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.

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.

ME Diagnosed by Post Exertional Malaise (PEM), So Why Treat With Exercise?

My son was left bedbound by Cognitive Behaviour Therapy (CBT) that told him not to speak about the increasing pain, the blackouts he was experiencing, the stiffness and cold joint pain, the headaches - when he thought his head was exploding. The symptoms are all part of Post Exertional Malaise (PEM). This makes ME unique - every activity, thought, feeling or laughter causes PEM. ME is not a fluctuating illness without a cause. The fluctuation comes from overdoing, which causes increasing severity of symptoms, and further damage to the many systems within the body.

You keep in a rested state you can live relatively free of pain. You increase in the wrong way at the wrong time; you cause damage to your body. This has been proven, and can be tested with a two day physical cardiopulmonary exercise test (CEP). This test has been known about since 2011. If you do a CEP test and then do MRI or SPEC scans, with bloods taken, the damage can be seen! Blood serum and microbiome tell a complete, yet individual story. We will have to look at biomarkers in a different way as every little thing affects ME sufferers, changing the markers.

My son was 8 in 2013, when the psychiatrist and multidisciplinary team he was under insisted on him going to school, and put him on Graded Exercise Therapy (GET). They said he had reached a baseline? He was suffering more pain but they told him not to mention this, so how could they tell he had reached a bassline where his symptoms were under control? This multidisciplinary team did not test for POTS, EDS, coeliac or infection like Lymes. The coexisting conditions well known to those that understand ME.

Since the beginning of time people have understood about Flu and the symptoms?  That awful stage of when your eyes are suck with cocktail sticks, your ears are sore and are ringing, joints ache and burn, cold sweats or raging temperature, your tummy is out of kilter and going to the bathroom is like climbing Mount Everest? You cannot face eating and you constantly feel sick. We did not need to know its pathway and we understood it took some time to get over. That was until HIV and AIDS. Now we understand that all sorts of chronic conditions can be caused by assaults upon the body, we are learning how B, T cells work and cytokines. The cause of inflammation and how autoimmune can seriously impact upon a body after infection, we are beginning to understand how Sepsis sets in.

We are beginning to appreciate how all the dots of Cells, cytokines, ATP, inflammation and DNA changes impact, glycolysis and lactic acid cycle, all these problems, centre around the central nervous system, gut and brain and the damages or changes through our DNA.

Yet I am the one who is told I am in “science denial”, an ME activist portrayed by Professor Crawley as some sort of criminal, for wanting to learn all I can about the illness that consumes my son? A person who has a belief that I cannot let go of? Once silenced by threats of Fabricating or Inducing Illness, but NO MORE!

I have been abandoned by the medical profession! They don’t know about all the physical problems and only told to treat with ever increasing activity. I am seen through the preaching of Professor Crawley. SMILE trial based on the Lightning Process, FITNET-NHS with the WII fit, parents re-educated about illness beliefs? Set on by society because my child’s body fails to keep up.

I have found the facts. With those facts I now have my son out of bed but house bound. So when you listen to Professor Crawley won’t let the Children speak of their negative experiences, and carry on with exercise regimes REMEMBER DO NO HARM REMEMBER ME! 

I would like to take the time to explain what happens to a child with ME as Professor Crawley who educates other doctors, and does not seem to grasp the concept or take the time to observe. Any activity causes the body to disregulate in may systems deepening on the ME suffer as an individual. This is from watching TV to laughing at a joke. https://youtu.be/DNNeE6rhTm0

Interview with David Tuller PhD, May 2017

https://www.youtube.com/watch?v=xbikuCqoD98&t=160s

Stop The Abuse - Dr. Myhill On PACE Exposed

https://www.youtube.com/watch?v=LasPOnRx1Ek

NICE refuse to take down harmful treatments 25,000 children harmed?

I had my reply from NICE.

For some reason David Hahalam did not want to talk to me. Well I am not important, am I? After all I am just one of the 25,000 parents that would like ME taken seriously to protect the children from harm. A good solid diagnosis for a seriously abused illness, it would seem is too much to ask for. For them to understand, it is their responsibility to stop the emotional blackmail that goes on with CBT under their guidelines. Head against establishment wall I am afraid.

