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

I had my reply from NICE.

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

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

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

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

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

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

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

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

What is the point of NICE to do no Harm?

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

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

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

Dear Professor David Haslam, and Surveillance team,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Many Thanks for your time

Tina Rodwell

My letter to my MP:

Dear Jo Churchill,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Many thanks for your time

Tina Rodwell

Mothers Accused of FII Because Their Children Have ME Why?

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

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

“Hate is a strong word my boy”

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

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

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

“They don’t even try, mum”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Normal Converstion

A Normal Conversation Between Heroes.

We take a normal conversation as such an everyday occurrence a minute to minute nothingness that happens all day every day and sometime we wished it would stop. This insignificant part of life we take for granted. If we feel down and despondent we talk to a friend, even a stranger can uplift our spirits with a single word or two of acknowledgment.

Imagine if this gift was taken away and you could only use it once in a month. What if listening to the TV is just too much? Cocooned in a leaden body wracked with pain? How do people cope? What makes them still have vitality and love a thirst for life? What keeps them so upbeat that it makes you incredible ashamed of your ever increasing needs, we need more than to be heard and to be listened to.

Naomi was forced into a get better by increasing small movements and can be seen in Voices from the Shadows http://voicesfromtheshadowsfilm.co.uk/welcome/reflections/

She has been left disabled, in pain and forgotten by the medical people that harmed her.

Caryn was 14 when she fell ill, sleeping mostly for the next couple of years. She was a little better from the age of 19 to 21, and then became bedbound after another illness. Her family has left her because of the continual misinformation portrayed by medical professions at Bath lead paediatric who researches ME/CFS Crawley, as in recent days with the enrolment of children for the MAGENTA trial; this idea that you can robustly increase yourself better with upbeat determination, is going to cause more children to be left in this near end life state, which, for some goes on for years.

These normal conversations that run on Facebook, the ones we dismiss out of hand, are where those who cannot be involved in normal life, go to have some normality. It can be proven that for a ME sufferer normal movement is the same as an athlete running the three minute mile. It takes a three hour battle just to enable some ME sufferers to sit up-right; some cannot sit due to their body not being able to tolerate an upright position. Each of these feats the one minute mile and sitting up, is a marvel of the body’s ability to battle against all odds, but ME suffers are treated like modern-day lepers, no one wants to know or be associated with them. If they try to tell their story or question the rational of trials, here in UK they are ridiculed beyond endurance by all news/media and doctor forums led by the researchers of the PACE trial.

On one of the odd occasions Naomi was able to connect on FB, she popped on my screen. It is always a joy to see her upbeat pictures and gentle wit. She is my hero of endurance. There on my screen was a message from Caryn, who quickly became another Hero. I haven’t changed much in her message, you can tell when her energy is low her spelling goes, and I know from experience how embarrassing that can be:

I am very similar to you. I live in the dark. My mobile is on a dim light. I can move my finger on my touch screen phone. I can squint my eyes to look. But I cannot talk as such very much. Very noise sensitive. I hardly ever have back ground noise like a T.V on. I love music. I often share a song on facebook I can’t listen to. So I don’t forget I love it, encase you see the same songs even if I don’t reply straight away. You are so strong.

Naomi replied:

Thank you Caryn. I feel very fortunate as I’ve improved from the level you’re at, and have some quality of life now. (Not by normal standards, but very much so in comparison to where I was) I know its absolute torture where you are. Surviving that is the real strength.

Caryn replied:

Thanks. I am happy you are bit better than you have been.

A simple loving conversation to support, by two people who wait a whole month to converse, hold that thought, in what state would your mind be in, if you were in their situation. Not able to reach out for your phone and be part of the world. Enclosed, cut off, abandoned by society, because they have been told they are “the undeserving sick” Yep that was actually said by the PACE trial theorists. Both these ladies have been ill for 10+ years! 10 years of living in this sort of confined pain.

Crawley believes this illness is started by an infection of some sort, and either a belief you are still ill, or you have not got enough sleep at night or exercised to keep your body fit, is why you are still behaving like you are ill. Could these two things be the only reasons that are keeping someone so ill? Now I ask you, does that seem right? Remember Crawley does no tests on these children even now proven evidence that ME patients bodies are fighting hard to survive. We hear of no other research that proves ME is a complex multi system disease, with a strong neurological element. Julia Newton has done some excellent work and Rituximab trials are exciting researchers worldwide, with our own Jo Cambridge doing some sterling work, but we don’t hear about this in the News or from the mouths of doctors, or on any interview?

