Third video of PAINSS explains how Activity impacts on Severity and incr...

What would you do if your child had a chronic illness

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 Has a Long Recovery From Having Fun

My son turned 13 last month and like all 13-year-old he was excited. We were going away for the weekend to celebrate and he was looking forward to quadbiking and trying his hand at cross bow.

Unlike most 13-year old he had been in training for the excitement, travelling and hoping he was well enough to achieve his goal of riding free on a quadbike.

With that careful training like an Olympic athlete he was in good shape, feeling good and up for the challenge. The quadbiking lasted around 45 mins and he was amazing.

Unlike normal 13-year old when he got off the quad bike he could not speak or move his legs and was in immense pain all over his body, my son has Myalgic Encephalomyelitis (ME). His recovery will be long and painful

ME is an invisible illness that effects every part of his bodies systems, leaving his body exhausted and in a state of shock every time he tries to live the life he had. ME has been abused and the only real research in the UK backed by Department of Work and Pensions, has been shown to be fraudulent. Many universities around the world use it as an example of how not to conduct a trial. Yet the NHS England still defend it and the Lancet refuse to take it down. It would appear like Windrush peoples position is more important than integrity and truth in the UK.

Unfortunately, my son could not attempt the crossbow as his body had flared so bad, we knew he had to spend the rest of the weekend recovering.

His dad went home on the Sunday took his sister back to university. Angus needs quiet and calm in order to recover. He hates quiet and calm, it is not in his nature to be still, this does not help with his recovery. Even though his body flaring is a common occurrence it is still a shock for him to go through and for me to deal with.

We have no medical help and even though there are many things that can help to alleviate the flare Doctors are unaware due to the misinformation and the voodoo research that has been allowed to continue. True biomedical research that has never received any government support or funding.

How long will it take him to recover from this much enjoyed weekend? Who knows, the scary thing is he may never recover. Why does the ME body go through this Post Activity Increase of New Severity or Symptoms (PAINSS) is the key to finding what ME is but as yet the Government have hindered all those who have tried to find out.

https://youtu.be/RP7xY_jlVTE

BBC Should Check Their Information

I have just had a reply from the BBC over my complaint with regards to their recent handling of the information of ME. This is placed at the bottom of my letter.

As always, they have not addressed my concerns and apparently the latest clinic evidence shows that mental and physical health is closely entwined. Not sure what they mean by that and they do not give the evidence ?

There should be a full enquiry into the professionals that gave the comments about treatment as they clearly do not understand their responsibilities of do no harm, neither do they understand this disease.

I informed the BBC of their duty to  report responsibly and with robust questioning. That CBT and GET  are dangerous for those with ME, as explained by the workwell foundation.

How many young people  in the UK suffer like Merryn. The Numbers are not counted of those that are ill or if they recover on treatment even thought there has always been great controversy?

Palliative care doctor stated at Merryn's inquest  "She was never really pain-free. She had incredible nausea which would not settle and had sensory sensitivities which made my job more difficult than normal."

Merryn could not have anyone hold her or touch her in any way without bringing on more pain. You can read her story here featured in the Mirror:

https://www.mirror.co.uk/news/uk-news/young-woman-bed-bound-three-12559425?utm_source=google_news&utm_medium=referral&utm_campaign=google_news&utm_content=sitemap


Dear Sir/Madam

I am wring with regards to your article http://www.bbc.co.uk/news/newsbeat-44004882 has very serious misleading information about trials into ME, the fact you quote unnamed “Specialists” and unnamed trials is bad practice. How can anyone verify their evidence or their qualifications? You are then misleading the public.

The Workwell Foundation have just issued a letter explaining how dangerous CBT and GET are for those with ME. The science around the world is proving everything that patients have been saying for decades about activity beyond the body of those that suffer ME is correct.

http://www.workwellfoundation.org/wp-content/uploads/2018/05/MECFS-GET-Letter-to-Health-Care-Providers-v4-30-2.pdf

The research from the UK that involves CBT and GET is flawed, on many many levels. Most importantly you cannot enter a trial as suffering from a condition, for the researchers to change the criteria that puts participants of the trial as recovered before they receive treatment and say the treatment cured them. Your journalists stating treatments work should have looked into the claims of those specialists and the trials they have taken their information from.

