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?

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

How to Control The Pain

When You Are 10

With ME!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dr Speight Helped us to understand 

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

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

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

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

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

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

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

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

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

Playing Football with the Dog

Playing Football With The Dog

I miss my son when I play football with the dog. I can still hear the laughter and the growl as boy versus small terrier took place. I let my mind take me back to those moments in time. As I wind my way around the garden, with my son’s image following me. Before I could control those images of time that has passed, a soft sadness wrapped itself as I took a look at the landscape I once loved and enjoyed.

I turned sharply to avoid the capture from the frenzied ball of fluff, when I slipped on the freshly made mud, as it splattered up my face, my foot sliced open the sludgy earth and I knew I had to make ready for the squidgy impact. I started to laugh and was still chuckling, impressed that I managed to evade complete coverage. But that joyous echo of fun and calamity was hollow and empty. I stood up slightly stiffly, what a silly thing to do and such a mess to get yourself in. Slightly bruised in ego and thigh, I looked up to my son’s room and saw a shadow in the window.

In those webbed and filtered moments my son and I had spent together, spinning a dazzling history, I could hear what once would have been his sarcastic retort at my incompetence to stay on my feet. The shadow disappeared and Amber had got over enthusiastic, bouncing up and down splattering mud and barking at the ball. I wanted to retreat into the house, having fun with free movement just seemed so wrong.

Amber had taught my son how to tackle with finesses of speed, with the agility that a professional footballer would be proud of; he had shown great promise and had been spotted by a local team coach, before tragedy struck. My son’s presence was on every blade of grass, I could no longer stand the emptiness. Amber sat down and looked at me with her crooked cropped face; note to self, let the dog groomer do her job!

That little dog had more empathy and understanding than most of the medical team we had met. They seem to be willing to let my son just fester in pain with no real understating of why. I attentively start to move and look at the mud pack on the side of my leg. Perhaps that was a little unkind, in reality because of the history of ME they were wrongly informed by those that did know better, but out of profit and gain promoted that it was just a case of getting your mind over the fact your body was or had been ill. You try to say otherwise you are met with a caustic reaction. Mental health in this country is being let down. Explore the physical and you are half way to healing the mind. Addicts throughout the ages have taught us that. Understand the withdrawal and how that has an effect on the chemical changes in the brain, and you can make miracles happen.

I breathe in deeply as I pass all the medals in the porch and touched them with the sadness I felt. I must get lunch I sighed, so I went to clean myself up. It was no good; the mud was so extreme I’d have to have another shower. I sighed with a downward glance as Amber wagged her tail up at me. The sloppy sucking motion of the tunic I had been wearing clung to me as though it did not want to let go, and enjoyed covering me more with the gooey stuff. Amber was now waiting in the spot where the water falls in the shower. I looked at her as she turned her back to me and water stared to power wash her body. I rolled my eyes as Amber tried to bite the flowing water, but as soon as I stepped in she calmly waited for the soap.

Disasters come in differing forms, for different people, don’t you think? Someone’s disaster is another’s slight inconvenience. One person’s pains are another’s insignificant discomfort; we all see things differently and cope in differing ways. Most days I can put the past where it belongs, shut it away and look to the here and now as researchers don’t know what my son’s future holds, I have learnt not to look too far ahead. But bad days start with those times in my life when what used to be insignificant and such a part of life you rarely thought about them. They are now the ones I long for, those insignificant happenings have become those which mean the world to have back, as my everyday reality. I smile as Amber lies under the radiator to dry herself. While I dry myself down and change my clothes.

With determination I put on the radio and clean the area to prepare the food, my hair still wet and limp. A couple of years ago I would never have dreamed of letting my hair look so un-kept and free. But who was here to see or care.

Once a great joy of mine, I would indulge myself in preparing a meal that would be eaten with gusto, each bite swallowed without a chew, I would scold him and he would shrug his shoulders. Indigestion was nothing to be afraid of, just a burp to resolve the discomfort. Coeiliac is part of the autoimmune picture I try to paint with eloquence to educate the people I know, but end up painting unsightly blobs they don’t understand. With one autoimmune inconvenience came more, with his ME we have found many lurking in his tortured body.

