.

We‘re aware there is a broad spectrum of opinion both among patients and doctors as to the correct method of diagnosis for people experiencing ME/CFS, and the way the condition should be managed. We also know that patients are individuals and respond differently to treatments, and as a result there is no single way of managing ME/CFS which will work for everyone. As an organisation we’re not able to get involved in endorsing or recommending particular methods of treatment, or endorsing particular theories or research about the illness, as this is not part of our statutory role.

We understand that there are concerns about the validity and quality of the guidance relating to patients who have ME/CFS which is used by other organisations such as the NHS and NICE, as well as non-health care bodies, like the Department for Work and Pensions and various insurance companies. We don’t have any role in regulating social security policies, and aren’t able to intervene to tell other organisations to amend any current guidance documents which they use. You might wish to raise any concerns you have with the relevant body.

If you feel that any GPs or consultants have failed to treat your son on specific occasions then this should be raised with their employers at the GP practice, NHS England or with the relevant hospital trust directly in the first instance. Local organisations are usually better placed to look into these types of issues and can provide explanations and offer apologies if this is appropriate.Thank you for bringing these matters to our attention. We hope this explains the reasons for our decision and the kind of issues we are able to look at. We’re sorry we cannot help you further at this time.

Yours sincerely

Ian McCann

Complaints and Correspondence Officer

On behalf of the Assistant Registrar

Fitness to Practise Directorate

Direct Dial: 0161 923 6344

Email: fpddecisions@gmc-uk.org

9^th February 2018

Sir Terence Stephenson,
General Medical Council,
Fitness to Practise Directorate,
3 Hardman Street,
Manchester,
M3 3AW.

Dear Sir Stephenson,

I am writing to you in support of Dr Myhill’s complaint against the PACE trial authors, due to their flawed research, inability to understand good conduct in science, and as professionals within the healthcare system.

They have knowingly and wilfully dismissed the evidence of biomedical research. Made persistent attempts to make sure the only treatments offered are their own. Their beliefs and their power have stopped nearly all biomedical research in the UK, discouraged new researchers in this field by putting undue pressure on researchers through various means, including inciting hatred towards Myalgic Encephalomyelitis (ME) advocates, and the sufferers.

Made vicious claims and attacks on the researchers, advocates and doctors who support the sufferers of, biomedical research into ME (Williams, 2013).

Withheld vital information from the medical professionals about the true findings of the PACE trial, to enable proper consent to treatment. Taken away choice form sufferers and their carers. Taken away from severely disabled people; including children the ability to have wheelchairs and disabled badges for cars, without suspicion of fabricating their illness, or that by offering such devices somehow this is going to have a detrimental effect on their progress. Taken away the ability to have any second opinion.

Wasted millions of taxpayer’s monies, and resources from the NHS, knowing their treatments do nothing, worse still are passive aggressive in design. Their actions are more akin to a mafia gang, than that of esteemed professionals.

How this group of health care providers can go against the Helsinki agreement in regard to the PACE trial, disregard the World Health Organisation listing of ME, going against all other independent medical opinion, with regards ME including, renaming and conflating diagnosis to that of depression with the Oxford criteria. Even after the case of Ean Proctor their manner with which they deal with children and their parents, have caused untold damage. Their ability to say what they like, is well documented over decades. Holding a different opinion would show an ability to accept the findings of the trials they have undertaken, and other esteemed researchers including Nobel prize winners, but they do not.

I am aware that NICE are changing their guidelines, as I attended their Engagement meeting on the 16^th January 2018. After this constructive Engagement meeting a post popped up on my Twitter feed Professor Sharp who attended the engagement, liked a comment which is appalling. “CFS/ME: Swedish couple lost hope, kill their children, commit suicide. Why? In part because of the intense negativity spread by individuals/CFS groups/researchers, saying cause is bodily defect and nothing can be done. False. The children could get well!” Although Twitter is a personal thing. Yet again they slander concerns of the ME community, and turn a blind eye to research and cherry pick facts. Karen Hansen and many of our children in the UK pay the price of this attitude.

Yet still Kings College London with their Mental Health Skills for non-Mental Health Professionals (IMPARTS) show a distinct lack of understanding and respect for physical illness, and its part on the mental wellbeing of the suffer. Irritable bowel syndrome (IBS); just to take one of their Medically Unexplained Symptoms that they list with ME/CFS, can lead to great harm if misdiagnosis. IBS can be one of the symptoms for a disease that can be easily tested like coeliac, to others such as bowel cancer, but get misdiagnosed given wrong mental health treatments which results in bad outcomes for both.

