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

ME is like a Pair of POLK-DOT-PANTS!!!! Passive Aggressive Non-Trusted Science PANTS

 What do I mean by ME is like a pair of Polka-Dot-PANTS I hear you cry? 

And why: Passive Aggressive Non-Trusted Science?

Well as an illness Myalgic Encephalomyelitis (ME) has been hung out to dry and ridiculed due to its many spots and the fact it never does what you would expect an illness to do. The biggest trial on ME in the UK was the PACE trial and it was the biggest load of PANTS, science has ever produced!

So by flying your Pola-Dot-PANT you are giving recognition to many hidden truths about this unseen illness.

We don’t normally wash our dirty PANTS in the open, but we have been forced to do just that, and now we stand proud against the ridicule we have endured for decades.

How as a society, have we been taught to hate those that either don’t die or don’t get fully functional?

It seems we have decided, you can live with adversity but you must be a hero of some kind, you must never be average or different if you are disabled in the UK. If we can’t see your disability you don’t have one! These threads of our society have been carefully woven into our unconscious mind as a “stiff upper lip”. But that “stiff upper lip” has been woven to discriminate and like all discrimination, it is butt ugly.

In 2011 a group of master weavers showed their Emperors of Parliament the cloth they had woven, it was called the PACE trial. It put forward a treatment called Cognitive Behavioural Therapy (CBT) - a mind over body approach, that stiff upper lip at all cost. With Graded Exercise Therapy (GET) which was used to get the patient back to work. They promoted that these patients were just deconditioned and not physically ill. This idea has been scientifically disproven. The very physically ill ME suffers, get no treatment, no support and not empathy. The trial is now considered the worst trial by the world research community.

Yet at every twist and turn, even to those that have been bedbound for decades through this treatment, they quote the PACE trial figures at them, as gold standard research.

This trial was important to the government, DWP, and the insurance industries, all of which the researchers were and still are involved with. It enabled them to link ME to a mental illness. DWP and insurance industries don’t have to pay out if they could force ME patients into the Mental Health box? Whatever the world Health Organisation lists ME as, and which they should abide by, they do their own thing? This has taken a large amount of funding from those that need mental health support.

They played on our lack of understanding over the mind, and told everyone how devilish it could be to your body with no real evidence, just a preconceived idea. Mass hysteria was thrown in as the cause of ME. You only have to look at the Camelford water incident to see how it pans out. Or the contaminated blood scandal; to see the tricks our Government and National Health Service are willing to play with our health. Our journalists, were only too happy to oblige with the ridicule as that sells papers? The comic element brought in by YUPPIE FLU and the changed name from Myalgic Encephalomyelitis to Chronic Fatigue Syndrome, was an easy play on symptoms that could be turned on the patients behaviour. This abuse has carried on through the decades, after all who listens to the mentally ill?

As a country we love anything that we are in charge of, feel empowered by, have an element of self-help and more importantly – can be pinned on the individual’s responsibility, so that society can wash their hands of them? With this in mind, it was easy to fool the medical profession as a whole, if not the entirety. These patients, they assured all, just need to move to get better, even though it was contrary to the evidence. None listened to the patients, through conferences and meetings doctors and healthcare professionals were told these poor souls are just non-compliant to treatment. Being bedbound was just deconditioning; they did not need tests, as you can just tell their “type”?

The confusion over pain even for cancer patients is becoming so widespread; people are now needlessly dying with no treatment. The adoption of biosocial model; with Medically Unexplained Symptoms, Bodily Dysfunction Disorder, are masking all known diseases like cancer, diabetes, Lymes, Lupus, Thyroid and ME to name just a few.

I had two uncles that had rarely visited the Doctors who have suffered by this and have died after being refused treatment or tests. Both told that they were imagining the severity of the pain. Both found the cause too late, both could have been saved. We hear this all the time with cancer; those numbers are collated, but there are other illnesses and diseases that suffer this fate too and need our support?

Yet a well know group physiatrists and psychologists insist that doctor’s time is wasted by patients that imagine the pain is more profound than it is? These professionals do not learn the fate of those they have dismissed. This is where the trouble begins. We need those professionals to be accountable for their theories, and aware of the damage they have done?

They also seem unaware of the new line of research tracking down our bodies many mechanisms, and how they control our many ecosystems. They seem convinced that they can see another person’s pain, just by looking at them? That they can tell what is going on deep inside a patient’s body without testing, investigating, or spending time to listen to the symptoms and what they tell us?

