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?