Personally, their behaviour; as with the Proctor family decades ago, has had a profound effect on me, my family and friends. On my son it has changed his forever in many ways.

I am a mother of a 12-year-old, who has had ME since he was 8. He followed the normal pattern and one that is still allowed to continue, perpetuated by the PACE trial. I was given no facts to make any reasonable consent to treatment; he was given no investigational tests other than the normal blood test. This blood test revealed a problem with low iron, but the consultant dismissed this as unimportant.

Due to Sir Professor Wessley involvement in the 2007 NICE guidelines, interventions or treatments such as Vitamin B12, Thyroid, SPECT or special MRI scans not undertaken or the understanding the relevance of in this disease. In our area of Suffolk low Iodine is a problem, but this gets clouded over due to many doctors taken to GMC repeatedly, for trying to help with such investigations or treatments. (Rayman, Professor Margret al et, 2017) (Rayman, Professor Margret al et, 2013) Professor Rayman uses The Avon Longitudinal Study of Parents and Children (ASPAC) as mentioned in many of Professor Ester Crawley’s work. Yet all her research is on increasing activity with no other medical interventions and holds the same beliefs as Sir Simon Wessley and uses the PACE trial to support her work on hundreds of children. 

With a disease such as ME every little helps, unfortunately my son has a reaction to many shop brought vitamins, but due to the teaching of Wessley and his colleagues, all his allergies and Irritable bowel symptoms are dismissed. Healthcare professionals are only interested in anxiety and depression or school avoidance.

However, some medical professionals, healthcare and researchers are getting to grips with the importance of the microbiome of the gut. Their understanding has been held back by Wessley insistence that everyone should follow their belief systems into all physical illnesses such as ME, has a mental illness trigger. The reality is many chemicals within the body shoved out of kilter does influence your brain thought process. No amount of pushing through will mend that. Your moods can change with a Urinary Tract Infection (UTI) but without treating the infection you won’t make your moods better.

They also seem to get confused with the word stress. When you hold a heavy weight, you put stress on your body. You can be determined to hold the weight up to a point and then your body releases the weight. You cannot hold the weight beyond your physical strength indefinitely. It is the same with pain. They think they can determine how much pain is acceptable for a sufferer to endure.

Sir Wessley President of the Royal College of Psychiatrists and President-elect of The Royal Society of Medicine, according to Kings College is going to shape the future of mental health, this is very worrying (London, 2017). In the Joint Commissioning Panel for Mental Health, it once again made sure ME/CFS stays were no biomedical treatment will be given, and obviously does not accept the World Health Organisation that ME/CFS is an organic disorder and insists it is a functional somatic syndrome. This denial of biomedical treatment, is in violation of an individual’s ethical right to treatment.

Their actions to put ME/CFS as a functional somatic syndrome has endangered yet again anyone deemed “too involved” with their child’s illness. This includes any carer with an ME sufferer and at a time when NICE are changing their guidelines. This will be putting parents like me back under scrutiny of Fabricating and Inducing Illness beliefs (FII), the old term of Munchausen by Proxy.

Sir Professor Simon Wessley himself has used FII against children without a full physical examination or understanding the mechanics of the body. Has denied this involvement on various media outlets. Yet there was a court case and a commissioning group, and the reading of his behaviour through this case, leaves a lot of questions that need to be addressed as to why he still holds a high place within the medical fraternity. (Court, 1992). What happened to Chairman Miss Patricia MacManus report?

I therefore wonder to who’s best interests ME/CFS is put under functional somatic syndrome.

My son had been struggling after a tummy upset with headaches of new onset, repeated infections, low temperatures and high temperatures. I thought he had sinus problems. After having one of his spike headaches in the GP consulting room, the GP sent him as an emergency to hospital.

Migraines with aura are known and black spots are a common feature, when I asked about the possibility of migraine I was dismissed. These types of migraines are associated with neurological problems. This was not investigated, and no medication has been tried in the four years of my son’s illness.

That afternoon and through the night the medical staff were waiting on the consultant to authorise a MRI scan. The next morning the consultant heard the history and diagnosed with Post Viral Somatisation Disorder with multiple symptomatology, on his medical records but not the letter I was sent.