Perhaps they should note that CBT was no good in education and it would appear that in depression it is only a placebo effect, as explained by Oliver Burkeman in the guardian. So for a physical immune response, they are offering a Placebo treatment?

https://www.theguardian.com/lifeandstyle/2015/jul/03/why-cbt-is-falling-out-of-favour-oliver-burkeman

So here is their resonance and my thoughts in red. Please do add your comments in the comments box below.

Do you get the feeling they did not read my letter?

What will it take for NICE to do no more harm to children with ME?

How can they say no harm done if they have not asked those who have been harmed. Do we not learn from history?

When will NICE start listening to children and their parents, let alone the 250,000 patients who have been suffering decades of abuse at the hands of those reported to protect them.

What is the point of NICE to do no Harm?

This is the letter I have just sent to NICE, it is one of many. I sent it at 9.30 this morning 11th July 2017. Below is the one I have sent to my local MP, I will be sending this to all parties, so if you are reading this and you are in a party get in touch, PLEASE.

I don't expect to be listened to, but you have to try and maybe some of you will sign the petition from the ME Association and get involved?

http://www.meassociation.org.uk/2017/07/me-association-petition-the-nice-guideline-for-cfsme-is-not-fit-for-purpose-10-july-2017/

Dear Professor David Haslam, and Surveillance team,

Regarding the decision not to update the NICE guidelines on ME.

I am a mother of a child who has classic Ramsey defined ME. I have been coerced into giving my child CBT and GET against my better judgement. He went from 70% ability to a function of only 5%, for which I was blamed. I AM NOT ALONE IN THIS!

Through my due diligence and care, with an awful lot of research, attending Invest in ME conferences, talking to researchers like Ron Davis, Jo Cambridge, Fluge, Mella, Armstrong, Maureen Hansen, listening to Mark Van-Ness, speaking with Doctors such as Speight and John L Whiting who is working closely with Neil McGregor, my son is now able to get out of bed and have some normal but careful monitored activity around the house. It has taken years to undo the damage done to him from GET and CBT. 

The damage done to myself, and my family is immense, the words for which I do not possess.

Medical staff try to back me, they know of treatments that can help, but they are aware of the constraints imposed on them and enforced by PACE trial believers, that are more akin to a cult than a guideline for health. This should never be allowed to happen. Doctors, not allowed to treat and support patients with known helpful treatments like Vitamin D? Or ask for tests, this is outrageous in any civilised society. 

NICE should denounce the PACE trial, it is a flawed study on so many ethical grounds that you are fully aware of. PACE has been used to control, demoralise and harm those it states it helps, insisting the term CFS is used with no legitimate reason. There should be a public enquiry and I am sure in the near future there will be. 

PACE has been based on the theory of “Mass Hysteria”, “Illness beliefs” and “spiritual healing”. This then alludes that NICE believes in Mass Hysteria and spiritual healing and forgoes science, and ethical treatment? Would parents be allowed this flimsy theory to deny treatments? NO!

The inability of a ME patient to process energy causing the body to shut down, is beyond doubt. Considering the body needs energy for activity, this then makes it nonsensical to give a patient activity as treatment, so therefore both GET and CBT are abusive, and could be construed as torture? Infections rise in many places including the gut after exercise, this has also been proven, along with lactic acid increase. The guidelines are untruthful and therefore should be overhauled and I am appalled you do not seek patients/care givers views, as they are the only ones who truly understand ME, and yet never get heard. Yet we are taunted at every turn, and left to defend against harmful treatment and misdiagnosis on our own. NICE is directly responsible for this.

NICE have allowed the abuse of patients and the demoralisation of disability, this has caused many suicides and clouded the reality of this condition, and stopped furthering the biological research that was happening decades ago. No records of number of patients, harms, changed diagnosis, or deaths are recorded, why is that? When this should be a matter of course.

There are no treatments for ME, which is inexcusable considering the physical evidence of disease. NICE should be open to all research and not close down the guidelines at every opportunity, only listening to one group of researchers that have a discredited theory or belief. 

The guidelines have been used against parents and FII is a constant battle for families, where the NICE guidelines have been used to harm children, which you are fully aware of. It is then left to parents like me and charities that have no connections with the PACE trial or FITNET, MAGENTA or SMILE trial researchers, to support those parents as best we can. 25,000 children harmed, is unforgivable. The Centre for Disease Control in the USA have now taken both CBT and GET out of their recommended treatments, and have made sure it is clear that activity that causes symptoms should be avoided.