My last conversation with Caryn who is all alone in the world:

And her having fun

Jess is another inspiration that could be helped with the new and upcoming research around the world, but she would not get better with MAGENTA trial:

https://www.youtube.com/watch?v=4AkStAwGQck

In the last few months I have heard of several cases where the hospital has rang the mother and this is the sort of conversation we as mothers have to put up with ‘they said it was ridiculous that I thought I couldn’t take my child to the appointment and what did I imagine would happen if I took her’

The mother was reported to her GP, who has referred mother to social services. Unfortunately it is impossible to put in complaints regarding child protection, as I have been informed responsibility lies with the person who made the referral. You as a parent have no one and it seems no rights. I don’t think Association for Young ME Suffers would want to help, against one of their medical advisers or the hospital they work with. So the battle still goes on.

There are no figures kept and unlike other abusive behaviour you cannot track who makes the allegations and how many they have made against innocent parents or how many are unfounded. Tymes Trust, kept busy and are the only safe option for mothers now. They are stretched to full capacity.

Dr Speight was taken to the General Medical Council, one doctor who has stood up for children who have been medically abused because the NICE guidelines are too fluid and can be abused.

Over 200 children are being recruited for MAGENTA trial and Yet Crawley does not know what is making the children ill, or how to diagnose ME, has no severe patients and asks what recovery is? Would you trust this sort of approach? Would you like to know all information before your child was put on a trial? Would you be suspicious if you were told not to investigate the facts? She says no harm will come to the children. Will these children get hidden like Naomi, Caryn and Jess? Will Crawley take full responsibility for the harm done to the children who partake in this trial, or will she be able to hide the information like the SMILE trial.

Mothers have sent petitions to AYME but they don’t respond, they take their messages down and we are gagged by every means possible, including hidden threats like the one given out for MEGA trial ‘You will be sorry if our trial does not go ahead’. Then in the media there is a rally call of so called nasty comments left on social media by ME sufferers. 

I ask you what would you do, if your child was harmed and were told to not tell the truth and keep harming them with the wrong treatment so social services don’t take your child away. Would you let the perpetrators keep harming brave children that just want a life, any life, other than at home on their own unable to play? As any parent I need to fight, is that wrong?

I am one of those 25,000 mothers. I am under threat every time I call a GP because my son is in pain or ill, or ask for tests even though it took 2-3 years to get diagnosis of coeliac or POTS, which as I had suspected came back positive. My son suffered an episode in the GP surgery of what I now recognise as PoTS and was rushed into hospital. Later I was made to feel foolish, even though it was not me that asked to go to hospital? 

They do not want to label a child with EDS they say, even though this condition is associated with ME and can have life threatening consequences, because the medical profession do not like the illness! All parents want is a proper diagnosis to support their child and regain their health.

Just a point of interest the PACE trial theorists say that allergies are the modern society’s way of blaming devils, apparently their theory is we need devils in our lives to blame, and you want me to trust them?

Do not forget ME

I just had a reply from BBC standard reply and no return the funny thing is they quote the same abusse on Wesssley and only one research paper in 2015 on Mady hornig as balanced reporting. 5000 + papers and research on ME and only one? Two on the harms done to researchers, says it all does it not BBC.

BBC its the same old stuff as PACE? Mixed researchers where or are they? Getting ready for MEGA already? Discussing ME is TOXIC? From which side/

Ebola only one person in UK gets funding and research. 250,000 people with ME 25,000 children and they get PACE trial and MAGENTA? With small studies thrown to Julia Newton, just to show willing?

Dear Mrs Rodwelll
Many thanks for getting in touch about BBC News.

Whilst we’re disappointed to learn that you were unhappy with our coverage, we'd clarify that this is the largest clinical trial of an intervention in Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME) and is being directly funded by the National Institute for Health Research (the research wing of the National Health Service). This makes it a significant story.

Our coverage has been a mix of why the researchers have decided to undertake the trial and the personal experiences of patients (particularly children) with the disease. The Association of Young People with ME – a charity that represents children with the disease – and the UK’s Medical Research Council both say there has been a lack of attention given to CFS / ME and that this trial is needed.

