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?

Intelligence is in the Eye of the Beholder

Intelligence is in the Eye of the Beholder

In 2011 a group of master weavers showed their Emperors of Parliament the cloth they had made for the NHS and NICE called Cognitive Behavioural Therapy - a mind over body approach.

They warned however that you must be intelligent, that you must believe, but most of all you must not test the cloth they had so expertly weaved and they themselves had tested, the results of which you would not understand, you vexatious lot.

So it came about that all who had been diagnosed from then ME to the now CFS were treated as though they were of a lowly intellectual ability, and were told their bodies could cope with normal activity, as it were their feeble minds that were incapable of life. All but a few questioned the master weavers, and looked on at the now barefaced authority with puzzlement. Those few that questioned; though with exemplary intelligence and world leaders in all that is right and true were told they did not believe because they did not possess all those qualities to see the cloth, you have to trust the master weavers!

How the master weavers told stories of madness, depravity and deconditioning of the body and how the few nonbelievers in the cloth were ridiculed for listening to the poor people that told of their physical suffering. How the courts threw out any suggestion the Emperors could be hoodwinked, while sitting barefaced in the cloth themselves. They would not listen to the evidence before them, they wanted to show how they held the allegiance to the emperors, and the emperors basked in the light of intelligence of the mind controlling the body. They banished the truth tellers and stripped them of their authority.

The master weavers bullied, cajoled and groomed the suffering masses into believing their suffering was in their hands, and as their dysfunctional bodies gave out, the master weavers ran away to hide shouting as they ran, it was a miss understanding, that their meaning had been twisted and that the unruly mob was baying for their blood. Silly master weavers, that so called unruly mob only asked for the truth behind the none existent cloth you wove, and for you to understand what recovery meant - getting back your health, as it has always been and forevermore mean!

The little ripples of giggles started to be heard, and the truth behind the cloth was seen for what it was; red faced a mass hysteria that began to grow through the master weavers looms. Would all those fed faces ever recover from hysterical claptrap the master weavers spun?

It seems sadly unbelievable but most silly stories are based on fact and I wonder how many children are miss diagnosed as my son was with CFS/somation disorder? No numbers are kept of children harmed by the NICE guidelines for treatment of ME. It seems the so called leading paediatric Doctor is under the influence of the master weavers and does not truly understand the workings of the Autoimmune system. ME is not in the family history of mental health it is in the bodies whole system  that lets the mind down! So SMILE and MAGENTA trials are a waste of charities time and funds! These two trials should show their full findings to all that ask, but are hidden under a veil of all in the mothers heads! But truth does not seem to account for much these days of fairy-tales and madness.

Our doctors can only treat if they are taught how to heal and treatments are tried, tested and robust enough for scrutiny by other academics and the patients themselves have the last word, for we are all individuals. I would suggest patients should be taken seriously; as how many illnesses have been forged as the patients depravity of understanding and hysteria to find that in the truth of reality, they are the body’s defences in overdrive?

http://privatemedical.xyz/psychotic-teenager-misdiagnosed-as-bipolar-had-a-curable-autoimmune-54353/

No one belittles how complex the body is or how difficult being a doctor is, but I do wish doctors would stop belittling their patient’s agony. Dr Ramsay in 1986 gave sound diagnosis of ME why then did we believe in the invisible and nu-provable "mind body continuum"?

Intensive Training When You Have ME

Intensive Training When You Have ME

Even with the intensive training and grit determination Angus never made it to his last day of primary school. He had two nosebleeds and yet another infection.

It would have been nice if the school had accommodated my suggestion that he came to the last 10 minutes of school, but schools have rules and I am too busy fighting every system that is supposed to support my son to argue. Life is not fair and people are busy ticking boxes with no real understanding of the true situation and if there is one lesson my son has truly learnt is that!

My son had been on intensive training for months and months for a big event in his life! Music on the Green in Stowupland! It is a simple village event that most would take for granted and think nothing of just ambling along to and having a pleasant walk around. Simply enjoying playing a few games, talking to friends and would just be part of the rich tapestry of life. For someone with a chronic condition, it takes planning and determination on an epic scale; that only Olympic athletes would understand. It sound grandiose put that way, but it is exactly how it is with ME.

First he has to get his body in tiptop condition. He has to eat the right diet for his gut flora and fauna to keep the bad toxins out of his system. A lot of food he takes on is because he has to, not because he enjoys eating them. Inevitably the foods he most enjoys are the ones his body becomes sensitive to. Eating no longer becomes a simple pleasure, but a war zone.