All through this piece you have shown how harmful activity is to the ME sufferer, so you must start to question the haphazard, flawed and harmful trials and information you receive, you must verify their authenticity and allow others to do the same.

All other studies based on this flawed, non-measurable outcomes and passive aggressive treatment, should be held accountable for their research. You should at least question them to prove their worth. Some of the participants are very young children, at the very least you should ask basic questions.

The biggest trial that was funded by GMC and DWP called PACE, has been found flawed and possibly fraudulent. A debate earlier in the year where Ms Monaghan explained “it will be considered one of the biggest medical scandals of the 21st century.”  https://goo.gl/t6ihTh You did not report this, so therefore you are misleading the public into thinking these trials are honest and safe.

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

You say the NHS has funded research, which research exactly are they talking about and you quoting?

NICE old guidelines; which are in the process of being changed; stated that heart rate monitors should be worn when attempting any form of exercise. To my knowledge none of the so-called “leaders in this field, in the UK” use them. They research on very young children without explaining the most important difference of ME to other conditions, that of Post Activity Increases Symptoms or Severity (PAINSS) the researchers call this Post Exertional Malaise (PEM). Over the last 20 years it has been known that, Orthostatic Intolerance (OI) or Post Orthostatic Tachycardia Syndrome (POTS) plays a major role in the function of those with ME, yet you never see this in clinics or in trial information that uses CBT and GET. This alone is against the informed consent whereby a clinician must be aware of all the research and possible harms. It is your job and responsibility to ask why this does not happen when someone of the public comes down with ME or is asked to partake in research. Some of these children will have other conditions like Lymes, are you seriously suggesting that Lymes can be cured by exercise.

As a mother I have had to find out most of the basic information of this hidden and discriminated illness myself. I had to watch my son be pushed to the point where his body Just broke. I had no choice, I was misinformed that he would get better after 6 months. Not to mention the science behind the trials is more than a little misleading to me, and the general public. If you were going to quote, you should have given full facts, with named persons, so that verification of facts can be obtained. Not to do this means parents like me are misinformed and like my son at the age of 8 will have their lives ripped away from them. 

Merryn Croft was not able to have a cuddle from those she loved as she lay dying, I have no way of knowing if this is likely to happen to my son because of lack of understanding by professionals and lack of biological research in the UK.

Reading the information about the trials and the research now emerging, I know I am being given false information and that must stop.

Please pass on to me, the information given to your researcher about the trials the Specialists were talking about, and the trials the NHS say they are funding.

Look forward to hearing from in the very near future

Many Thanks

Tina Rodwell

Dear Mrs Rodwell

Reference CAS-4915499-TDRGZP

Thank you for getting in touch with your concerns about the Newsbeat article.
We have forwarded your concerns to the programme team who explained that the statement they used in the article was actually an abbreviated version (please see below for the full statement, and the list of academics that it is attributed to).

"CFS/ME is a serious and disabling illness and the fundamental goal of all researchers and clinicians in the field is to help patients. Everyone wants to see more research, more funding, better diagnostics, and more treatment options to improve the lives of patients suffering from this condition.There are however, some misconceptions about the evidence for cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as treatments for CFS/ME. These therapies help many people with CFS/ME by reducing symptoms, increasing what they can do, and improving their quality of life.
NICE recommends that both CBT and GET are offered to CFS/ME patients, and this advice is based on good evidence from multiple studies and randomised controlled trials (RCTs) showing that these treatments are safe and useful for some patients. These recommendations have been in place for many years, and the evidence-base for these treatments has grown with time. CBT and GET can help patients with conditions such as cancer, chronic pain, and multiple sclerosis, so their use in CFS/ME does not infer that a condition is a mental illness.

Scientists and clinicians are also increasingly frustrated with the distinction made between ‘mental illnesses’ and ‘physical illnesses’ when the latest clinical evidence shows that the two are closely entwined. We all hope for new advances in the understanding and treatment of this condition but right now there are no alternatives for patients, so it is vital that they are not deterred from accessing therapies that can help them. " Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King's College London Prof Esther Crawley, Professor of Child Health, University of Bristol Prof Paul McCrone Professor of Health Economics, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King's College London Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford Prof Sir Simon Wessely, Chair of Psychological Medicine, King’s College London."
We hope this explains our approach.