The consultant seemed to think I was asking for the MRI and made me feel this was an irresponsible action for someone like my son, who just needed to get over a virus.

I want to make this point very clear - I did not ask for a scan, my son was sent to hospital by a GP. This shows the attitude of the medical professionals - be mindful of over indulgent parents, give no tests, because this feeds into the parent’s beliefs of illness, as advocated by Sir Simon Wessley.

My son was sent to multidisciplinary team and put on Graded Exercise Therapy (CBT) & Cognitive Behaviour Therapy (CBT), without further investigations. At what cost to NHS and to my son?

The PACE trial and all the other such trials based on this, was not explained to me and I was not informed of the harms that can be done. (Caroline wiltshire, Tom Kindlon, Robert Courtney, David Tuller, Bruce Levin, Allem Matthees, Keith Geraghty, 2018)

“Patients have shown various physical abnormalities when tested 24 hours after exertion”

The PACE authors resistance to openly share the data has been appalling, harmful and discriminatory, especially when you consider tax payers money has gone into this trial along with the DWP, this then draws into question the ethics of not allowing patients voices to be heard.

My son’s team consisted of Paediatric consultant, Psychologist, and physiotherapist who dealt with hypermobile joints.

Following the CBT and GET regime my son was declining very slowly at first. I was questioned and interrogated by the multi-disciplinary team over my closeness to my son, my views on his illness, and that I need to encourage him to school. By a few months his decline was so evident 2-3 days after him doing any form of activity, but this was impossible to convey to the team. Post Exertional Neuroimmune Exhaustion (PEME) should have been taken seriously to stop further damage to his health. On some days my son would open the fridge and ask me “what is my name mummy”. He was blacking out, loosing balance and was in so much pain.

My son enjoyed going for a Pizza at a local restaurant, but this was getting too much for him. At his worst he thought his head was going to explode and would repeatedly ask me if he was going to die. How can you explain the impact of daily life to a team, when their treatment is CBT, where you must ignore all symptoms as heavily promoted by the PACE trial Authors?

If they had listened perhaps his diagnosis of celiac would not have taken over two years, and the damage done to his intestines would have been avoided. That damage reduces the body’s ability to absorb nutrients and vitamins. This was at such a young age and at a time he needed all the vitamins and minerals from his food, and all the support to enable him to recover. Furthermore, knowing that he was iron deficient in his first blood test should have sounded warning bells, especially when we were telling the team - his favourite meal was pizza.

We tried to explain he was very poorly after going to the pizza restaurant, he was not reluctant to go as they kept suggesting. They tried to convince us it was his way of controlling us. This has left him with a higher risk to lymphoma. The emotional impact of their insistence of their view of our son, has had long term consequences to his emotional wellbeing. The impact on us as parents, on his sister and brother on our collective emotional wellbeing has been immense.

When I asked for help with his increasing pain levels, I was assured that just by acknowledging his pain - by patting him on his legs, would suffice. I should modify my language around him, not acknowledge his symptoms, and to concentrate on his positives, using encouraging words instead of my anxiety. The fact it was his words and understanding I was using, was lost in their belief and understanding of a denied illness, perpetuated by Wessley and his colleagues.

I questioned the treatment and asked if anything else could help. I took in some information that I wanted to discuss. I pointed to the part in the Myalgic Encephalomyelitis Adult and Paediatric International Consensus Primer for Medical Practitioners, (International Consenseus Panel, 2012) about Post-Exertional Neuroimmune Exhaustion (PENE) and explained about his symptoms being delayed. I did not realise this was not allowed, or that it would put me under further suspicion.

The next time I went to the hospital my son went into another room with the physio, who till that point, I trusted. Previously she had explained to me about adrenalin rush, and the need to take every daily task as an activity, resting in between. At this point my son had to rest from putting on his socks, then putting on his shirt etc. He would become dizzy breakout in cold sweats, feel sick and he would explain that his world had gone black. So, her advice to me had made sense, I thought we were in safe hands and was grateful for her support.

I had taken my Sister-in-Law with me to that appointment, as I felt threatened, and she had witnessed my son’s decline. I also thought I had miss understood the psychologists attitude towards me. We both came out of the consultation even more confused, and alarmed.