Next comes muscle stretching, he can’t move in the normal sense because of the lactic acid his body produces and his unstable and hypermobile joints. But stretching those tight muscles will help ease the day to day pain; well we hope, allow him some comfort when he moves - that’s the plan. Each day we gently go through these small stretches and have to take account of the energy it requires, even though I’m doing most of the work. It sounds absurd I know, but it is fast becoming the world we have to live in as one by one the normal becomes abnormal to his body. Someone with ME produces 20 x the normal lactic acid, so where a normal person can walk for miles before their muscles become tired and feel that familiar lactic burn, people with ME will feel it after a short distance. When they sit to recoup that lactic burn can last for days if not weeks. The acid does untold damage to their connective tissue. This connective tissue damage then affects their internal organs and we are only now beginning to piece it all together.

Car training, because his body has a hard time staying upright, he has to travel in strange positions to elevate the travel sickness he feels; so far he has not found a position that elevates his suffering. His heart does strange palpitations and his rhythm is all over the place and it is the same for his blood pressure. This work horse of the body is like an out of control stallion and runs away with any normality.

With true grit and determination to cope with whatever his body throws at him we made the very short journey to Music on the green. He took control of his excitement as best he could which is not easy when you are 11 and not often out and about.

The first part was held at one o’clock and was a track event of charitable stalls and fairground rides. He won two hammers, a smiley bouncy ball on a string and beanbag in bucket competition, Whoop Whoop! He then rested for four hours on his bed to recover his energy, while his heart rate and blood pressure went back to normal. Then with extreme effort he picked himself up for the big event!

We got there and his friends came to say hello which cheered him on no end bless ya all xxx the heavens opened and cold and wet and bitterly disappointed we went home!!! You can't win everything in life!

We are back in training so that he can attend the last day of primary school! The pain and training will be hard but he is one brave fighter!!

After music on the green he came down with two infections and suffered nose bleeds. Unperturbed we carried on training but a visit to the doctors has put him back yet again. He has suffered nose bleeds and being tested yet again for infections. His body is not recovering in any tangible way at all.

It is one of the hottest days of this year and instead of his normal resting pulse of around 96 he is back to a resting heartbeat of 115. So tomorrow we are faced with a dilemma that we face on a day-to-day basis-that is to say what does he need to do and what state will his body be left in after.

Does he have to go to school? Well I think to say goodbye to a class of children who he has no contact with for the last year is one of those situations that it’s hard to give an answer to, it is the conundrum that ME always puts you in.

25th July 2017

We have to accepted training does not work, nothing allows his body to sustain energy. A year on and even with our best efforts car travel is very difficult. 

I have lost faith in NICE, they are just a front. They refuse to review the guidelines and would rather take the word of research that is both harmful and flawed with vested interests. Even though there are 9000 papers login the damage in the body, there are no random trials so they don't listen? Makes no sense. If it is hard to work out what is happening maybe it is too early for trials? You cannot fix a car if you don't know the problem?

The NHS is just a commercial concern, that turns its back on difficult issues and bullies others.

Angus would love to see his brother off to Australia, but the journey would hold him back so that the beginning of the next school year he will not be ready to have his weekly lesson.

He does not want to make plans for when his brother comes home; because this illness takes all life away from you, disappointment is hard to live with, when it is all you have. But he wants more! More than anything he want to travel to London and go to Harry Potter world with his family. It might as well be outer space to him.

I sit cutting out pictures of a life I once had, for a party we are throwing to wish my eldest son all the best in his placement in Melbourne. I think how to get the best out of the time we have before he leaves. Angus is preparing himself for the fun he has lined up for his brother involving Nurf guns and water bombs and I breath, you have to learn to float with what ever you have, to keep you from sinking.

I have to accept training does not work, and not until we know how the body fails, can we begin to piece back together the energy pack that is need to live.

Until then we are learning to float in a pool of hope and love

The Freedom to Work - Yes Please

This short story still in its rough form is dedicated to Nicki  and Cathy and all those that have to chose to suffer in silence.

Freedom To Work

Yes Please!

I’ve been living in this flat now for almost six months, and each and every day I get a quick hello from my neighbour, who then decides to come round for coffee, unannounced, with her cat!

Now for some with the simple freedom of choice and with a “normal ability to live”, they would think this innocuous and what appears to be friendly, neighbourly thing to do, a charitable and much needed contact with the outside world, especially for someone who is chronically ill like me. So do I, well in a way. You see the problem I have is that I don’t have the freedom to walk away. I’m pinned down by a body that can’t. I have to say and be lectured everyday about how working could improve my spirits – I don’t need to be told this, I know this. My mind craves difference and when I give it a go, something pulls the plug on my neurons and I am left with intermittent thinking, of the fuzzy kind, no crystal clear thoughts for me.