The term CFS is a manifested term along with Unexplained Medical Symptoms, which holds no science behind them, and used to confuse the danger behind many conditions. This manufactured term leads to misdiagnosis, confusion and ultimately death. 

Many ME patients have co existing conditions like cancer, brain tumours, diabetes, kidney failure, EDS, PoTS, OI all left untreated because of the term CFS and the PACE trial, as it alludes to no harm of exercise and that the patients are just stuck in a cycle of thinking they are ill. 

As with the America you should at least take CBT and GET from the guidelines, not to do so would put further children in danger of lifelong harm and disability. NICE guidelines should DO NO HARM. 

This is an open letter and as before, a copy of which, I will be sending to Countess of Mar.

I have also attached my letter to my MP, which I will be sending today, and will be attaching this email also.

Many Thanks for your time

Tina Rodwell

My letter to my MP:

Dear Jo Churchill,

I need your help and support as my MP to guide me through how to stop false accusations of Fabricating or Inducing Illness, for those parents, with children who have Myalgic Encephalomyelitis (ME).

You may have heard the program on BBC radio four, 1File on Four about the way parents are treated, or the question being asked in the 2House of Lords by the countess of Mar? It is very frustrating to see the House of Lords frame a question about ME in the context of Medically Unexplained Symptoms. ME is not Medically Unexplained Symptoms, It is underfunded, lacks a test, and inappropriately treated but not medically unexplained, the history and research from all over the world shows you it is not dissimilar to Type 1 diabetes, most sufferers also have unknown aetiology.

There are many adults who like my son, where given Graded Exercise Therapy (GET) which took away their ability to live a normal life physically, and Cognitive Behaviour Therapy (CBT), which took away all of their self-esteem and belief in self. If the first program from the same reporter 3 Matthew Hill “Sick and Tired” 4 1999 featuring Ean Proctor amongst others. In 2009 he explains what happened to him. Have we not learnt to listen to the children? If these experiences had been adhered to my son would be at a much better physical state and safe? Who knows living a normal life. Uan Proctors experiences are being relived in 2017. How have we let this happen?

ME is classified by the World Health Organisation as a neurological condition and is a disease of the Central Nervous System G93.3. You would never know this as most Doctors are ill-informed or given the wrong impression, and treat sufferers as mentally ill. This is both harmful physically; as the wrong treatment is given and psychologically; if you are asking from your body to do more than it can permit, you are left demoralised and feeling inadequate.

From the age of eight my son has suffered at the hands of this misinformation, and was inappropriately given CBT and GET, through the NICE guidelines as many are, 25,000 children are treated this way and no number collated unlike other illnesses. Doctor’s lack of understanding is partly due to misinterpreting the NICE Guidelines and my son slowly went from 70% function to 5% Bedbound. NICE are aware of the situation and have been for a very long time, and I feel if they had taken notice of the patients, then my son would have been saved the horrendous behaviour from the medical profession

NHS, who I have written to, along with NICE have dismissed many parents in my position. ME is one condition they do not allow the sufferers or carers to have a say in the guidelines, or in treatment; which surprises me due to lack of research and funding, our experience is of paramount importance? For decades we have been dismissed, this has to stop. Like the Grenfell tower our voices fall on deaf ears, and I ask at what cost to our country?

My son at the age of eight was told to take responsibility for his illness and recovery, not to talk about symptoms. He was also reminded many times; and in my view inappropriately, that I had to give up my job to look after him. Many times I have held him racked in pain, as he sobbed his apologies, wondering how the medical profession got so inhumane.

I was never listened to, or supported. Later we found out my son has celiac, PoTS, OI and hypermobile joints, all of which impact on his ME, and the symptoms of which they told us to ignore. He is not deconditioned his body has failed him, you could see his decline in a matter of weeks. He was active and then he was very ill. He is not avoiding exercise, for when able he runs like the wind, breaking free for a short time from his constant pain, dizziness, sickness, swollen glands like conkers, every joy comes with a “payback” Post Exertional Malaise (PEM) an inability to repeat exercise. It is quantifiable and testable, and for which a group of researchers deny and lack the ability to understand. He is not “fear avoidance” he grabs life by the throat, but laughing can send his HR into 200 beats per minute plus, this then takes days for his BP to settle back down, and like anyone oxygen staved, the consequences are severe.