Thanks, again for taking the time to raise this with us.


Kind regards

A Mad Hatters Tea Party In A Wonderland of Despair

Why Have We Got Chocolate Teapot Science?

And Not The Elegant Bone China Science!

A Mad Hatters Teaparty In A Wonderland of Despair

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

https://youtu.be/DNNeE6rhTm0

The Early History of

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

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

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

https://vimeo.com/ondemand/22513

Dr Myhill

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

The Death of Sophia Mirza

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

Euan Proctor

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

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

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

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

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

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

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

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

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

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

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

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

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

NICE Engagement Workshop 2018

NICE Stakeholder Engagement Workshop

16^th January 2018

NICE said that they wanted people to be themselves, I am no professional. I am a mother of a 12-year-old boy, who has been ill from the age of 8, misdiagnosed, given inappropriate Cognitive Behavioural Treatment and Graded Exercise Therapy, as recommended by the NICE guidelines. He was made bedbound. His diagnosis was reported as Post Viral Somatisation Disorder with multiple symptomatology.

The naming of this illness is of uttermost importance and needs careful consideration so that somatisation is never used to mask illnesses.

My son has ME as defined by DR Ramsay 1986. 

I have researched in my own way, and helped to support other mothers who like me have been accused of prolonging their child’s illness. It astounds me after all these decades, few medical professionals or many of the guides into ME/CFS can clearly define Post Exertion Malaise (PEM). My role is to pass on what I know.

My thoughts and musings are in Italics.

I think NICE knew we were coming and did their homework. I walked in and I smiled - ME/CFS was the name they used. Now before you start with the deserved indignation as to why CFS is one of the worst names ever for abusing a group of patients, hear me out, as to why I smiled at the name.

First, it is recognition that ME is the most important part of the name. We have to be mindful of CFS that has been used as the Trogon horse in this illness. If the World Health Organisation classification can be manipulated there is no telling what could happen with a name change?

Second, if we cut off CFS those poor souls who do not meet the full criteria on ME, will languish in the bin of Medically Unexplained Symptoms, on their own for evermore. Who is to say CFS; not treated properly, does not become ME. We don’t know enough, because we have not researched enough, so for me I’m happy with ME/CFS so that no one gets left behind, and until NICE have scoped and sorted the problems and can distinguish between ME and CFS. I am not happy that some medical profession disregard research, put their own take on ME, and does not respect patients. THAT TO ME IS THE ISSUE!

Thirdly they now have to consider how they will tackle the misdiagnosis which is promoted by Kings College London as Unexplained Physical Symptoms/Bodily Dysfunction Disorder or any other name they chose to invent. They have to protect patients from this, imperative for children and their parents. The misuse of Fabricating and Inducing Illness needs to be looked at too, as the previous guidelines have been quoted in many of these cases.

The responsibility of the use of the guidelines is theirs. NICE need also to look closely who they choose to give the facts behind ME and how the naming is going to impact on that misdiagnosis, and therefore the health and wellbeing of all. Be mindful of the children who could lose the rest of their lives to ME.

The decision not to include Thyroid problems and not to look at Vitamin D with the old guidelines was a big mistake as most if not all children with ME have these problems, and doctors reported to GMC if they try to alleviate suffering when using these two deficiencies, again quoting the NICE guidelines. This has to be addressed clearly and succinctly. 

Most parents are forced to find out these facts for themselves, so particular studies need to be found to address the in balance here. As regarding the Thyroid there is a known problem of Iodine deficiency found in the Bristol area, using the same Avon Longitudinal Study of Parents and Children (ALSPAC) that Professor Ester Crawley has used. She has determined from that study it is family adversity giving depression in CFS at 16, but to my knowledge she has never looked at Iodine and their emotions could just in fact be an Iodine deficiency.

 In 2010 NICE promised to look again at Post Orthostatic Tachycardia (POTS), Dr Rowe explained that this has been known about for the past 20 years at the same conference as Professor Crawley in 2017. To my knowledge Professor Crawley never POTS, but she attended a MUPPETS (Medically Unexplained Physical Psychiatric (ET) Symptoms talk in 2017.

My tail feathers were smoothed over a little when I walked into the conference room. I was pleased as the atmosphere was friendly, open, which gives great credit to the ME community. NICE were mindful of the treatment we have suffered over decades, which gives great credit to NICE.