She explains how the money would give me the ability to live so that I no longer live in squalor! Yes she actually used the word squalor! As if I am some complete moron who never gave that a thought! What makes it so awful and wretched is that she is right, it is a squalid flat! What can you say to that, how can you defend yourself? You see, each night someone, while I am asleep pumps my body with lead, seriously I’m not kidding! Some days just looking after my own hygiene is all my body can take. Innately I am a very organised and tidy person, squalor makes me depressed.

Anyhow I bet even a saint would lose their patients under this much scrutiny, and believe me I’m no saint, nor would I want to be. I’m more of – live life to the full type of gal, why walk when you can dance, why dance when you can rock?

I’m rocking now, although I’m not entirely sure if I’m rocking to get out of the chair Sam sees me as she walks to work or in pain. I just don’t want to face that encouraging smile this morning; I’m not in the mood! My halo has gone missing! But I’m too late; her face is at the window of my bedroom.

‘Morning Katie, How are you this morning?’

‘I’m fine, and you?’

‘Oh I’m loving the spring, perhaps we can go for a walk when I get home - blow a few cobwebs away, make you feel better?’ I slap a smile on my face and she is gone. I know what I would like to blow away.

‘I don’t want to think how I am Sam!’ I grumble and groan as my body adjust to the upright position. I close my eyes as the dizziness kicks in. It makes it real, and I don’t want my reality to be all there is thank you very much – I want to live in a dream world of fluffy clouds for as long as I can. I look across at the time on my phone, ‘I bet a get a shimmy on, my mum will be around in two hours and I haven’t even brushed my teeth yet!’

As I had feared Sam came round that evening, she promised she was on a flying visit. I know though she is trying to get me out of the house as promised this morning. I told her I was waiting for company so now she is waiting to see who that could be. She sips at the coffee that I have just made her. Which means: I won’t be able to finish the prep for my evening meal – I simply won’t have enough energy to do it now!

Sounds stupid doesn’t it? You can’t explain it to anyone who has no difficulty in moving, their blood flow, breathing, with their energy all being normal. Looking at me I don’t look disabled. I ponder on that thought as the devil cat winds her tail lazily and lovingly around my leg. I tense up, not because I hate cats but because I know what is coming, but I don’t know when. The pounce of the Duchess the devil cat is always unpredictable and unprovoked.

‘I saw you out at lunch time with your mum. That must have been a nice change for you? Made you feel better?’ Duchess devil cat jumped upon my legs and purred comforting soft velvet purrs the kind that makes you sleepy. Her warm soft fur comforted my knee joints and a connection was made between animal and human.

‘Yep’ I false smile into my hot chocolate, no point telling the truth. I remember my mum’s face when she took the full force of abuse hurled at her this morning. You see I have a disability badge; it took two years to get it! Even though I am house bound, I still have to go to see the GP, and there is no parking nearby, and the journey alone will make me so sick it will render me bed bound for the next week or more, apparently I still did not constitute a badge! I refuse to use the wheelchair, so it makes it worse. You see the whole process of getting the badge and Department Work and Pensions forms and interviews; they insisted I attended, not only put my health in jeopardy but made me feel worthless.

The process of losing all your function after you do any daily living, is innocuously called Post Exertional Malaise; PEM for short. It is more a kin to having a heart attack or stroke though; as my body closes down to conserve the precious oxygen my body craves. Because my brain is constantly starved of oxygen when I over do things. My body just cannot utilise oxygen or energy, every system in my body is compromised. It is a hard concept to get your mind around. My mum has been a rock for me and she has got her head around it, but we are all allowed to lose it from time to time, my mum lost it big time today.

‘Where did you go?’ Sam asked. I didn’t want to say disability aids, so I lied.

‘We fancied getting so good underwear but we were naughty and brought the most glamorous frilly knickers’. I wish my life could cope with frilly knickers I privately thought. ‘We are fed up with the Polk Dot bloomers we normally get’. She had to gulp down the coffee; she had been daintily and slowly sipping! I lowered my eyes as I smugly smiled into my hot chocolate.

My mum’s beleaguered face haunts me, her frustration hurts me. I had just finished my degree you see when I was struck down with a virus that left me this way; I was diagnosed with Chronic Fatigue Syndrome, the most hated condition of modern time, with I have to say the most stupid and misleading name. Fatigue, everyone has fatigue and I wish it was just a case of fatigue.