I become aware of the conversation between interviewer and promoting psychologist, the kind and friendly way she spoke, that put across the plight of these poor people and how they could simply improve function by moving. I could hear the presenter of the program taking the bait, of just need to re-educate your body back to health. The specialist that was reportedly the expert with regards to ME, was as sweet as acid on an open cut, in her narrative.

One vertebrae at a time, prickled with the dismay of it all. I shouted at the radio, “their bodies produce twenty times the amount of acid in their muscles than normal people, you should know that! Lactic acid causes damage to their brain, don’t you know!” But they didn’t hear. Somehow the science is not getting through. Mental health being a buzz word at the moment, “we are all mental, all dealing with problems in life. Few of them can be resolved by thinking that the world is fine and dandy.  You need to physically resolve the issues and kind people to support you while you deal with  the shit that is left!” The words bounced off the walls.

I remember reading the psycholobabble when my son was first diagnosed. These people with the power to control everything to do with ME astound me! The lengths they would go to and the harassment they give out. How they were allowed to do that and how stupid they are.

Coeliac was to do with modern day demons they explained. This explanation fed into our, “bless these poor unfortunates” reasoning of mental health; they convinced crowds of doctors and politicians, who were only happy to comply. Don’t bother doing test on these poor people, you will be feeding into their belief system that they are truly ill? Researchers should understand the damage they are doing to these poor people, giving them reason to stay ill instead of working to be well! Everything to do with your body can be controlled by your mind, don’t you know, strong mind and stiff upper lip, is all they need!

I am sure that if they said that broken bones could be healed by the patient’s own determination, our government and the NICE people would wholeheartedly believe them. We all like to think we are in control and to blame lesser mortals who don’t happen to get better, as if it was their own weak will that was to blame!

I enter my son’s room, just as he flings into flight landing on the bed making a duvet angel. My stunned face looks down on a face of a zombie like child, who just can’t help himself but to live and get the most enjoyment out of life he can.

Mind body continuum does not figure in his life, psychosomatic behaviour is nothing to him, control over his world not given a thought; just the need to live life to the fullest he can, whenever and however his able. You have to admire him.

I thought, as I put down his plate and sipped from my coffee, and looked upon his smile from his grey green face; if it was a matter of your mind controlling your illness, therefore your body, he would be fighting fit!

The End

The above story is a work of fiction, but Amber plays herself. What kicked off the story was the quote from some of the papers I have read about the school of thought that kicked off the notion ME was not a neurological disease, but a culture bound syndrome? These little nuggets are real tell-tale signs of how the man thinks. It’s a bit like reading about Cinderella not being able to go to the ball, because the stepmother has a plan.

A quote from Weesley:

"The epidemiology of environmental illness is reminiscent of the difficulties encountered in distinguishing between the epidemiology of myalgic encephalomyelitis (ME), a belief, and chronic fatigue syndrome, an operationally?defined syndrome...These patient populations recruited from the environmental subculture are a subgroup of patients who can be expected to show unusually strong beliefs about the nature of their symptoms, associated with a high percentage of psychiatric disorder...These total allergy syndromes are akin to culture?bound syndromes afflicting modern developed societies where sufferers from unexplained symptoms no longer see themselves as possessed by devils or spirits but instead by gases, toxins and viruses."LM Howard, S Wessely. Clinical and Experimental Allergy 1995:25:503?514"

Weesley should tell that to my sons Villi!! My son was diagnosed as having Somation disorder and was never checked for Ceoliac disease, because the medical profession still believe when they suspect CFS, it is somation and no testing should be done? The sad thing is Wessley is still believed even though the evidence has always been there that ME is a Chronic neurological illness, but there again Donald Trump is still sounding off; its funny old world.

Ceoliacs is an autoimmune disease that flattens the finger like tentacles that collect the vitamins from the small intestine and can go hand in hand with ME.  I have no idea how long he has suffered or if this could have been avoided if a more sympathetic approach had been followed.