Thank you to all the NICE team that recognition meant a lot, and is a very big deal. Now we need to put the action where those good intentions are.

Then the separation from my partner in crime, as we were given different tables. Barbra is my rock and my security blanket, my knowledge base of how the NHS and NICE work, fluff a duck I thought - now I’m scuppered.

At the opening, they gently took us over how NICE progresses through the guidelines, the order of things, how they would slot together, addressing the name and the past right from the start.

Does this mean they are determined for change, or just giving lip services? Proof will be in their actions after the Engagement?

They were scrapping the guidelines, ripping them up and starting again! NICE were open to a name change, but we must get it right, we all agreed with that. Though a more considered approach was given in a letter to Invest in ME by Dr Baker, and this will cause confusion, especially to those who tended the engagement meeting.

What they wanted from us was to know the reality of the patient’s and carers’ experience, what is important and where the scoping needed to concentrate. A difficult thing to do, given the time frame.

Once scoping was complete they would then make a committee of 13 people (let’s hope it is not unlucky). The chair would be a lay member, would not have been involved in ME/CFS, and be interviewed for the job, with a clear defined role.

Private practice practitioners, would not be involved in the process, but this could be revised if need be.

They normally have 2-4 patients on the committee.

The development Process looks like this

They have added a new process called Engagement (which I think they should keep, and add a few more of these discussions at every step as they go along, to debate progress and give points raised to the committee, > scope > clinical questions > review protocols > evidence report/clinical evidence (this to me is a very big concern as far as I can tell the NHS has lost the skill set to give meaning  to ME or CFS in any reasonable understanding, 101 things to say about this but for brevity I will just say, NICE heard a lot of evidence of harmful treatment, and will leave the rest  for now)/economic evidence >recommendation.

My first thoughts were:

1    Who understood PEM, and its impact through CFS to ME?

2.    CBT and GET is so misused and that misuse so wide spread, it is too late to rectify the problem. There must now be a strong message sent out to the medical profession that this dismissive behaviour must stop, as it is harming patients.

3.  When little research is done on a complex illness, you cannot make good decisions or discussions unless you listen to those that cope, or have lived with the consequences of those treatments that have been implemented.

4.       Who can diagnose the full ME condition?

5.    Who would know which of the guidelines were good and just needed updating, and the ones that need immediate removal, like the harmful treatments that cause a moderate condition to become chronic – CBT and GET?

6.       Know how to treat the condition, and all the coexisting complex illnesses?

On our table we discussed the name for a start. It was mostly decided that it was hard to find a name for a disease that was so mixed, misunderstood, and misdiagnosed without further research. The research fraternity would rather use ME/CFS as it has in the past.

If we changed the name now, how would that effect the new biomedical research coming out?

As for the views of patients around the table it is the attitude attached to the name by the professionals that needs to be addressed. It was also felt if we left CFS out, those that start with less symptoms than on the harsher criteria, would be missed. If they then developed the main PEM symptom in ME, this would be very harmful to them. When does CFS become ME.

Addressing the attitudes and understanding of doctor’s; they; by and large have been misinformation and have not been kept up to date with biomedical ME or CFS research, is the biggest problem. This not only affects ME patients but everyone who shows the signs of tiredness or fatigue; which many chronic conditions do. Not having the right tests at the right time, or dismissing the patient out of hand due to the stigma, is causing many lives; including children with many conditions like ulcerated colitis and peritonitis for example, to have been left untreated, near death and with lifelong avoidable disabilities, as it is with ME.

This attitude/misunderstanding leaves many like me; as I explained, not able to take my child to the  GP for any medical problems, for fear of the consequences of this lack of understanding, misdiagnosis. For instance, my son has dry skin forming in his ears when in a PEM state. It is uncomfortable and at a time when his whole body is shutting down. I am unable to get him to a doctor’s surgery due to this impacting deeper on his PEM. But more importantly, what will be said to him and how he will be treated. In the past all sorts of awful things have been said to him, and open threats made to me. This leaves me isolated from all medical care for my son, and coping on my own. This must change.