I have witnessed him have hypoglycaemic like attaches, similar to those my Nanna Ann used to do before her diabetes was under her control. I have nowhere to go, because of the constant threat and real fear that any negative test, whatever they are, and who ever has asked for them, would probably put us further under peril of not being believed I can assure you it has been the scariest of times, for when you hold your child, concerned over their physical health with nowhere to go, and no idea what the end result of this severe episode will be - this is the relentless place I find myself in. Imagine having a child with diabetes and no one understanding the condition, worse still believing it is one of avoidance of life, and not the physical illness it is. Imagine the damage done to such a child not being given insulin when needed, due to lack of research into the illness. Told to exercise and control their symptoms with relaxation technicities that just don’t make sense of what you witness them physically going through, and you will get a good understanding of how I feel on a daily basis, on my own, with no support just ridicule.

They are working on how the ME patients bodies use energy, and what causes the many differences they find in bloods, cells and DNA, but because of the complexities and for many other reasons, as yet they have not found a good enough, or cheap and easy to do test to enable patients to regulate their energy levels, or doctors to confirm diagnosis. More than nine biomarkers are waiting to be funded.

Many mothers like me are forced to hide in silence. We hide because we are blamed, to get us off lists so they do not have to report harms or the worsening of condition after treatments or on trials? Over 200 parents have gone through FII, none have been charged with Fabrication or Inducing Illness. That fact should say, all there is to say, about how parents are treated when they have a child or worse, children with ME. But there is worse to come. We are called MUPPETS by a leading Paediatric in the CFS field, who researches a denounced psychological theory of “perpetuating illness belief”. This research has to stop, a data exercise should be undertaken of all children with ME to find out how many are house or bedbound, this will show the harm done by GET and CBT, as all children are forced to go through this treatment. A recording of all parents accused of FII when they have a child with ME should be undertaken. All government organisations refuse to collate numbers?

Researchers seem able to deny any research that shows how harmful over exerting can be. When they are challenged or asked questions, those that put forward those questions are called saboteurs or militants, however world renowned they are. We know the smearing that goes on behind our backs by some Doctors, Researchers, and Professors that have closed seminars, Universities and mental health professionals. Still we mothers do not buckle, we stay strong, supporting each other and we learn.

We learn how to handle the medical fraternity; we learn how to tell hospital staff when our children fall ill with chronic pancreatitis, kidney problems, cancers and many more co existing illnesses. We support the medical staff when they are at a loss what to do for our very sick children. We hold them as they crumble with no true information about this common illness, and as they realise they have been fed the wrong social landscaping, we teach them how to cope. Many good doctors are hounded by others when they support parents, this has to stop?

We hold each other, protecting each other, and supporting the best we can in educating the medical profession as our children slip away into the abyss of ME.

25,000 parents know the pain of ME, 25,000 children suffer in quiet dignity the humiliation of being told they are not ill like cancer patients, and they do not deserve medical help or support; yes that is said often in 2017 to our children. With over 9000 papers logging all the physical problems and testable differences of ME, with little to no funding in taking those possible biomarkers further, or replicating solid biomedical research. UK has done very little to none existent purely biomedical research. You cannot find what you are not looking for?

We shake our heads in disbelief when ethics committees pass yet another exercise research program that point the finger at parenting rather than the illness, knowing if diabetes did not have its blood test they would be treated just the same; exercise the symptoms away, change your brain function by positive thinking?

I need you to supporting me, to get ME recognised throughout Suffolk and the rest of the UK as the illness that it is; a complex one that effects every cell and system in the body, so that Education, Social Services, GPs and Paediatrics do not keep making false allegations of FII, and those that keep doing so get educated in the seriousness of this complex and chronic illness.

Then we need to give parents, carers and sufferers the correct information so that they can be supported through their child’s disabling illness, and find the best way forward with managing their child’s symptoms and condition, without fear, until such a time a robust biomarker has been funded and treatments can be tested against.

I have enclosed and email that I have just sent to NICE. They were due to change the guidelines to take out CBT and GET, but have now refused. It is worth noting that the Centre of Disease Control in the US have changed and have taken out GET and CBT as treatments, and noted that any activity that causes symptoms should be stopped.