The BBC cannot ignore stories like this and has reported a broad range of CFS / ME research - including striving to find a biological cause in www.bbc.co.uk/news/health-31644618; the difficulties along the way in www.bbc.co.uk/news/health-15017660; the threats sent to people researching the field in www.bbc.co.uk/news/science-environment-14326514; and why discussing the disease has become so toxic in www.bbc.co.uk/news/health-14883651.

We hope our reply here helps to clarify our approach. Many thanks once again for taking the time to get in touch.

Kind Regards

BBC Complaints Team
www.bbc.co.uk/complaints

NB This is sent from an outgoing account only which is not monitored. You cannot reply to this email address but if necessary please contact us via our webform quoting any case number we provided.

Humm so are they 

Invest in ME are pushing for a Biomedical Center in the UK and have had to fight every obsticle, they are also doing a lot of biomedical research that if shining a light on this illness. If you can just give a pund I would be very greatful.

https://www.justgiving.com/fundraising/Tilly-Moments

Who stole my hero?

Who silenced him

To hide the truth?

Who is going to help my boy now?

He's only got me,  

his mother

And trust me she’s of no use

I've asked a few questions

But the answers made no sense.

Ya see I'm a woman

And apparently that makes me

Hysterical

 with no common sense.

I try to be brave 

A tough cookie

But who is going 

To listen to

A woman 

A mother

Would you?

Over 200 families have been ridiculed for believing their children suffer from ME. Over 25,000 children put at risk from professionals, who should know better. All because one group of psychiatrists fiddle the numbers on a trial and decided doctors should do not test to look for physical signs. This they say is in the patients own interests?

Children who later, it has been found to have profound problems with how their body distributes their blood, and therefore their oxygen levels when they stand up.

ME and PoTS go hand in hand.

One of the only Dr's who truly understands Myalgic Encephalitis, has been silenced by those that feel mind over body is the way forward for a problem like ME with PoTS? They do not recognise that when most, if not all ME patients stand up their heart races, starving bodies of oxygen doing untold damage! 

In general GP's don't look for physical signs when a diagnosis of CFS/ME is made, because they have been taught not to. We, you and me, let this happen because we choose to stay in the wilderness. That one Dr; world renowned for helping families like mine and my friends, has been told he cannot speak about ME or to help those suffering untold damage. How many more children will suffer now?? 

Forget us not, those of us in the wilderness, covered by the thorns of misunderstanding 

How to Control The Pain When You Are 10 With ME!

How to Control The Pain

When You Are 10

With ME!

I’ve been sitting here for over two years now! My head hurts with it all and I don’t like or trust the doctor, she don’t listen.

She sits there with her put you down smile, thinking she knows me and my body better than me and my mum! She is one crazy lady, and I have to sit here and listen to her babble on. I just choose the things I want to do apparently; I sag in my chair. She twists and turns everything my mum tells her about our life. That I choose to avoid the things in life I don’t like, the only thing I want to avoid in my life, is her! I hear my granddad saying ‘She is no good for man nor beast!’

 I’m ten, who is going to listen to a ten year old? No one in this room and that’s for sure. At ten you are stuck as my granddad would say “between a rock and a hard place”. He would continue ‘you’re up a creak without a paddle my boy; don’t let them grind you down.’ My Granddad loves a good metaphor, and he mixes them with a passion. I would like to be in the classroom when he meets my teacher, who hates them just as much. Not sure if either of them would come out alive.

I should perhaps explain I haven’t been sitting here for two years solid, I was being sarcastic or is it ironic? Sarcasm is not the lowest form of whit; it is a way to survive when you’ve got ME. Not many people get that though. I’m lucky my mum gets it, she understands, she calls it my frustration monkey. ‘Put that monkey back in the cadge and feed it a banana, now is not the time or place to let him out’ I hear my mum say.

 I’ve been coming to the hospital for two years though, and I might as well of sat in this chair the whole time. Nothing has changed, well that is a little untrue, my world used to open to everything, now my world is just the house on a good day, my bedroom on a bad day. Somehow, and I don’t understand or know why, but my body just deflates like a soggy balloon when you are really trying hard to and blow it up. The one balloon in the whole packet that has tinny pinprick holes in it and the air just wheezes through.

It is so scary when your head feels as if it is going to burst open, when you’re legs and arms go numb and you can’t see, but they think I’m a fool for being scared, or I’m just being over anxious.