I explained in New York state 85,000 physicians were emailed a letter regarding Myalgic Encephalomyelitis (ME). This was by the Health Commissioner Dr. Howard Zucher. This needs to be done to put right what has gone wrong in the UK. There needs to be clear consequences if patients are treated this way. Without this, patient safety, and their right to have appropriate diagnosis and treatment will not take place. Due candour needs to given to ME and CFS patients like any other illnesses.

I had four Drs/researchers sitting on my table, and I was very impressed by their understanding of how important an issue this is for all patients, not just for those with ME. Balanced intelligent views of the hardship of doctors and patients was both refreshing and heart-warming, including our scribe who I would like to personally thank for the sensitive way she handled my experiences.

It was felt if you went to your GP and they looked first at you with respect and emergency, at the inability to get better with any infection within 6 weeks, as a potential health threat. They then kept reassessing for the core symptom of PEM; then this would be a better pathway and save a lot of harm, time, and stress. This single act could safeguard children from the lack of understanding. This recognition would save lives or a life of disability.

My main point was that only one Dr I have talked to; up to that point, understood or accepted Post Exertion Malaise/cognitive exhaustion. It is no good putting these in the guidelines and not being able to explain what this means to the patient or to their health, and how important this is as a diagnostic tool.

We discussed things like Post Orthostatic Tachycardia Syndrome (POTS), hypermobile joints, Orthostatic Intolerance (OI) and how this meant many consultants that did not, or were incapable of communicating with one another, on what specific symptoms and difficulties may be impacting on the patient. Inevitably this means exhausting the patients with endless meetings, going over the same ground, with little to no real constructive outcome. Patients need to be seen not just a series of “specialist’s parts”, but need to know the sum outcomes of those parts and about the interaction between the whole body when you have ME.

Many health professionals do not/will not test for any other condition, believing that ME/CFS would bring just negative results. Therefore, so many coexisting conditions get missed. That accepting these other conditions were all part of the ME, is a trial in its self. Many die from cancers because they as a patient are dismissed, that fact alone is horrific and telling.

The other problem is that most clinicians within the ME field; do not understand the importance of Heart Rate monitoring. Over 1,000 patients are doing this for themselves, and finding that their lives can be improved. Once again; a case of not listening to the patient and dismissing them.

The scribe on our table worked as a part time GP, so understood the constraints on both doctor and patients. The discredited Oxford criteria is now out, and the Canadian Guidelines are too strict in the first instance, but a good solid tick box that can be used to track progress from CFS to ME would seem wholly appropriate with both the patients, carers and doctors on our table. Yearly consultations, as standard practice for all, including severe patients, so home visits needed.

The father of 18-year-old girl who has been sick since 2010, bedridden was concerned over the harms done by CBT and GET. We all agreed that the way CBT and GET approach by most NHS staff was totally unacceptable due to the way it was conducted. There are problems with repeat infections, never looked at. This needs to be addressed at as a matter of urgency.

The misdiagnosis of Lymes and the inadequate tests was also discussed. A better test needs to be looked at. The amount of life wasted through this being misdiagnosed is astounding, and as with ME due to poor diagnosis and inadequate tests, it is labelled as Unexplained Medical Symptoms.

This goes to show how misinformed the biosocial take on illness is. I don’t think anyone would argue that the great plague could be contained by changing your bodies systems through determined thoughts and activity? … Although they may try.

It is also worthy to note Upper Respiratory Infection illness, is altered by prolonged exercise. In ME this means prolonged activity of any kind. The advice to endurance athletes is to rest! That these infections are increased in the days following prolonged strenuous endurance events, and it has been generally assumed that this is due to the temporary exercise-induced depression of immune function. So, should we look at ME patients as endurance athletes in a perpetual state of exercise-induced depression of immune function? If we don’t, we are causing known harm! The research into TFG-a and TFG-b after exercise in the ME field and sports research, should be followed closely. The fluctuations in many tests and research are possibly due to the circle of PEM, the individuals on the trial are going through. Once again PEM needs to be fully understood.

It was also discussed that there had been 3 patients on the last guidelines, and that this was problematic for many reasons. The diversity of severity cannot be conveyed with just three patients. We were told that it will be made clear that the patients on the committee will be representing not just themselves, but also all patient groups, and it will be their responsibility to find the facts.