My mum was so so proud of me at my graduation; all those struggles to get me through Uni were worth it she told me. My job was to die for, and I would have if my body had let me. We value ability is highly prised; I have no ability, so I am worthless? Today for the first time I felt worthless to my mum. All her dreams had been shattered, they had splintered like a mirror, we only caught glimpses of our former happy self’s. Mum had to give up work to look after me; she lost most of her friends and a life she loved.

Sam drew out of her bag my latest prescription, it was a trial medication and I could see she was itching to ask questions. Sam worked at the Health Centre; she was the softly spoken dragon that refused to help in a helpful manor that mirrors her personality. This job perpetuates her belief that she is a most helpful and understanding person. I’ve seen people staring at her in disbelief at the reception with the comments she comes out with. It makes me smile; I am not the only person she does this to so now I don’t take it so personally.  

‘Would you like to take the cups in the kitchen, I’ve finished my coffee.’ Sam encouraged me to move. I bit my tong but –

‘No that’s Ok Sam, just put it on the coffee table next to you’ Duchess digs her claws in very painfully. As I knocked her off my lap and Sam was about to protest the door opened, and in walked in Peter and his crew followed by Dr Burns.

The suit was amazing, worn under clothes you could not tell you had it on. Even I was impressed with my design and I don’t get impressed with myself very often. The head band was the same and I marvelled at the lightweight and complexity of it all. A small app was transferred to my phone and Sam was bristling with pride that she knew me, which was a first! She was visibly astounded when the whole team congratulated me and said they were in ore of me, considering my disabilities and how much thought had gone into the concept.

‘We have all had a go with it, and boy - were we pleased with the function. Not all of us could cope with wearing it though’ He looked over to Dr Bures. ‘Possibly a couple of tweaks would be needed after someone with a non-biased opinion could be found.

Well what would you do if you were in my position? Would you take full advantage of it, and put your neighbour forward - an ability to get the truth over let alone some well-earned revenge? Well I didn’t have to worry about that, as though by magic with Sam jumped up and offered herself as a guinea pig.

‘Although there is nothing that could compare with what you go through on a day to day basis’ Tom looked at me with such earnest eyes that it made me bloom inside. ‘I think if we did anymore it would be torture for torture sake, and not research practical.’ I have always loved Tom, from our first lecture together. His like a universe of possibilities.

‘Dr Burns was going to take part and as kindly agreed to ask his staff, if they would like to take part in the trial.’ Tom sparked interest in Sam in more ways than one and she took the suit and bristled up to her full height of 5ft nothing, patient high heels, formal skirt and diamanté hairclip in her perfectly plated blond hair, leaning into Tom.

“What a splendid idea Dr Burns”, Sam’s smooth as treacle and sweet as acid voice oozed something like sincerity; which she may later regret. I understand how this illness is.’ Dr Burns looked over to me puzzled. ‘I live next door to Kate; I’ve taken her under my wing’

‘Smother me more like’ I grumpily whispered out of earshot of Sam.

‘I think we should all have a go with the suit, so we can truly understand how it is for these poor people.’ Big mistake lady I thought to myself, as her condescending ways got stuck in my throat so no worlds came out. She had asked no further questions, silly woman.

‘If I try it on now and give it a go, then you can tweak it and the sooner we can start to trial it out’.

‘Splendid beamed Tom.’ I opened and shut my mouth. I should warn her?

Now the thing you must remember of Sam, she has a condition which she equates to every other long term illness since she found out about it. Now, I would not belittle anyone’s condition, but just having one condition does not give you a right to say you understand, or give out the impression you would be able to take on any illness and work through it. You can see my dilemma can’t you? Should I go easy or should I ramp up the ‘muscle cruncher’?

They took great pains in explaining how the suit works, now that she had it on. The electrical currents to simulate the pain, the tightening and how it took impulses from the brain to collect data, how the joints had sensors to show instability and how that affects lactic acid expression, the heaviness of the thin material and how they could control it. She did try to ask how light material can make your bodies limbs feel like lead, but she was no geek and they were off the geek Richter scale. They did explain that they could only cope with 7 on the pain dial app themselves. The dial went up to 14 which is about where they thought my pain was at. I saw a flicker of I’ll show them how it’s done, dance with glee across her face.

Sam was giddy with her own importance, and eager to show everyone including me – probably more me, how she was a trouper and could carry on regardless. They explained with equal puppy dog excitement (that Duchess seemed impervious to) that their aim was to get slowly go up to a 7 while taking notes at each stage.