How can your body do that; make everything you do suck the energy and leave you in so much pain! It’s a big pile of shit! “Mountainous mounds of shit”, my mum calls it. She makes me laugh. We make huge shovels in our minds and shovel the shit away. I pile mine on the “She Devil”, but I don’t tell mum that, she might not like that bit.

I can’t talk about ME much, I can think, and that don’t seem to bother my bones too much, but if I try to talk it through it makes a fuzzy sponge in my head, that I can’t think around it or through it. The sponge grows with cold water; it fills all the space in my talking and logical mind. The worst thing about that, even when I Skype my friends it zaps me. Over excitement or just plain looking forward to things can make my brain freeze, but I don't stop. I have to time it though, would like to throw the timer away, whizz out the window.

I try concentrating on the soundless mouths around the clinical room. She Devil didn’t put her lipstick on very well. It looks like she can’t stay inside the line. I’m beginning to hate colouring, holding my arm and concentrating just gets to me, as if a boy of ten wants to do that anyhow. Colouring it seems is the latest cure! It’s on her teeth and now that is all I can see. She calls this way of distracting your mind as ‘deflecting the pain!’ It shuts out the pain most of the time until your mind gets too tired of playing tricks on your body, and then as granddad would say ‘ya buggered’.

Just think if I sat here still and quiet no one would notice. Who am I kidding no one notices me anyhow! I’ve already blended into the background, I've just become a statistic. If I try to explain what is going on, I’m accused of negative thoughts. So there we go, the truth is negative!

Mum is fighting to have a test done for Lymes disease. She is willing to pay for the right ones. I look at the She Devil, and for the first time in my life I feel real hate. The way her eyes look at my mum… I turn away.

Just think if I stayed here I could whisper advice to all the poor kids that have to listen to all her bullshit. Her management is ‘keeping calm, close your mind. The pain is not there! Really, try telling that to my eyes. There are no organic reasons! Now that is simply not true! What is the point, she is too dumb to understand the situation with ME. ME is a complex autoimmune disease and it affects the whole of your body.

Anyhow can anyone explain how the hell my mind will be able to help if I have an infection? I don’t know a lot, I’m only ten, but I am sure that a virus or bacterial infection will not just jump out of your body when you tell it too. Who is the immature one?

You see my legs, brain and stomach just aren’t listening to me, no matter how hard I tell them there is nothing wrong. I wonder how many kids have had to sit and suffer in this way. If She Devil was training a dog the way she treats me, someone would report her to the RSPCA! They would take her to court!  Where are the NSPCC when you need them?

My mum says that we need to come; we have to play the system until the system becomes fair and starts to understand ME. Perhaps they should go back to primary school! We are taught to be inclusive and tolerant to individuals that are a little different to us. I don’t see that happening in this room.

Perhaps at the primary school my Psychologist went to, they didn’t uphold the tidy rule or respect one and trying to understand the difference in people, was defiantly not part of their curriculum. I want to smile, but know that just would not be a good idea.

Maybe they didn’t have the right sort of discipline? Though she expects my mum to discipline me, she thinks a strong will, will get me back to school. I play a game of darts in my head. I use the She Devil for a bull’s eye. CBT shows you to deflect negative thought, I guess it works, I scored a bull’s-eye, and it made me feel better.

The mention of school makes me sad. I try everything I have to block it out; She Devil picks up on it and interprets it in her own special way. I try to block the memories, but it’s too late. The faces of my friends bounce joyfully in my mind. I remember the park we played in after school, how climbing felt and the freedom of movement under the sun. Freedom from some of the pain would be a start. I don’t see that is going to happen anytime soon.

The game I brought on our last shopping trip still sits on my table. I haven’t been able to tolerate the games on the TV, old films are OK but new ones take it out of me. It’s sat there untouched for a year. I can’t wait to show my friends and play it with them, not sure when it will happen.

I look at her as she asks a question but all I see is her hair. Did her mum not teach her to brush her hair either? Why do some people just give up on themselves? I can’t understand what she has said .

I start to wonder how she would feel, if someone behaved the way she does to my mum, to her. I wonder what her reaction would be. But there again when you are ten you’re not allowed to think your own thoughts, and you have to behave in a certain way. When you’re ten, you’re not a human you’re a child!

Her hair is a tidy mess though, another of my granddads sayings or is it mum’s. How can a mess be tidy?  I wonder if she looks in the mirror before she leaves for work. My mum tells me not to be so unkind. She Devil is, she is the unkindest person I have ever known; she hurts my mum with her power. I don’t know what they teach them at university, I wonder if they give out dragon degrees. She makes a good dragon!

