It's Not A Big Dream To Many But It's Huge To Us.

It's Not A Big Dream To Many 

but it's Huge To Us.

Cognitive Behaviour Therapy as prescribed by Trudy Chalder on the PACE trial “Our results suggest that fearful beliefs can be changed by directly challenging such beliefs (as in CBT) or by simple behaviour change with Graded approach to voided activity (as in GET)”. In my experience if you use these techniques without understanding the patient may be physically ill, you will seriously damage their health! Testing is discouraged and yet it is well known many infections and dis-regulations of the body exist.

She also said in affect: If you did not accept that you are mentally ill, then you do not deserve treatment? In anyone’s understanding, does this seem like a person who should be in charge of research on very sick children? Remember also Lymes goes undetected in this country! These illnesses are not the figment of anyone’s imagination, and it is not the sufferer’s fault researchers are looking for a tiny fragment of a needle in a complex body.

The PACE trial is now held within the research fraternity, as deeply flawed and used as an educational tool of how not to do a trial. And yet a well know UK charity for children will not listen to the parents of the children they are there to support with ME. They refused to call for the data to be released which Trudy Chalder was involved in. Furthermore they are asking parents to let their children participate in a PACE trial call MAGENTA, run by Trudy Chalder?

Maureen Hanson has now found inflammation in the gut and would say: “Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin.” This concept was a belief conjured up out of thin air, but convinced medical people to treat very sick people by pushing them beyond their bodies capabilities. When they no longer could do any normal task they left them to fester.

This charity, says we parents and children have to be kind and gentle to doctors. Who may I ask is being kind and gentle to the children and their parents? Research is need for children with ME but not from a direction proven to be in the wrong. We need research that tracks this illness to the point of origin and understand the mechanics of this on the bodies complex and little understood mechanisms. All we get though is blaming easy targets that is to say the mothers/parents!

As responsible parents we ask for information and we are called vexatious. We pull back our children from harm and it is our attitude that holds our children back; as stated in the SMILE trial, again a trial with no results released and the page taken down that held them?

We try and find what is wrong with our children and we are accused of Munchhausen by Proxy. When these allegations get thrown out of court, we are issued gagging orders and liable slapped on us. If we speak openly and publicly we are called liars or hysterical, and everyone stands by and lets this happen to us!

My son was given GET and it made him bedbound, CBT of the Chalder kind made him shoulder all of the blame of his pain and he no long speaks of the pain that suffocates his body, for me it is like seeing someone torture his body and I am held in ridicule if I don't let this happen.

The 22^nd of June 2005 Laurie Taylor on Thinking Allowed: The last word on methodology, and the importance of valid and reliable empirical work, must go to the anonymous political insider who recently characterised the present Governments (i.e New Labour) approach to research in the following manner: ‘it is not’ he Said ‘so much evidence based-policy-making as policy-based evidence-making.” 2011 the PACE trial went into the NICE guidelines and no one has counted the damage.

The PACE trial should be thrown out and the NICE guidelines should be changed, but the powers to be do not want to lose power or have egg on their face and lose money, so like BSE they will hide the facts and we will have to wait until?

After being grilled in a consultation room and after a diagnosis had gone from; “post viral somatisation (Somatisation is a disorder the charity for children with ME advise doctors to look out for?), to CFS and then they wanted to change my son’s diagnosis yet again and take him into hospital for rehabilitation and reintegration with stimuli, they had used the analogy of a car running on petrol with diesel in the tank? It was all very confusing and serial.  I wrote the story below sometime after.

Jump forward a year and my son was given a blood test for Coeliac by a different hospital. His results went way beyond the 128 mark the test goes up to, and 8 months on it is still above the 128 mark. No one can tell me how much more over that number his count still is, or if the numbers are decreasing. He has been wheat free and suffering all that time and yet they still want him to go to school and socialise, so does he – but no one explains if this has an impact on his health and what damage is being done with his count so high? No one has offered to support him through the trauma of CBT.

So to think things through and a way forward I went to Felixstowe on my own one summers evening. The story of the car came to mind as I started to re-evaluate and try to work around the puzzle of ME.