“It’s just like spandex hold it all up, tuck it all in and give shape underwear” she followed her shape from boobs to hip. Who could blame her with these dishy intellectual types all around you. Sadly for Sam however, her timing was off, they were too engrossed in the app on my phone. All of a sudden she squealed, and went cross eyed. I tried to stop myself from a giggle, but the corners of my mouth curled into a smirk and the giggle bubbled out.

‘Perhaps the inside thigh should be modified?’ I suggested

“What number have you got that on” Dr Burns asked suspiciously. I looked down as I was not too sure myself, they all looked at me clipboards in had for the answer.

‘Two!’ I replied blankly.

‘Two? Are you sure?’ Sam’s eyes were sort of watering. Simon and lead researcher unceremoniously stuck his hand up the sleeve of the suit.

“Yep, it’s a two; crank it up two more, than we will leave it for a while, see how she copes.”

I did as I was told, but instead of the pleasure of showing someone how it feels, I felt and pang of uncertainty as I saw the familiar pain flash over Sam’s face.

“No that’s OK turn it up to the” Another ripple of muscle contraction took the breath away and she held out her hand to steady herself against Simon.

“Just go for a walk hold onto me so your body can adjust to the sensations.” Simon suggested.

We all held on to the childish giggles and comments as Sam walked out of the flat and onto the street like a person constantly hit by a lightning bolt.

They all decided to make a cup of tea while they were out walking and adjusting. We sat drinking and nibbling while talking about the technology and what it would do for the medical staff with their teaching, about other chronic conditions. How it all brings a new dimension to care. They all thought that my idea of being able to process the information gathered by the sweat on how the lactic acid and the heart behaved was - a genius way of gathering and furthering research.

Out of the corner of my eye I could see Sam walk like a cat on hot bricks, the sharp intakes of breath, closing of the eyes and pausing to gain the will to move again.

“Perhaps we should get her out of the suit and make sure it is working properly” I suggested. Perplexed they looked over to me, then out of the window where Sam was teetering in high heels, unsteady and shaking her limbs. Duchess was following looking confused at her mistress, sitting down and looking around and I felt certain I could see the cat’s eyes roll.

Two days later they had the data from Sam’s trial in the suit and they had tweaked it, so that lower settings were incorporated with differing incremental settings for many other conditions and individual tolerance to pain.

Sam had not been round to see me in those two days since she ore the suit, and was frosty towards me as she went to work in the mornings. Today was not a good day for me the PEM had kicked in big time. Tom had been my constant companion. He had said that they had caused the relapse in my condition, the least they could do was support me back until I was better.

They asked Sam to try on the suit again. I could see the horror on her face, but she became my hero when she silently took hold of the suit again. But it was her words that grabbed me the most, when she looked at me in the eyes with determination and grit.

‘I’ll be happy to’ and as she passed me she touched my shoulder and privately stated ‘I have the freedom of taking off the suit, others don’t.They don't have the freedom to work’ She squeezed me just a little and there just right at that second I lost the ability to fly on a dream cloud, as a reality sunk in, but I gained another hero and a true friend!

Children with ME may look normal, but you would not like to run their race for life!

I was asked a very good question from a friend’s daughter a while back. She had asked her mum what is and how does ME (Myalgic Encephalomyelitis) effects Angus. I found this hard to respond to for a whole range of reasons but most importantly because the medical profession and researchers haven’t had enough opportunity or funding to research, so therefor cannot give a definitive answer to the question.

ME is a complex, acquired multi-system disease, with profound dysfunction and dysregulation of the neurological control system; notably the immune and endocrine systems, dysfunction of cellular energy metabolism and iron transport, with cardiac impairments; well how do you explain that to a eleven year old? Well it’s a bit tricky but I’ll give it my best shot.

OK imagine it is sports day, and this year they have decided to make things a little more equal for the children with ME. So they have given the children without ME, weights on their arms and legs; you know the type that strap on with Velcro. This is how my son’s legs feel all the time - held down by weights that sleep does not refresh. There is a peg for their noses, as ME Sufferers have a problem with the flow of oxygen, and a tight elastic band on their head, headaches are a major problem for Angus and many ME sufferers.

So - imagine walking to the start line with all those constraints. It will take a little longer than normal and you will already be feeling the heaviness in your legs and breathing will be a little more difficult, but you  line up at the beginning of the obstacle race. There are sacks, egg and spoons laid out at intervals, you have will have to put stones in your backpack at these intervals; to simulate the lactic acid burn that ME gives you. At the end of the race you are given a sticker and told to sit down until the next race.