The physio had encouraged my son to stand from a sitting position 20 times, and to catch a heavy ball. I had not been informed this was going to happen. He has never recovered from that day. He became bedbound.

My son had never been tested with Post Orthostatic Tachycardia Syndrome (POTS) even though this is well known to be associated with ME/CFS and hypermobile joints, in fact in 1986 Ramsey would diagnose ME on all my son’s symptoms. (Mavin, 1988) . Ramsay mentions that this disease can alarming become Chronic, so not to take great care around ME is to do great harm.

The diagnosis of POTS for my son took over three years. The damaged caused by this lack of diagnosis not known, but the build-up of lactic acid has been known for a decade or more with ME and well documented around the world. This should have been explained to me, as this increases with any activity and affects the gut and brain. Who stopped the 2010 revision of POTS on the NICE guidelines with regards to CFS/ME?

At this point they wanted to change the diagnosis, as children recover from CFS in 6 months to a year. All the allowed research by NICE would seem to suggest this, with media coverage of research by Professor Crawley emphasising this you can hardly blame the medical profession for believing this is true. But her research is based again on the same flawed methodology as the PACE trial. The conflation of Somatic, CFS on ME is the biggest problem here, not understanding the difference is very harmful.

They wanted to take my son into hospital for further assessment and rehabilitation, with little contact from me, so that they could re-educate him? Autism and other somatic disorders to do with pain were mentioned. As there was nothing wrong with his body, in fact they explained to me he enjoyed the exercises. The NICE guidelines stipulate that Heart monitors should be warn when exercising, and about Post Exercise Malaise, so why did they not understand my son’s exercise intolerance? (NICE, 2007) After all everyone agrees, any form of activity even thinking causes a rise in symptoms.

At this time, he had no further tests, even though I had tried to get them to look at the Paediatric Canadian Consensus Criteria, had marked all the relevant bits that clearly showed he was suffering from all the symptoms needed for ME, and had  left the booklet with them.  Or was it because I had done this, that they now questioned me?

They were aware at that time he had inserts in his shoes, due to musculoskeletal problems and he bruised easily. So why had they not tested him for a potentially life-threatening condition such as Vascular type Ehler-Danlos syndrome.

Why were the purple stretch marks on my son’s thighs and knees not looked at as potential signs of problems with his adrenal glands? As these markings are a sign of the adrenaline rush, the physio had told me about previously.

Why was not a Lymes test ordered, or thought of, yet again all the symptoms point that way?

Why was not sepsis thought of, with his continuing low temperatures. Since 2007 low sepsis has been talked about, and new research is looking into this also (Johnson, 2018)Cort Johnson overview of this is a good rounded piece.

All through this process I would explain, it was not that my son did not want to go to school, be with friends, ride his bike be free. It was the fact his body could not cope. My concerns about his health were ridiculed and belittled. Yet I am the one proved right with further diagnosis.

Many parents learn to protect their children from this passive aggressive behaviour of CBT and GET, as prescribed by the PACE trial. I would go so far as to say, it is the same as being asked to torture your child, many parents are left feeling this way.

Yet we are given no choice by the professionals due to the teaching of the group that is led by Sir Wessley, professor White, Sharp and Chalder. More importantly Sir Professor Wessley who determines allergies are modern day replacements of the devil, or a way of people being able to blame something on ill health, instead of taking responsibility, is allowed to cloud medical teaching and government policy, why?

The PACE trial has allowed other trials such as SMILE, FITNET, and MAGENTA to go ahead. These trials on young and vulnerable children are akin to grooming the child and blaming the parents. The evidence of this is the number of parents falsely accused FII. If they are taken to court, even if they are proved innocent, they are affectively gaged from stating the truth and are not allowed ever to work with children. It breaks families up and causes untold stress. This protects bad science and perpetuates the myths about CBT and GET. Making bad policies and guidelines. These treatments do not work in education, so how could anyone assume they would work with a multi system disease such as ME?

At no point have I been supported or given empathy. My life has been taken from me, I have seen as Mrs Proctor had all those years ago my child decline in health, unlike Ean my son has not made a recovery as yet. I have been accused by all sorts of outrageous and offensive behaviours, and no one bats an eyelid at their consequences to me as an individual. I have not formally been accused of FII, that does not mean it is not on my, and my son’s medical records.