My son was diagnosed with PoTS and because he was put on GET I wonder what effect this had on him. As far as I am aware no Paediatric looks for PoTS (Postural orthostatic Tachycardia Syndrome)

Most of all I think Weesley and all his followers should take full responsibility of taking Millions pounds out of research by producing a very bad trial called PACE and protecting it by calling people  who ask for the data as "vexatious". They should apologise for the appalling things they have said about  the people they were supposed to be supporting through their illness. How they have hounded and treated other Doctors and researchers.  As Maureen Hanson put it:
“Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin.”
Her resent research:
https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-016-0171-4

The Tymes Trust has given me invaluable information over the last year or so, Jane Colby has tirelessly worked and campaigned to protect children and their families like me. As I was just finishing this story Jane's Blog fell into my FB page, great minds think alike, especially when they stand up in stripysocks!

http://www.methenewplague.net/blog.html

They have a new leaflet to explaining Paediatric ME:

http://www.tymestrust.org/pdfs/mecfsseid.pdf

Researchers like Julia Newman are proving what we have known all along, but still get less notice in the headlines. Prof Julia shows and explains the effects of exercise on ME sufferers.

Standing up for Fatigue - Professor Julia Newton and Professor Jason Ellis

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

And now Julia has another paper, which proves that the heart and the blood volume are affected
http://openheart.bmj.com/content/3/1/e000381.short

A bit of word Tomfoolery on a Monday morning

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

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

The Living Hell of Beauty

Meet and greet great disaster

With every punch and blow

You stand still

Stand firm I say

Take it like a man my girl!

What the bloody hell is an upper cut?

Oh... there it is!

There is something deep

Within that makes me hold

Hold it in, and take the blow

Solar plexus

Perplexed

You’re from shoddy family

Connections far too low

To be strong of will?

Listen to him, listen close

He makes sense

Does he not?

Shadow boxing

Does not make you stronger you know

Weaker

Hold firm

The truth do will out

Eventually

In the end

Take a look from histories landscape

Torturous

Forsaken

Beleaguered

That soft foggy landscape

Where no beauty should aspire

But see the poppies

The lowly nodding poppies of beauty

Do you hear the voice of the nightingale?

It rises with the truth

And the hidden beauty

And yet, the weasel and the stoat

Gnaw and bite the beauty back

Hide the truth

Behind the veil of fog

That covers the beleaguered soldier’s agony

Their hypermobility flung out with PoTS

A belief system

Not a living hell?

Quiet contemplation will fix the landscape

March I say, march!

Accept you are mentally ill

Because I say so!

You are not living on a

Battlefield!

You are living in a dream world

My Girl!

Because I say so!

It does not smell that way to me Sir

The sun of truth

It does burns bright in my eyes Sir

I see the world as it is

Thank you

I see the poppies

On the gentle breeze of change

I hear the nightingale singing the truth 

In Berkeley Square

And beauty

It has always been there

And is set to rise!

Beleaguered soldiers young and old

Will walk hand in hand

Solid, strong  

And united!

They shall not be forgotten!

Nor will you Sir

Nor will you!

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

I wrote this post two years ago. As my son was going through Graded Exercise Therapy and Cognitive behavioural Therapy. Angus was deteriorating and was left bedbound. Having never being listened to I got quite cross with the medical profession, but that was no help to anyone. Two Years on we have learnt a lot, it is a shame NICE and the medical profession, NHS chose not to!

Yesterday I was taken by my family to the seaside; you cannot begin to imagine how this felt. I do not have the words to express the 101 emotions and joy. My twelve year old boy wanted me to hear the sea; I love the sound of the sea in summer. He wanted me to trust him. He wanted me to listen to him.

I took my own advice and I did listen to him, I did and do trust him. We ate fish and chips, we had ice-cream and we played on the amusements.

He took his own Heart Rate and Blood pressure readings, and I did not say a word. I have an amazing young man who is my hero, who is unique, my prize possession along with his sister who took me out for a Sunday jaunt to Felixstow.

How things could have been different/should have been different if they had only listened back then at the beginning. They seem to think that if the wheels move then don't look under the bonnet but: 

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?

Everything is just very slightly damaged in Myalgic Encephalomyelitis (ME)

In Dr Myhills Second Edition of Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis it's mitochondria, not hypochondria 2017 she has the same sort of analogy

Think of the body as a car:

Engine = mitochondria
Fuel = diet and gut function
Oxygen = lungs
Fuel and oxygen delivery = heat and circulation
Accelerator pedal = thyroid glan
Gear box = adrenal glands
Service and repair = sleep
Toolkit  = methylation cycle
Cleaning - oil = antioxidants
Catalytic converter = detoxification
A driver = the brain in a fit state

Every thing on this list has been effected by ME

Tilly Moments: Learning to Catch ME/CFS Before They Fall One of t...