All of me hurts, and I just want to switch off. I try to find a sitting position that is comfortable but nothing works. The pain is making me feel sick. I feel cold inside and I just want a cuddle, to feel the warmth of mum. If I get close to my mum though, they look at me as though I am playing on her.

I can feel my mum’s pain and frustration. I feel as if I have let her down. I don’t answer their questions, I don’t hear their questions and my mum looks so disappointed. I’m sinking into the world of fog, as the sponge in my head fills up with cold freezing water. Cold damp fog that has seeped through into my bones!

I feel like a performing monkey in front of her creepy beady eyes.. I know that whatever I say she will be putting pressure on us to comply in the opposite direction, regardless of the facts. We could not possibly understand medical matters, I’m just ten.

Finally we are allowed to leave and it is as though a spell has been broken. I’ve wasted all of my energy on what? Made to feel I am not trying to get better and how is that going to help? Get back to school with a cold wet sponge for a brain. My teacher is going to love me.

My mum squeezes my hand as I try and get my legs to work. I try to hide my reality, they would disapprove of it. I feel like we are in the film of Forest Gump, ‘Stupid is as Stupid does’, I suppose and no matter what the researchers say we have to dance to the tune of the She Devil.

Kids with ME have a hard enough time with ME but the medical profession, through lack of understanding give the wrong advice. Their advice is based on the "Mass Hysteria" at the Royal Free hospital, may I remind everyone we live in 2017? 

Dr Speight Helped us to understand 

https://www.youtube.com/watch?v=208JacsB5kM

Mark Van Ness has some understanding and we now use a heart Rate and Blood Pressure monitor which helps us see what is happening to Angus's body to some extent

https://www.youtube.com/watch?v=q_cnva7zyKM&t=48s

A blood test would help, but it could take a while

https://app.secure.griffith.edu.au/news/2016/03/01/screening-test-for-chronic-fatigue-syndrome-on-its-way/?src=hp

Should Dr make amends, yes but also NHS, NICE, DWP, and the Government

http://www.telegraph.co.uk/news/health/12033810/Its-time-for-doctors-to-apologise-to-their-ME-patients.html

If mass Hysteria was a thing the Ebola should have made the world hysterical and all of us should have ME?
https://www.royalfree.nhs.uk/news-media/news/infectious-diseases-our-history/

Thank you for taking the time to understand some of the problems kids with ME have, now could I ask you to spread the word :-)

A bit of word Tomfoolery on a Monday morning

If you have any form of Chronic illness you will know the Hell in Beauty

Add your condition and the beauty of your life: Family, friends, cooking, gardening or just a small amount of time pain free. I want to build a landscape that we live in X

The Living Hell of Beauty

Meet and greet great disaster

With every punch and blow

You stand still

Stand firm I say

Take it like a man my girl!

What the bloody hell is an upper cut?

Oh... there it is!

There is something deep

Within that makes me hold

Hold it in, and take the blow

Solar plexus

Perplexed

You’re from shoddy family

Connections far too low

To be strong of will?

Listen to him, listen close

He makes sense

Does he not?

Shadow boxing

Does not make you stronger you know

Weaker

Hold firm

The truth do will out

Eventually

In the end

Take a look from histories landscape

Torturous

Forsaken

Beleaguered

That soft foggy landscape

Where no beauty should aspire

But see the poppies

The lowly nodding poppies of beauty

Do you hear the voice of the nightingale?

It rises with the truth

And the hidden beauty

And yet, the weasel and the stoat

Gnaw and bite the beauty back

Hide the truth

Behind the veil of fog

That covers the beleaguered soldier’s agony

Their hypermobility flung out with PoTS

A belief system

Not a living hell?

Quiet contemplation will fix the landscape

March I say, march!

Accept you are mentally ill

Because I say so!

You are not living on a

Battlefield!

You are living in a dream world

My Girl!

Because I say so!

It does not smell that way to me Sir

The sun of truth

It does burns bright in my eyes Sir

I see the world as it is

Thank you

I see the poppies

On the gentle breeze of change

I hear the nightingale singing the truth 

In Berkeley Square

And beauty

It has always been there

And is set to rise!

Beleaguered soldiers young and old

Will walk hand in hand

Solid, strong  

And united!

They shall not be forgotten!

Nor will you Sir

Nor will you!