My son also has PoTS, which is part of having ME and keeps him largely bedbound if he does anything over his baseline activities. We are told that to have a wheelchair would discourage him from making a recovery; PoTS starves him of oxygen, so go figure. We have Dr White for that nugget of stupidity, yet Dr White knows all about PoTS he was discussing it with Dr Weir on radio 4 2007.

Travelling really makes him suffer, but if we could just come to the seaside and have a wheelchair to ease his PoTS, it would be nice. However I would have to fight the system to get one and my son - who has been told he is a big strong boy and does not need a wheelchair refuses to have one, people will think he is exaggerating his symptoms, and my heart breaks. The battles, it seems, are endless.

I looked out at a family with a disabled child in a wheelchair, with a breathing mask and oxygen cylinders under the chair; as the seagulls chased and dived around them. My heart went out to them. I have no idea of their troubles or strife’s, but I have to say I felt jealous.

I loved as a child to see the lights at the seaside and the sound of the waves with the gulls, my son and I talk of this often. We dream of going to the seaside near where we live and eating fish and chips with an ice-cream. It’s not a big dream but to us it is huge.

The six weeks holiday we have had one friend round and he has talked on Skype and somehow I have to take comfort from that. I find it hard, very hard though.

Friday, 8 May 2015

If your car was broke how would you try to fix it?

If your car was broke how would you try to fix it?

Say you had this car, I'm not talking about any car but a unique, your prize possession of a car. You had this car from new and lovingly looked after it.

It is a glorious and beautiful sunny day, a good day to go to the beach. You know the sort of day I mean; the one you have been waiting for after a long hard winter. There is a crisp joyful tingle to the air, the blackbirds are singing. The sky for the first time, has that watery blue that makes you want to bath in the light of the warming sun. You really need to get out of the house and the idea of fish and chips along the sea front, with an ice-cream as you watch the sun slowly sink in the sky. Those sort of days that warm the cockles of your heart and soul. The days that make life worth while.

You go to the little car that is your pride and joy and marvel at the paintwork gleaming in the morning sun. You check everything is as it should be and you turn the key. The little engine splutters into life and although your a little puzzled to the haphazard running of the engine, you can't wait to get started, so brush it off as one of those things. Gently you start your journey but the buzz of the engine makes you just want to go with the flow, and as the engine fires into action and everything looks and sounds OK, you put your foot down and the little cars revs with joy.

The top is down the wind is blowing the cobwebs away and the simple pleasure of the beach starts to sing to you as the salty air fills you with memories and dreams. You hear the little engine misfire, and you start to loose speed. You are still moving, so not to worry, we will get there, we are in no hurry. You pat your pride and joy with reassurance and confidence, that when you get home you will be able to sort the problem out.

On the way back home, after just managing to get the fish and chips, you say not to worry we will come back when we have sorted the issue out and have an ice-cream next time. Your little car slows to a stop and you call the breakdown services out.

But they have no idea what the problem is and as you both stand there and scratch and look for problems it starts to rain. The emergency services advise you to fill the tank up with fuel and try again. many times you try to get the little car to the garage until finally you decide to go and get the fuel and fill the little car up where it stands at home.

While you check everything you know to clear the unseen problem out you dream and plan. Glorious days at the seaside getting that ice-cream you never had. going to summer shows, visiting friends and being with family. The little car keeps trying but even if you get to where you had planed to be the little car can barely make it home afterwards. For days and days you try to get the engine fired up again but it just wont turn over.

On the days you have it booked in to the mechanics for an overhaul, it runs - perhaps not perfect and not as it should be, but the engine ticks over. They say to you, just take it out for a good run, and it will be fine, it will clear out of all the gloopy stuff and will be better after that.

Each time you do this your pride and joy's engine keeps misfiring, and the paintwork somehow dulls no matter how hard you try to polish it. Other days it fires into action and you have a hard time catching up with it and fill your heart with hope, but this never seems to last very long. You sit with the little car, dreaming of past outings, the fun with family and friends you could be having. You plan.

My question is what would you do?

Try to keep starting the engine?
Run it flat out to try and clear the problem?
Trust the mechanics with their spanners and wrenches?
Try to look closely at the fuel?
Check the battery?
Look at the alternator?