It is society’s responsibility to make the difference? But our apathy based on the enormous respect we give the medical profession; that they would “do no harm” and are overseen by stringent controls for safety. So we step back, until it happens to us? How many people, who looked happy, and healthy, died the next day? How many young sports people die sudden deaths? Illness does not hang a sign on your face to tell you what is going on deep within your body. Nor do our emotions save us from illness or cause our deaths. Happy people do die. Feeling young, being fit and looking healthy, death has no regard, it will carry you off regardless!

No up-to-date figures are kept of how many adults or children have ME/CFS, no figures of misdiagnosis, or treatments that have helped like Vitamin B12. No SPEC scans that can show the damage. No figures are kept even in trials of the patients that became bed or housebound, after PACE trial like treatments, including those young children. Nothing is done about the false allegations of FII. No figures on how many children taken from loving homes and what happens to them. No autopsy’s to follow the disease and learn. These are stark failings, don’t you think?

For those doctors; who were not fooled by the control the body with your thoughts approach, were sent off to the GMC, who happily chopped of their heads ­­- figuratively speaking. The GMC allowed this to continue, why? Why are parents accused of FII with no indication that is the case? They are given little to no support after a gruelling and stressful court hearing, and are coping with a chronic illness on their own.

These passive aggressive attitudes ripple through our society, so that it has become the normal thinking. They systematically take everyone down; patient, doctor, researchers, journalists and advocates of ME. They ridicule in public so that ME is not taken seriously. They don’t care who gets in their way, even good sound and solid science is brushed aside. Their ability to weave like a snake in our society has been made easy? You only have to look at the Judicial Review details, the many court cases, to see how far they as a collective are prepared to go, and still prepared to go. No matter what the courts say - NHS, GMC and our Government encourage this passive aggressive treatment. The House of Lords debates with countess Mar, heroically stating truths, bare whiteness to this too; spirituality sighted as the best medicine and the only support ME suffers deserve in 2017?

It did not matter if those they defaced, dehumanised were suffering. The more this collective got away with this passive aggressive behaviour, the more the weavers promoted those that could have, or should have, spoken out. Again you only have to look what happened when Philip Hammond wrote a piece in the Private EYE on this subject.

This collective employ their chosen few, rightly believing catch the doctors early and just keep repeating mind over body and it will sink into the fabric of society. How many times do you go to the doctors to be asked are you anxious? Well yes doctor, I do feel anxious. I need my two jobs, I feel so unwell and I do not know what the flying fig is going on with my body. We have now so watered down the true meaning of anxiety, and muddled it up with good reasoning and protective concern.

They ridiculed patients in public or behind closed doors. They locked patients up and exercised them to death, and then they hide or gloss over the facts. It does not seem to bother them; that some of those were young children. Karina Hansen’s medical records are beyond words. Naomi Whittingtom and her family have put the truth out there for all to see. How the forceful physio can harm, I could write endlessly about the blindside of society. How many children are still hidden with no medical care or locked away? Lynn Gilderdale story hurts beyond endurance. Ean Proctor’s court case is fraught with inconsistencies by medical professionals that whitewashed over and never taken to task over the cover-up. Sophie Mirza treatment is sickening beyond belief. Clair Wade along with all the others children through ME history, will show you how detrimental NICE treatment is. But none of these heroes’ collective stories are news worthy apparently “it’s not like cancer”?

A lead paediatric researcher into ME tells us there are two arms of ME, One that can get better, and the other not? That is all the information she has? No reasoning to that statement? No data tests from previous trials show the damage that might be done? The ethics committee, just on this paediatrics say so, agreed we need to put young children through a FITNET program to exercise them unsupervised? To see which group are harmed? Not why this might be? I kid you not! The sad thing is there have been many such trials, and no good results? 1000s of children put through trials that tell us nothing?

Our not so NICE, are willing to wait for this trial on 700 children, to review their guidelines for all sufferers? Fluff a duck in cold bad weather. Even after the fiasco of PACE trial? We have tried very hard to stop these types of trials, but we are ridiculed as simpletons.

Can we trust them to be honest and true with their figures? Anyone who has read the history of the PACEgate will know the answer to that. We are still waiting for the results of another trial on children called SMILE, only it doesn’t make our kids smile. Do they have to report the decline in health of these children?  Well their get out of jail card is that ME is a fluctuating illness that can from time to time make you hospitalised. The science proves otherwise. If you over exert past your bodies limit, your body deteriorates. However keep your body within its limit and you can live without deterioration, and even recover slowly. Turning this truth on its head any decline can be explained away even if the child becomes tube fed, catheterised, bedridden, it is just part of the illness? Is this ethical?