Remember you still have a peg on your nose and the stones in the back pack with weights on your arms and legs and a tight band around your head, sitting still is starting to hurt. You're not allowed water; ME children get more dehydrated, so it does not matter how much water they drink they still get dehydrated. You are then asked to line up to run the next race, after which you have to do a maths test. Because of the lack of oxygen and dehydration you are finding it hard to concentrate and your head is hurting. Now imagine how you would feel to do this every day, never feel as if the stones and weights are lifted and even after days or weeks that muscle tiredness or spasms that comes with over exerting don't stop aching.

It seems unbelievable and unkind to make children do this! But this is how a child with ME feels every day they go to school. Playtime is both physically that challenging, but because you cannot see the weights on their arms and legs they are never taken into account. We cannot comprehend how it must be. This though is the comparison of how ME affects the body, in just one part of the multitude body parts that are affected by this illness.

Unfortunately the medical profession are not taught about Post Exertional Malaise (PEM) or as me and Angus like to call it Post Activity Increase in New or Severity of Symptoms (PAINSS). PEM is the dividing characteristic or diagnostic criteria for ME.

The child with ME does not have a peg on their nose, no weights on their ankles or arms and no heavy backpack on their back for people to see, ME is invisible and children look no different from healthy children.

The only publicised research is about activity. I find this astonishing when you look at the research into the damage done to their brains and know that a buildup of lactic acid is 20 x that of a normal person, and yet the NHS fund exercise research on the young children that struggle? This however is for another or many other blog posts, which you can find on my page.

Please remember ME children hidden in rooms with an invisible peg on their nose, weights on their legs, tight elastic bands around their heads and heavy backpacks that never come off. They are true heroes that learn to live a restricted life, against the humiliation forced on them by a few.

We need biomedical research and we need it now!!! For all the 25,000 children who are #MEheros

Children with ME may look normal, but you would not like to run their race for life!

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 

Of All The Silly Things

Of All The Silly Things

Of all the silly things they get you to do, bouncing on a ball while you’re eating your lunch has to be the most bizarre! Concentrating on your inner core, chewing while laughing has to be worth more than just an orange on your activity sheet?

How can I tell my teenage girl these people know what they are doing? That our government have our best interests at heart? It is blindingly obvious they do not! These silly ideas may look good written down on a sheet of paper, fooling people it will make them better, but in practice it is life threatening and I do wonder if they had a health and safety check on it. Before you all roll your eyes and let out the exasperated steam of boredom. Bouncing on a ball while eating, honestly, it doesn’t take Einstein to work out the equation for the consequences to that one.

You may ask me why we keep listening to them. I’ve asked myself that many times. You have to remember we are very desperate and we thought we were going to professionals in their field, not a load of monkeys wanting to enjoy a tea party, paid for by government! I’m not bitter, just gob smacked at the systemic stupidity!

It’s not the first time we have been forced into activities that we don’t understand the benefit of. There was that time they told me to get my daughter interested in the world around her. To get her to move around the house, which they considered was the first step to reengage with the world. You do this by doing the housework? They said it constituted an orange on the scale of energy needed. They smiled at us as though we could not understand the concept, and just needed to get on with it and they would be proved correct.

First issue I have with this is; housework – to get you interested in the world around you, really? My daughter does not have OCD so what joy of doing daily necessities would she derive from cleaning? OCD does figure in ME apparently, I suppose it depends in which area of your brain that has been affected; after all it is a neurological disease. They have always known it affects your brain, but do they understand the brain? That’s the question, from my experience, no they do not! Only recently some researchers have devised the right techniques to produce the imagery of damage caused by ME. Not all hospitals have the right equipment though and then you have to have the right person to understand the imagery.

Anyhow, for most young; bordering on teenagers would not reengage in the world around them by housework. I have to admit housework turns me off in life and against most of my family. I’ve seen to many mould festering plates and smelly football socks.

Dust and chemicals are known to affect ME sufferers, so I really don’t understand this, one little bit. I did start to wonder about the clinic we were attending. The person telling me how good this would be for my daughter looked more of a party animal than a home bird; I don’t think she would be too impressed if she was given this to try, I think she would look as stunned at the suggestion as we were.

Secondly they obviously did not watch “Trust Me, I’m a Doctor” out of all the gym activities housework burnt the most energy. The energy that would be used the most would be indignation though! And this is never taken into account! I think I would feel belittled and indignant if it was offered to me as part of the treatment for a disease that offers more pain than when you have run a full marathon, by just going downstairs! When energy is in short supply, do you really want to waste it on housework!

Rosa had always been brilliant at helping me out around the house. As a treat on a Saturday we would go out shopping, as a way of me saying thank you for all her help. The sadness of this particular suggestion brought home with a sledge hammer, how bad things had got and how much M.E had taken from our lives as a family. Going into town was a weekly treat, window shopping and then coffee and cake. Somehow these people are blinkered, and don’t understand people or their lives.