My ME Hero - Happy with a Nerf gun

When You Think It Is Safe To Pick Up The Washing

It Is Now!!

My solitude is broken by the yelp of a stubbed toe a ‘Bloody Hell’ and stomping of a rushed wakening. I sip the last of my coffee and take a deep breath and brace myself.

I wonder - as I hear his mobile go off, if I should just sit here and then I giggle at the ‘Shit’ that sharply punctures my solitude bubble, then expletives follow robustly as I hear the clank of the phone on porcelain. I take a deep breath and close my eyes and hope ‘please let it be on the outside and not inside the pan’. As there are no more blaspheming or stomping or shouts for mum, I think it is safe to come out of the office, my bright room at the top of our house. I look on the breezy yet warm scene out of the window at the waving corn and remember past summer holidays of days out, seaside, farms and zoo’s and wonder how this child of mine ever made it to be a man.

‘Mum’ He shouts as he runs downstairs and into the kitchen. ‘Got it’ he stomps back upstairs. ‘Mum, mum!’

‘I’m in the office’ He pokes his ruffled head through the door.

‘Anything you want us to take to nana and granddads?’

‘Nope, was that Rose on the phone?’

‘Yep, she’s on her way home. I’ll have breakfast and then we will get going.’

Front door opens and a whirlwind zips through the house, hairbrush, makeup and perfume are applied with expert hands and I remember the feel of the little hands that used to grab mine.

They both pounce on their little brother’s bed who squeals in delight and they make fun of his breaking voice.

‘You alright’ I can hear their regret and their guilt.

‘Yep, what time are you coming home?’ Angus asks. They look across at me.

‘They will be gone all day love and you need to keep your head back, you have already had two nose bleeds this morning.’

Nothing else is said and soon the door slams and I ring my mum and dad to say they are on their way. The excitement in my parent’s voice thrills and their sadness touches me. They ask how Angus is and we chat a little, and I miss them. I remember my little hand in my dad’s strong hand, how he used to squeeze mine to reassure me.

I go to take Angus’s heart rate and it hits the roof as he sits up. He squeezes my hand and I feel his warmth and support.

‘It’s alright mum, I don’t mind.’ He reassures me, as he lies back down before he passes out. ‘We have plenty to do. Fancy a shooting match with the nerf guns.’ I smile and nod as I pick up some washing from the floor. I hear the whistle of the soft pellet before I feel the sting and I laugh as I pick up the hidden self-loading toy gun and shoot around him with the fifteen shots.

I look at his big broad smile and I know we have to make the best of life we have. I just wish this is not all we have though and one day and one day soon, that smile would be able to shine once again in a free and easy time.

25,000 children in the UK with ME and their families have to face life like this. Any chronic illness needs support and not all disabilities are wheelchair users.

Fighting for Truth

Happy Birthday Sophia

We will Keep fighting for you and everyone with severe ME

Sophia’s life should be celebrated and honoured! Her mother should have had an apology and become a Dame, but still we fight on. What more evidence do doctors need that this disease does untold damage than from her autopsy and the evidence of the different forms or orthostatic intolerances ME patients have? Low oxygen gives you brain issue!!

Her life should have shown us how to treat people with ME and respect those who have CFS.  But we still fight over a name because we have to see the wood, the trees, the branches and the leaves and all that live around and on them. A name matters to research! A proper diagnosis matters to patients and treatment!

Her life should have given us clues where to search to find some answers, her death should have shown us the way!

 Our bodies give us clues to our state of mind? I am appalled that how doctors are allowed to treat their patients and refuse to find causes. If you disagree we are still draconian enough to throw them in asylums and tell them to behave better? They write books to show how disgusting our thoughts/beliefs are and people read them and quote them? Mental health should be about understanding that chemicals released by the body affecting the brain and therefore thought process. They should be supporting not ridiculing? Or is that just me who thinks lobotomise and ECT were the wrong treatments for misunderstood coeliac to Alzheimer’s and goodness knows what else in-between! Have we forgotten history, do we choose not to learn, do we not take note of research and think hold on we could be doing harm here?