Research proves beyond doubt that physical and mental activity harms the body of an ME patient. So you would expect NICE, NHS and the ethic committee; that passed the FITNET-NHS trial, will be keeping a close eye on the data? Engage with the parents and children, make sure they are safe? Make sure the Helsinki agreement is upheld and ultimately be held responsible for their actions, along with the paediatric researcher’s team? You would be wrong!

Parents are silenced; accused of FII, the courts won’t let you tell your truth. Your children are dropped from trials as recovered. Or as with SMILE trial, parents were accused in a passive aggressive manor that they did not want their children going through the treatment. When in fact the children were too poorly to continue. They are then left unsupported medically and silenced. NICE do not listen to the patients voice. Just PANTS science?

The group of weavers tell you; you must be progressive and intelligent to understand the workings of the mind. You must believe, but most of all you must not test the cloth they have so expertly woven, and they themselves and their friends have tested. The results of the trial you would not understand, because it is far too complicated. They explain they were adrift for a while but they always knew where they would dock, you vexatious lot. The most important thing is not to look at the data; it must be hidden at all cost! TAX payers have paid dearly for the cover-up.

ME treatment can be equated to having a broken infected leg with diabetes and told to walk, close your mind to the pain, be happy and start to live. Yes it is that bad.

You must not ask for an x-ray to show the damage done, because you will believe it? This would just show us your “illness beliefs”; we can lock you in silence for that. Deny the damage or we will not be nice to you, and you will not like us when we are angry! Would you trust this sort of treatment?

As far as infection, they tell us - what a ridiculous idea? Inflammation we can explain that, we have made it as clear as mud! Not that we understand it anyhow? Who would do that in their right mind? What doctor would do such a thing? It’s not as though that has ever happened in the past? MS, crohn's disease, Epileptic fits, Stomach ulcers, coeliac, Alzheimer’s, Autism the list is endless and still we think with just will power, we can control these conditions? They are purely behaviour? Mind control?

Energy production, and metabolomics, mitochondrial difficulties, DNA what silly nonsense they say?

The weft and warp of the cloth is Mass Hysteria and mind control.

Mass Hysteria may be all the fault of the woman. They suffer this in greater prevalence the same as MS. Women are discriminated within the medical profession, we know that. More women suffering maybe down to the fact autoimmunity is different between the sexes. It is to do with X chromosome amongst other things. Anyhow if their theory “Mass Hysteria” was true more ME sufferers would be seen in highly stressed areas of the world? We don’t see that. We do see outbreaks similar to infection or around infectious diseases throughout the world. Take the Ebola outbreak for instance Dr. Abudul El-Sayed is treating one doctor, who is still suffering after recovery from initial infection, and his bloods have come back clear.

The mind is where the weavers got a grip on the illness. They manufactured that the mind controls the brain, which controls the body? How or why they reach this conclusion is uncertain, but apparently it is beyond any doubt?

Science would disagree and say there is a large amount of doubt. Our thoughts are just that, thoughts; some innate, some subconscious and some conscious decisions. You cannot put them all together and have one control box. Experience and behaviour are only part of our complexity of control. We also are only beginning to understand the willed action and how this can be disturbed by damage to the basil ganglia, at the prefrontal cortex which we know facilitates willed action. We are only just beginning to understand this innate and willed process and how this affects us.

Within our gut sits a large neuro transmitter with massive amounts of serotonin, a collection of nerve bodies the size of a cat’s brain, how does that affect our reactions and defence against autoimmune, infection and our moods? Who knows?

We can cope with adverse situations by a positive attitude, but to change our whole body’s complexities, who are we kidding? Headless chickens spring up in my mind!

So where does this all leave people with ME? Flying our Polka-Dot-PANTS in the wilderness for now. But with your help things could change. NICE can be made to listen to good science and not PANTS science.

Our complex dots are ridiculed, discriminated against, demoralised, defaced and dehumanised in public, and we need to change that, with your support we can.

I don’t want anyone; let alone a young and venerable child to feel they have to be a super hero in order to receive treatments their body’s need. It is everyone’s right as a human, to be treated with respect.

I don’t want research carried out that has known damage. The Helsinki agreement needs to be upheld, it is there for good reason!

If you feel the same I would ask:

Are you brave enough to stand up against fabricating “Illness Beliefs”?

To stand up for disability, difference, suffering and hope?

Stand up for good doctors who “do no harm”

Stand up for good researchers that believe in open and honest science, and that have and still are proving all the physical dots of ME?

Stand up for the best care for patients so that our NHS gives the best advice and treatment?

Are you brave enough to stand up and proud against NICE?

Are you brave enough to Fly Polka-Dot-PANTS for ME?

Please put the pants as your status for one week to show your support as NICE debate ME future and that of 700 children that suffer the indignity of PANTS science

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