It was when I heard Henry Wolsey words that I began to understand my sons condition “I have too shot my bolt” He said when he could no longer put one ski in front of another. Henry died on 25^th June 2016 of complete organ failure due to a stomach infection that they could not treat. On the 23^rd June 2016 Maureen Hansen finds a possible biomarker for ME, with infections in the gut (Hanson, 2016)

Many sufferers with ME die of acute organ failure and looking at my son’s physical condition I would say that it is credible and provable. Furthermore, you do not have to look too far to see the evidence from here in the UK, Australia and the US all around the year 2005, and yet autopsies to find ME are stopped why?

Parents are left afraid to complain, are silenced by courts. I could not go to PALS to log a complaint to stop this from happening to others, I was advised not to. Looking to seeing what happens to Whistleblowers, and my previous experiences, and those of other mothers that have tried to complain, they were right to advise me not to.

Parents cope with all the illnesses within ME, and they learn to fight for their rights. They do not go to doctors for help, there is no help or understanding, it has been eroded by the PACE trial.

To question yourself over your beliefs and the way you parent is not an easy thing to do. To fight against all your instincts to keep your child safe, without any scientific justification is wrong, and harmful to your wellbeing. You are left in utter conflict, turmoil and self-doubt. At this pivotal point you can do many things, for me I calmed the rising panic about the multidisciplinary teams accusations, and viewed the facts.

1.      Would my son be better off without me? Yes; if they accused me of FII and took my son away to rehabilitate him.

2.       Do I believe ME is a physical illness? Yes; there is simply too much evidence including autopsy’s reports to be in any doubt, too much research all pointing to Ramsey diagnosis of ME.

3.       I know that Thyroid, Celiac, Urinary infection and lack of vitamin B12 can all have a profound effect on emotional wellbeing, so Wessley and the PACE trial authors theories about illness beliefs, just don’t add up.

4.       Am I strong enough carry on defending my son? I have no choice.

Medical professionals have taken an oath to do no harm. They could not possibly do this to children if they thought it was wrong.

If there was proof that this was a physical disease, they would not use such passive aggressive methods to control you, and groom your child into thinking that it was your fault that they stayed ill, would they? Should they use these methods at all to anyone, let alone very young and vulnerable children?

Governments are there to serve and protect the people, they have set up things like the GMC and NICE, they would not let this happen.

These false understandings are what we fight daily. This could never happen in the UK 2018? We had the mad cow disease, AIDS and the blood contamination scandal, Ean Proctor, not to mention Shipman, we have learnt our lessons?

In 2004 there was an interesting study by Peter White al et who has close working ties to Sir Wessley, Department Work and Pensions and insurance industries, it showed that TGF-a and TGF-b were elevated after exercise (Peter White, 2004)

"Finally, we found that exercise induced a sustained elevation in the concentration of TNF-α, which was still present three days later, and this only occurred in CFS patients." 

"The causal mechanisms involved and the direction of the relationship between these mechanisms remain to be elucidated. Altered cytokine balance, for example, following an infection, may modify the threshold at which cytokine release occurs with exercise or activity, setting up a vicious circle. These processes could contribute to the post exertional malaise, myalgia and the central fatigue that characterize CFS (1, 2, 4)." 

TFG-a has been closely linked to kidney failure for years now, and I am sure in 2005 Sophia (Wilson) death could have given vital information to biomedical research. For some reason it is never mentioned. I do wonder what the other information we would be gleaned, if other autopsies had been pieced together over time with the knowledge we are finding now from new research.

TFG-b in things like cleft pallet and abnormal lung development are being researched to why was this paper not shared or highlighted. Why was this paper put in the bottom draw?

My son was later diagnosed with hypermobile joints (they don’t diagnose EDS because that sticks a label on him?) Coeliac, and PoTS. All of these conditions are constantly questioned by this group of practitioners involved with PACE trial. As time goes on his joints are becoming more supple and pliable, no one takes notice or evaluates this condition.

It is clear Sir Wessley cannot diagnose any condition consistently; you only need to look at his Camelford water poisoning paper and Gulf War syndrome theories, along with the case of Ean Proctor to see that. (Williams, 2013)

“in the words of Professor Martin Bland, one of the UK’s leading medical statisticians, it is important that false information should not remain on the record to be quoted uncritically by others: “Potentially incorrect conclusions, based on faulty analysis, should not be allowed to remain in the literature to be cited uncritically by others” (Fatigue and psychological distress. BMJ: 19^th February 2000:320:515-516). Wessely’s “incorrect conclusions”, however, remain in the literature to be cited uncritically by others and therefore may result in iatrogenic harm.”