She also has a dust allergy and would sneeze; I wonder how much energy it takes to sneeze? I smile at the image of their reactive faces if I wrote that down on her daily activity sheet? I would say five sneezes would constitute a red activity. I wonder how that constant allergy would affect her body though.

I know it’s not for the fact she wanted to withdraw from the world, I know my daughter, but that she is simply too unwell. They insisted though, that it was the same for all CFS patients, it was part of the illness this deconditioning malarkey. I don’t buy it, but they should know better and in the beginning I was not listening to the people who had been through the system before us. The professionals had clouded my judgement about them. We were different and how could movement, talking, enjoying life make you ill? If you are happy and look to the future, it stands to reason that you will be OK. Little did I know back then!

Threading beads was another activity and when Rosa, then 10 asked what the point to that was, we got a reaction, which enthused the psychiatrist to write franticly down in her notes. We looked at each other with a silent conversation carried through widening eyes and wobbly eyebrows. These conversations normally take place when we meet with the medical team. We would discuss afterwards what a criminal psychologist would make of them all.

Let me just say it again, threading large wooden beads on a shoelace? When you’re ten? Slightly demoralising? Belittling? This is the treatment we deserve for a totally knackered body, immune system and every other system within your body? Even if they were to suggest making jewellery; which I did think of, it would not work. Threading beads sound innocuous but, you have to think and manipulate kinetically, this would take two energy factors, and yes, it gets that basic. 

Colouring books came next. The type that are used for stressed people. It is to put you in a hypnotic state and has been proved to help with brain flow, brain mapping and stress. So we gave it a go. The thing they just don’t get, is the pain and stress on joints when you are trying to do anything when you have M.E! A lot of M.E sufferers have hypermobile joints that hurt, and when you have a disease that also attaches them, this pain is doubled. After an activity, whether you enjoy it or not, you are left with more stress and energy burnt. They don’t listen or look at the individual they just give you silly things to try that sound half reasonable, hoping you will go away and get better. If you don’t agree with them and don’t get better then they start throwing accusations around.

Now most of these things are girly but friends of mine that have boys with ME are treated the same. Now don’t get me wrong I’m all for equality but it don’t work does it?

Doing crosswords and word searches was the next thing. This was suggested at the time Rosa could hardly see most days, she was dizzy and felt sick. Cognitively she found it difficult and this is one I never tried with her. Again it is to do with the brain and its function with lactic acid eroding away the brain cells.

So when they suggested the exercise ball, I didn’t think anything of it. I did question eating while you were on the ball, but they insisted that it would take Rosia’s mind of the pain of exercise, to help with her avoidance. It was useless to say that her reluctance was not due to her not wanting to exercise and that she was aware that new exercises brings aches at first; she was a gymnast. They just would not believe she would suffer the next week or so that pain would increase and possibly leave her bed-bound.

Well it made us giggle; there we were rotating gently as we made sure our posture was correct so that our inner core was correctly engaged, while eating a chicken sandwich. We tried not to laugh. When Rosia reached across to put her plate on the side of the coffee table, she had over reached and cramp had set in. Cramp is a constant problem for her muscles. The ball slipped and piece of chicken had got stuck in the back of her throat.

After I had performed the Heineken manoeuvre, she had been sick and I had given her pain relief, I vowed I would not listen to any more silly ideas. I knew however, they had the power to take everything away from us and make our lives more miserable then it was already. That to have the letters to the school to enable Rosa to be home tutored, so that she reaches her goal of becoming a vet we needed to keep the silly idiots on our side. You have no choice but to try!

She was bright, she was breezy, she was incredibly silly, but she was all we have, so we sat there with our eager faces on, in our multi disciplinary group meeting with our engaging persona, not daring to look at each other.

“Well Rosa the last time we met we discussed your efforts to get back to normal life how did you get on?”

Eager eyes looked over to her, I held my breath.

“Well it made me wonder?” They all lent in for the revelation, the breakthrough they had all been waiting for, she paused longer for effect. “About your health and safety record! Because eating while on an unstable surface is not the right thing to be telling your patients.” Their faces dropped into expressionless professionals, “however the trip to hospital” again she paused to draw out the full impact. “To stabilise my condition was worth it, I met a rather thoughtful and considerate junior doctor, who has found I have PoTS, Hypermobile joints and a problem with my heart, alongside my M.E.”

Their faces were blank, none of them believing what had just happened. M.E is defiantly the chronic illness that just keeps on giving.