I look forward to hearing from you as soon as you possibly can make it

1.       http://www.bbc.co.uk/programmes/b08vyly5

2.     http://www.meassociation.org.uk/2017/07/countess-of-mar-and-lord-hunt-defend-mecfs-in-lords-debate-on-medically-unexplained-symptoms-05-july-2018/

3.       http://news.bbc.co.uk/1/hi/programmes/panorama/archive/506549.stm

4.       https://www.youtube.com/watch?v=cDeu_OlMivU&t=11s

Many thanks for your time

Tina Rodwell

Mothers Accused of FII Because Their Children Have ME Why?

“Why do the doctors hate me so much mum?”

I look down at my son wrapped in a leaden body, full of lactic acid, brain fog that muddles his thinking like my grandad’s Alzheimer’s, with moments of crystal clarity that lulled you into a false sense of security.

“Hate is a strong word my boy”

“But they really do mum; I can see it in their eyes”

I kiss the top of his head and I recognised his truth. His forehead was clammy. I gulp down the panic as I feel his little heart pound like a thundering train.

“They don’t hate you; they just don’t know how to help you.”

“They don’t even try, mum”

I had taken his temperature it was 35.4 his nausea was bad, he had his eyes closed trying to dispel the urge to be sick, constantly dizzy with glands like conkers, but I could not take him to the doctors. I knew they were running out of patience with me, with him. I had never been scared of doctors before, I was now.

I knew what could happen; two of my friends had had their children taken away. It had taken 30 days from the hospital suggesting that a 2-4 week stay in hospital; without visiting from mum. They assessed rehabilitation was appropriate medical intervention at that time. A policeman knocking down the door physically taking the child away, it was deemed appropriate action at that time? I look down at my restless son and knew he would never cope.

One of the children that were taken away for rehabilitation to hospital, came out tube fed; it was all hushed up nothing in the papers, no action taken against the paediatric doctor responsible or hospital and I would never have believed this could happen. I lost touch with the other mother, so have no idea. This trauma they put families through is happening every week, if not daily. Some manage to get away and find another way or just fade into the distance.

A week ago, the physio had taken my son out of the consultation room so that I could have a word with the psychiatrist, it was prearranged mutually and I was comfortable. The physio and psychiatrist were part of the team helping us, I thought to cope with ME, I believed and trusted them. That ended when the physio had taken him off happy and when I saw him next he was in an elated state, he had managed to do all the exercises and as the physio had made eye contact with me, she took great pains in telling me that he had NO TROUBLE DOING ANY OF THEM!

Although I was taken aback; as they had previously educated me in how even putting on socks had to be factored in as an activity, I trusted them that they would not do harm and was hopeful this was the turning point of his recovery. He didn’t recover though; he slid dramatically down and was now in constant pain and mostly bedbound.  

They called a meeting for the next week, asking for all the family to attend. A team meeting they said was needed as things were not progressing as they should. My husband and I were happy and thought we were getting somewhere. We sat in the room as they explained that they had taken some advice from a colleague; who had great expertise in this field, and it could not be Chronic Fatigue Syndrome because our son was detreating on Graded Exercise Therapy and Cognitive Behaviour Therapy and this was most unusual. They were going to look at the diagnosis again with a view of re-diagnosing. They questioned me and my husband on what had happened to our son after the last appointment. I kept quiet and just looked on closely at the group huddled together around my husband, while my husband spoke in his frank and honest way. They seemed to inch ever closer on his every word.

I dismiss the scene from my mind. I looked down at the grey faced boy with those familiar dark panda circles around his sunken eyes. A deep sigh escaped me, at least he was asleep. I put my legs against his cold ones avoiding his feet as warm as toast.

I had received a letter that morning, more or less demanding permission to take our son into hospital for rehabilitation. After mopping the floor and cleaning the house, I had sat down and  had written a letter to my sister-in-law and my dearest friend. I was asking them to hold on to it until such time they took my son away. I rang them to tell them what it was about and not to open the letter, to keep it sealed and only give it to the solicitor of which I gave them the details I hoped this would show a court if need be, that what I suspected to happen had. Hoping this would give a more balanced view of the situation and some understanding into the facts of ME.

My friend’s reaction was touching; they immediately came round in support. They were astounded and gobsmacked over the letter I had received, and were ready to march so justice could be done, but march where, I asked, who will listen? This has been going on for decades I explained.