Yet his is the leading voice in ME/CFS behind the scenes and him and his wife influence the BBC and he has now been asked to do a review into Mental Health, against great and esteemed opposition. How does that happen?

I am also aware of what could happen to my son if he has the more serious form of EDS. An acquaintances daughter bled to death due to this condition, yet still the same people that believe ME is an illness belief, think that EDS, POTS is MUPPETS - Medically Unexplained Physical Psychological (ET) Symptoms.

I have had to fight hard and tactically to get those three diagnoses, that to me are the important ones. I have lost all trust in doctors and the system. I dare say there are more medical problems to investigate, but I have learnt from bitter experience to stay away from doctors and hospitals.

I am in regular contact with mothers who, like me have no place to go, with children poorly diagnosed, given the wrong treatment and forced into harming their children by paediatrics, hospitals, education, Social Services, friends and family. We live in constant fear for our children.

It is the physical and emotional harm on my son though that astounds me.

What evidence do I have of the harms, none because children with ME are never taken seriously? I do wonder, however if the appropriate scan was performed what repeated damage they would find. What damage has been done to his organs? How much damage has been done due to the release of TGF-a and TFG-b on his body. What infections he has within his gut. Is his mitochondria working does he have Mass Cell activation? What has happened to hypothalamus and his hormones, thyroid? The list is endless, because ME is endless. I have learnt to do the best I can to cause no more harm and support my son.

I can however tell you of the harms done to his wellbeing and emotional state, and the impact on his life. It has been catastrophic, eroded by such things said to him like “You don’t need that wheel chair you are a big strong boy” when his legs would collapse underneath him, “you do realise your mum had to give up her job because of you?” all at a time when his normal life was slipping away from him, with no explanation, understanding or empathy.

The GMC, the government and the medical profession, but 

mostly the PACE trial, have ripped my son’s belief in his *self* apart. He is just one of the growing numbers last counted over decade ago, at 25,000 children in the UK. Over 200 parents falsely accused of FII; numbers not known or counted, and many more that have narrowly escaped due to asking themselves those questions at the pivotal moment as I had, calling on those brave doctors who are aware of the consequences to them, protect our children as the state and all the medical profession should do.

He will never be that boy who used to let the dogs out of my backpack and hold them on his lap as we bike to school laughing. I will never again see that boy that never walked when he could run, never run if he could climb, the one I was confident that one day would fly to heights that he dreamed to live up to. That time in his life has gone

How can a child be robust enough to cope with the treatment as prescribed by Wessley, Sharp, White and Chalder?

PACE with its form of CBT and GET, as Trudy Chalder teaches shows how far they allowed to go with regards to the wellbeing of children in their care. (williams, 1996)

In a letter dated 22^nd November 2003, the mother of a young man severely affected by ME wrote:

“The consultant in charge wrote to Dr Wessely for advice. On my son’s hospital file is a document dated 07.03.01, a “Draft Action Plan Proposal following consultation with Trudie Chalder”.  I find the action plan shocking, and I was particularly disturbed by the penultimate paragraph, which states: 

“We expect (her son’s name) to protest, as well as the activity causing him a lot of pain.  This may result in screams….it may feel punitive”. 

When I hear the recording of Sophia being forcefully taken away from her home, and read her letters, as a mother I ask the question how has society let this happen?

Sophia’s case: what was found as one of the causes of death was acute anuric renal failure, ie. a very sudden onset of lack of output of urine arising as a result of ME/CFS. 

This is years after Ean had been brought to the attention of the Queen, who had passed on the information to the Secretary of state for health. So, it has been known how children were being treated from as far back to 1986. (Proctor, 1989) Ean asked his parents "do I have to die to prove how ill I feel?" This has not changed in 30 years

But we have all let this happen. This situation has have taken my son’s dreams and crushed his body.

He will say often to me “Don’t ask me how I feel mum, I have to deal with it. I don’t want to look back it hurts too much; I don’t want to look at the future, because I know people don’t believe me. I want to live for now, so I can be happy now.

That is what they have left my boy with, and my family now must live with the consequences of that.

Yours Sincerely

Tina Rodwell