The End

Emotions have been hijacked as propaganda to show M.E sufferers in a very disparaging way. What they forget to mention is that laughter, happiness and excitement are all activities and can change the chemicals in the brain, they also have an impact on the energy of a person with M.E. Sufferers know these emotions affect them, just as much as being sad at your predicament and anxiety that comes calling for no good reason and out of the blue.

A multi-disciplinary team must mean that, and it must be led by medical factors firstly and psychiatry secondly if psychiatry is needed at all. Your physical health has a direct bearing on your emotions.

David Tuller, a public health journalist found flaws in the trial which meant it should never have been published:

https://www.youtube.com/watch?v=IGaUBE2RrSw

This was taken from the EDHS website:

A few patients diagnosed with somation/CFS/ME could have Ehler-Danlos Syndrome (a connective tissue disorder)

 http://www.edhs.info/#!symptoms/c1qvq

Patients who truly have Myalgic Encephalomyelitis (ME) do not benefit from (and could be harmed by) inappropriate exercise.  Exercise therapies can leave ME patients far more severely ill than they were before and sometimes in need of emergency care.  ME patients that are able to rest adequately in the early stages of the illness have the best prognosis. ME patients must strictly avoid overexertion to have any quality of life.

Taken from the Voices from the shadows:

http://voicesfromtheshadowsfilm.co.uk/me-cfs-and-research/

The dominant view promoted by the UK Government through its National Health Service, Medical Research Council and the Science Media Centre, has long been that although ME/CFS might initially be caused by a virus, accident or stress, the long lasting debilitating illness these patients suffer is, they say, merely the result of physical de-conditioning caused by a fear of activity or exercise and over-attention to symptoms. This claim ignores the large and growing body of research demonstrating a severe neuro-immune physical illness. It has had devastating consequences for patients as well as for doctors and researchers supporting a physical understanding of the illness who have been threatened with losing their jobs and in some cases have lost their jobs. An explanation of these contrasting views can be found in “Chronic fatigue syndrome: Harvey and Wessely’s (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways” by Michael Maes and Frank NM Twisk at www.biomedcentral.com

For many years several million pounds worth of MRC research funding for ME/CFS has been allocated to studies run by psychiatrists and psychologists examining the usefulness of different combinations of management programmes more appropriate for behavioural and psychological conditions. These are cognitive behavioural therapy (CBT), which was  originally developed to treat depression, and graded exercise therapy (GET) which is also considered to be a valuable treatment for depression and de-conditioning. These ‘treatments’ for ME are actually management programmes. They are used extensively to support patients receiving medical treatment for illnesses such as cancer, whereas in ME/CFS these behavioural management programmes are being used as a substitute for proper medical treatment. Alarmingly these recommended ‘treatments’, particularly GET, has been found to exacerbate illness and increase disability in many ME patients, sometimes resulting in lifelong total incapacity. (Further reading can be found here: www.ncbi.nlm.nih.gov & www.iacfsme.org) There is a video from the ‘FDA: Development of safe and effective Drug Therapies for CFS and ME’ workshop with Prof Chris Snell an exercise physiologist talking about the objective measures that can be used to assess patients severe disability. Here on Day 2 Panel 3 

Lactic Acid and the brain

http://www.cortjohnson.org/blog/2016/03/01/lactate-fibromyalgia-chronic-fatigue-syndrome/#

Shungu believes the increased lactate levels he has twice found in the brains of ME/CFS patients may result from reduced oxygen levels. He believes increased oxidative stress may release substances called isoprostanes which restrict the blood vessels in the brain. Those constricted blood vessels result in low oxygen levels (hypoxia), anaerobic energy production and the release of lactate.

In a small study Baraniuk subsequently tied increased brain lactate levels in Gulf War Syndrome to reduced cognition.  A subset of GWS patients with increased brain lactate levels prior to exercise demonstrated significantly reduced cognition after exercise. Baraniuk attributed the cognitive decline to the brains inability to utilize the lactate produced by the muscles during exercise.  The inability to use the energy resource that lactate presented resulted in the brain using anaerobic metabolism to try and meet its needs.

http://www.nhs.uk/Conditions/postural-tachycardia-syndrome/Pages/Introduction.aspx

In PoTS, for some reason the autonomic nervous system doesn't function properly. There's a drop in blood supply to the heart and brain when you become upright.

In an attempt to compensate for this, the heart races and the body produces lots of the hormone noradrenaline (one of the hormones that prepares you for "fight or flight").

So what happens to people with oxygen levels that are taken from their brain for many reasons?