The problem with this is, if they are ill or are time short this will be problematic. You give 10 people the same facts they will interpret with their own bias, and we must be mindful of that. Perhaps the Engagement process should follow all the steps in the NICE guidelines, using the same group of people for continuity, as a discussion and feedback process to give balance to the committee (since writing this I have become aware of a tweet that has been liked by professor Sharp who attended the engagement, 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, I do think NICE need to consider his actions, and understanding of ME and research in general. 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.

It was also discussed that the most severe patients get little to no clinical help, contact with doctors and are unlikely to get involved, so this must be considered. None of the severely affected are ever acknowledged, so no real understanding is there.

This is also a worry as most that say they are experts in the ME/CFS field, do not handle severe patients ­- as home visits are rarely heard of.

Clear defined severity scale needs to be made and understood.

We discussed how the skill set of observing and ability to diagnose is being eroded by the psychological and now the biosocial model.

For me this meeting was a good first step, but I have grave concerns over the history and the abuse.

1.       We now have no understanding of ME and lost the ability to diagnose and treat appropriately. Any advice NICE or Patients gain from clinicians are going to be tainted with the biosocial model that IMPARTS are teaching the GPs, that has failed the patients. Who are NICE going to turn to?

2.       Very little biomedical research has taken place in UK, so who are they going to ask? The research must be acceptable to the ME community, who for decades have been telling everyone the truth about this illness and have been stigmatised for doing so.

3.       Define evidence or supporting evidence needs to be made clear, so that this can be agreed. If patients and carers are not included in this, those that have said they have treated ME and have yet to understand PEM, will be the ones that make the guidelines. This must not happen again, as it is a waste of lives and funds.

4.       No or little understanding what PEM is to the individual, or the continual cycle it perpetuates, this needs addressing. All NHS staff and other services should have been able to diagnose/understand PEM, and the consequences to health. This is not the case. We need a clear statement on the guidelines that exist now, to inform all that PEM is a recognised part of ME and part of the  diagnosis

5.  We need to address the importance of infection, In 2016 Explorer Henry Worsley died after developing a serious infection. He said "Well, today I have to inform you with some sadness that I too have shot my bolt." Henry said his journey had ended because he did not have the ability to "slide one ski in front of the other". Does this not sound like ME? "I will lick my wounds, they will heal over time and I will come to terms with the disappointment," he added. Many ME patients will say this every time they do small and insignificant tasks, and get dismissed at every turn. He died of complete organ failure due to a stomach infection that they could not treat. Does this not sound familiar? How many die from complications such as these? In the month prior to his death Maureen Hansen found stomach infections in ME patients that could diagnose ME in all cases. Autopsies in 2005 found all sorts of problems including organ failure that would have caused great suffering.

6.       No one goes out or deals with severe ME, follow their journey, or collate figures. As with my son I never take him to the doctors due to the harm they unknowingly cause, and the scrutiny they place me under. Yet I am the one that has supported my son and his body from being bedbound from CBT and GET treatment, to housebound getting stronger. 

There are three considerations that must be measured when forming the new guidelines.

1.       Shipman report that states Patients and carers should be listened to. The Government agreed that complaints from patients or their representatives and fellow professionals can provide vital information in identifying potential risks to patients’ safety and that work with stakeholders on a set common standard.

2.       Due Candour, no more harm, apologies and guidelines put right. Doctors informed immediately that GBT and GET are potential harms and are taken off as treatments.

3.       Most importantly, informed consent. We must be given full facts. Most of the reliable facts are from patients. Due to lack of research over decades in the UK, research from around the world should be included, with a provision for the new biomedical work coming out.

Dr Ramsay and his understanding have stood the test of time and research. I would strongly advise this is the place to start.

These three patient safety steps should have safeguarded my son and my family, but they have been dismissed. The misuse of Fabricating and Inducing Illness beliefs has been allowed to continue unchallenged. 

We have forgotten the doctor’s role should be to ‘heal sometimes, relieve often, comfort always!

Yes, I am hopeful, the day was a good solid start to what needs to be done to protect patients, and enable good doctors to do best practice, safely within our healthcare.

We all need to support NICE to make the guidelines. However NICE needs to support the ME community, and stand up for the patients that have been abused over decades. Are we being listened to?

Time will tell, and actions speak louder than words.

To get involved and on the NICE Committee, go to www.nice.org.ukGet-Involved/join-a-committee 21st June 2018.

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