What is wrong with these people, how can they do such a thing. I thought there was Hippocratic Oath. How can they not understand ME? They only have to look at him, and you. You are a mother we all look up to, the one we all go to when we need help. They both spat the words against the medical staff, the system, the GPs response, interchangeable with vigour, but it was no good. Their words were not going to change events. I’ve rang the Tymes Trust the only Charity I trust, they will help I’m sure, I reassure them.

You see I had researched the history of how mass hysteria had given a foot hold of loosely based mental health explanations of ME. How the psychiatrists had lobbied to self-promote the idea, other disciplines happy to delegate responsibility. The Department of Work and Pensions, the insurance industry, and Government were jumping for joy that they could all offload the “ME problem” and keep the truth under wraps.

The National Health Service along with NICE Guidelines seemed to say the right things to the charities, but played bat and ball with the reality. The General Medical Council only took action against anyone who opposed the status quo, with ethics committees seemingly blind to the consequences of their actions. While the Medical Research Council stood by and let it all happen and even if the courts intervened; those involved directly or indirectly to the PACE trial, were allowed to ignore the courts and carry on spouting their rhetoric. All other academic fraternities and medical departments turned their backs on those that suffered. The amount of families stressed to breaking point, hidden. All of them that should know better, loosely agreed with the notion ME could be linked to mental health; they did not want an untreatable illness on their books, clogging up their promotion and self-esteem? Whistle blowing is only worth doing if there is treatment to fall back on, and only the bravest try.

You have very little choice; as a women even in 2017, but to be embroiled in femininity and argue about your sensibilities. Motherhood is a double edged sword it seems. You are stripped of identity and accused of everything they can throw at you. You have to stand stripped necked and humiliated, play the system so that no harm could come to your child, and I find it barbaric, beyond words. There is no control or restriction on mental health's abilities to run riot and rough shod over general health.

You find out you are a stronger woman than you thought, as you catch each accusation and start to juggle. Mental health is steeped on you because of a wondering womb, hormones, autoimmune problems or deferring understanding from every side of the medical profession, all baying for funding. Little truth seeps through and everyone it seems allows this to happen. Then a light, a glimmer of a sparkle shines and you hope. But is hope going to be enough?

My son starts to babble on and like a brook in spring; his body ripples and sings in the moonlight. As my tears flows to him, I wonder what the best action would be. I force the tears back and breathe deeply as I unhook my arm from his grasp.

It is common practice to accuse a mother of Fabrication or Inducing Illness (FII) when their child has ME and does not recover in the specified 6 months. The only research they talk in the media is exercising yourself to health, taking responsibility of your illness and the anxiety that is ME/CFS. You write letters and fight, but you are just one of many voices that fall on turned backs.

As a mother of a child with ME I have never asked for extravagant tests, treatment or operations the classic signs of FII. Yet because of the social landscaping of ME, and untruths told, they can still get FII through the courts with little to no resistance. Even if you put up the best of evidence their backs are turned and their ears closed, they let it happen?

If I agree to the rehabilitation in hospital, I wonder as the first glow of the new dawn star-lighting through the kitchen window; to what I know is harmful treatment, who would help my son recover? Would anyone know how to help him recover? Who would get justice for him? Who would stop the harm done to him? 

The answers to these questions are for all to see in the history of ME, the answer:

No one, not one of you will do no harm! For doing nothing, is harming over 25,000 children in the UK that suffer from ME. Still known harmful treatments have got through ethics committees????? Parents are accused of fII, none have been charged. The Children are taken and harmed by rehabilitation and the result of harmful research is hushed up in the UK in 2017. They do not report decline of health or ability as a harm in research, why is that?

The glimmer of hope are a few Dr’s like Dr Speight that are true heroes, who stand firm with mum's like me, with a few other brave souls that are hounded by the PACE trial crew who try to show the truth behind the myth. It is truly truly SHAMEFUL how this is allowed to continue!

Me and my boy what happened to us. We learnt to fight stand tall and announce to the world ME is a very serious life changing illness, with no treatment, and no sound prognosis but we hope. At any time there could be a knock on my door, it is hard to live with but sometime you have to stand up for what is truth!

With your support behind us adding to our voice and demanding change, we can change the medical profession and the NICE guidelines and start to tackle the last big medical condition of our time.

As a mother you are Gaslighted and I explain a little her of how it feels

https://www.youtube.com/watch?v=sjWjCaIoJPs&t=154s