It is how they behave medically that upsets me- over 200 hundred families and many more are threatened by all sorts of medical and educational staff that they will be taken to court, that their children will be taken from them! When you fight them to get truth, treatment and research, you get hung out to dry in public or gagged and bound by establishment. If I go missing after writing this come and find me x If I get hung out to dry don’t stand and point and laugh - try to understand the truth behind the myth.

A list of doctors I have read or heard derogatory remarks from the establishment or whose good solid research gets hidden from the public from the PACE trial advocates, whom should have been sorted out in 2011:

Dr Myhill, Dr Speight, Dr Bell, Dr Montoya, Dr Ron Davies, Dr Mark Van-Ness, Prof Light, Prof Newton, Mady Hornig, Prof Kerr, and so very many more.

Worst of all those who stand up for ME sufferers to say Graded Exercise Therapy (GET) is bad for ME sufferers are threatened too? These brave Doctors, researchers and professors stand up in no man’s land to be shot at while the brave lay in droves in their near death beds.

Her life should have given the NICE guidelines changes to treatment accordingly.

GMC should have supported the doctors and this family in particular! 

As long as they keep you thinking that we are mental, whatever that means! As long as they keep you thinking we do not suffer real pain, we can be dismissed. You, whoever you are, are keeping physically ill people in rooms to be tortured by one of the most hideous illness known to man! It takes decades to die.

Severe ME Alert Please Check For POTS ME makes me SadMad!!!

ME makes me SadMad!!!

I have tried but have failed to find many Doctors in the public eye, or even a Paediatric Doctors to take the heart of ME seriously!

They refuse to listen no matter how hard you try. A parent and patient can tell you a lot about the illness you are dealing with but most will just turn their backs and close their ears and eyes!

I do wonder how MAGENTA or SMILE made it through the ethics committee and any doctor that understands ME would suggest that Wii fit a good thing for children. Children love a challenge and only too happy to play until they collapse, everything you read about ME stresses that you have to be careful with their activities?

Any child would love and over exert on such devices and they are told screen time is a red activity? If we do not fully understand this illness, but know lack of oxygen is bad why are these types of research allowed to continue?

Far back as 1986 Dr Ramsay put the involvement of cardiac system as part of ME and yet my GP does not or won’t do a stand test? Yet a nurse in a hospital can?

Professor Julia Newton, has a good understanding of Orthostatic Intolerance (OI). For our children however it is up to the parent to find this information and is incredibly hard to get it taken seriously.

It was the comedian John Bishop that demonstrated what lack of oxygen does to you. When he went through the training for a space station activity they cut down his oxygen so that he could see how it was out in space if something went wrong with the helmet. In those few minutes I would see what was happening to my son. When he is recovering from doing anything other than his baseline activity he goes through this, he can hardly remember his name or process a simple question like: 'Would you like some water'.

The NICE guidelines thought about including OI in 2010, they nodded only slightly in their guidelines by suggesting that a heart monitor should be worn when undertaking any form of exercise, sadly though no one does. I suggest it should be worn for daily activities to better assess the damage being done to heart and brain. What is my reasoning behind this? This is my son’s printout of trying to do a normal activity when I thought he was OK. No real warnings are given to us about the adverse effects of normal activity. Why is this? A simple thing of a friend coming round :

For days afterwards his HR and BP will bounce around, until this gets answered we will never be able to live a comfortable or manageable life. For a 31 mins of activity, whether we build up to it or not has to be stopped if we introduce another cognitive activity and doing a dot-to-dot has the same effect on his HR as running around the garden?

Now new research is coming out from Navioux in collaboration with Ron Davies. They have found that the Mitochondria can sense every kind of danger from the pathogens to changes. they detect a a drop in voltage caused by the diversion of electrons (NADG / NADPH) to make viral components of respond to broad variety of toxins. In this cell danger response (CDR)  the mitochondria respond quickly decreasing their oxygen consumption this prevents pathogens from using the building blocks of the cell to replicate and puts other cells in alarmed state and gets their defences up. This process seems to put the sufferer in a limbo existence and for some just about breathing.

Court Johnson puts it much better than I do and is always worth reading:

http://www.healthrising.org/blog/2016/09/01/metabolomics-naviaux-chronic-fatigue-syndrome-core-problem/

Any how the lack of oxygen is all around the body and I wonder how or why this fact that you can prove gets missed by so many GPs, and hospital staff?

Now if he was on the MAGENTA trial or the SMILE trial even though the Dr involved with ME experience and reports that she is trying to answer the question on recovery in children and adolescents, none of the children under her care are tested for any form of OI ?  Even though HR and BP have been one of the leading signs of ME for decades?

So how safe are these children with ME under the NICE guidelines?

None of her children; who are asked to increase their activities are given a heart monitor or their Blood Pressure monitored during activity or parents told what to look for with the recovery period. Even though this can and should be used as a handy tool to safeguard the body and ensure recovery. The now professor spends her time looking for activities without a safe method of monitoring her very young children under her care when no harm should be done. There are watches that can easily do this and I am sure that if they were used, useful information and monitoring could achieve good results.

So are these trials safe and is it ethical?

Oxygen depletion through the body and particular the brain does what damage? High blood pressure low blood pressure through the day does what?

It is left to mothers like me, to self-educate, when we do we are accused of all sorts of things including Munchausen by proxy. Over 200 mothers with children with ME and many more with Ehlers Danlos Syndrome are put through this experience and the Scottish parliament what control over our children given to teachers and professionals?

Many teachers, social worker, health professionals use |Muchausen by Proxy as an excuse to punish families with children that do not get better or attend regular school. If they understood and had heart monitors this would not happen so frequently.

One mother has been made to take her very ill child to a psychiatrist 4 times to prove what? Because the consultant wanted to prove the whole family were mentally unstable. This is a professional that is the so called lead in the field of ME? What numbers are kept on such cases? Should this not be monitored?

A mother of a child diagnosed with Ehlers Danlos and needed tube feeding was sent to psychiatric hospital and held there because they understood little about the condition. How does that happen, and why do not Doctors stand up for us? We have to be careful Unexplained physical symptoms are not just misdiagnoses from professionals!

My son was put on CBT & GET as prescribed on the NICE guidelines except for the monitoring of the heart and I was told he did not have CFS as he would have recovered on this treatment?

This is 2016 and way back in 1986 and just before he died Dr Ramsey gave the following definition:

“A syndrome initiated by a virus infection, commonly in the form of a respiratory or gastrointestinal illness with significant headache, malaise and dizziness sometimes accompanied by lymphadenopathy or rash. Insidious or more dramatic onsets following neurological, cardiac or endocrine disability are also recognised. Characteristic features include:

1)      A multisystem disease, primarily neurological with variable involvement of liver cardiac and skeletal muscle, lymphoid and endocrine organs.

2)      Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.

3)      Musculo-skeletal dysfunction in a proportion of patients (related to sensory disturbance or to the late metabolic and auto immune effects of infection)

4)      A characteristically chronic relapsing course.”

Research is and was proving his theories. So why was illness beliefs pushed as the cause?

So is it only me, that after the SMILE trial and no data published and after all the worry written to the Ethics committee does someone not ask for the data to be released. Why did not the people conducting the trial ask and respect the parents experiences on the SMILE trial and report it in their write up!

Why does no one look for the tell tail signs of connective tissue problems? This is the top of my son's leg and Dr Speight pointed this out as something to be looked into nearly a year ago! I'm still struggling to get a Doctor to look at this? Dr Speight is now reported to not uphold the holistic view of ME and is not allowed to talk about ME for the next 6 months? A doctor who cares about evidence punished?

These pink and sometimes purple lines show the skin is stretched, now this is on the outside of the body for all to see. What is going on on the inside? The connective part of his joints where he gets most of his pain. We are made up of connective tissue after all!

How many of our children are made severe because they are diagnosed early with ME, but also have POTS and given CBT & GET? Why do we hide the numbers or not record them? Especially when the PACE Trial is full of controversy? the researchers of the PACE trial would like us all to believe that Unexplained Medical Symptoms should be diagnosed when the medical profession are not sure what is going on. Each doctor goes on what he has been taught and at the moment they are encouraged not to test for things that have no complete answer or are complex, this can not be allowed to continue because so many people are left diagnosed with conditions that have treatment and how can we make strides forward if we do not strive to find a physical answer to medical problems?