Tilly Moments: Learning to Catch ME/CFS Before They Fall
One of t...: Learning to Catch ME/CFS Before They Fall One of the most important things I have learnt throughout Angus crash with ME, is learning ho...

A year on and Still learning to Catch ME/CFS Before They Fall No Data released from the PACE trial either

Learning to Catch ME/CFS Before They Fall

One of the most important things I have learnt throughout Angus crash with ME, is learning how to catch him before ME strikes yet another blow; it is difficult and very frustrating.

Knowing triggers is important, but it’s like trying to hit a moving target. The symptoms it causes are complex and immense, as it affects all the functional workings of the body: flight/fright/stand survival mechanism, immune system, brain, spinal fluid, respiratory function etc. in other words the whole of you, the way it reacts and how you behave and think. Nothing is left untouched, and can be misunderstood.

Listening to the body’s slight shift and changes is the key I suspect, but again it is very difficult and time consuming. Being prepared for the ever changing ways as you progress up or down the functionality scale is a little tricky, and I am beginning to wish I had a full troop of special ops, trained to kill and a couple of spies wouldn’t go a miss either. Fluffy socks – I’m only a mother.

The worst thing of all with this slowly squeezing the life out of you disease, is that as soon as the sufferer looks, and moves better, they and the people around them think they are ready to strive forward and recovery is on its way. In reality, hidden within their cells is a silent assassin.

After a good day or even a week or two in Angus’s case of being normal – comes the slow stealth of the assassin, killing the ability to produce energy, then the pain of every muscle shouting the assassin is coming, every movement a hidden struggle as the assassin moves through your immune system, opening the doors wide for any little bug to crawl in and cause havoc. A slight sore throat, a tender ear, they rest but it’s too late, the assassin has done its work. The scary part is that you never know what you are going to be left with, as each attach takes a little more away from you with a longer period of recovery (that part is very scary).

And what do most people see – someone who nearly got better, but gave up.

On the outside is my Hyper 9 Year old son, who thinks, and we believe is invincible, because he looks it. He is strong of will and determined – life will not hold him back!!! Is he frustrated you bet!!!!

On the inside everything is eroded and corroded by the silent assassin, wires of pain left bare.

Every assassin leaves a trail and a signature, Angus’s ME telltale clues of this disease:

v     Slight change in his apatite and taste, even his favourite treat taste funny

v     Sounds become irritating – unbearable ­– painful

v     Cold and painful muscles even when he is resting

v     Becomes confused – can’t answer basic questions

v     Temperature changes from high to low

v     Sore throat

v     Painful ears – congested – eardrum bursts

v     Because of the toxins in his body he starts to feel sick

v     Eyes feel uncomfortable – painful – light sensitive

v     Clothes and cloth feels harsher than they did

That is just the beginning; the signs can come gradually or are quick to set in. They never come in the same order and they can go quick or take days to subside. The scary thing is that some never leave.

Angus is soon going to be 10, he has learnt to live with chronic pain for the last two, nearly three years, with his ability to recover on a go slow. What you must ask yourselves HOW WOULD YOU COPE IF IT WAS YOU???

We don’t want sympathy - there are a lot of people out there coping with pain and have life shortening illnesses. What I do need you to understand is that if we push people into recovery with ME/CFS Fibromyalgia we can do great harm, prolonging their suffering and making it life long.

Evidence shows that if you take your time, stopping at a sustainable level for a long period before you increase your level of activity (you have no idea how frustrating it is), you can regain some or most of what you have lost.

The question is how do you do that with a hyper nearly ten year old? How do you catch them before they crash to the ground? bouncy castle? Safety net? Or Loving arms?

2017 and my son has been housebound for all this time. Because I found out what this illness needs by myself his symptoms are only brought on when he over does things, a price he often pays to enjoy some life.

Research has moved on but still we fight the powers who want to silence us, why do they want to do that? We can only but guess.

Perhaps soon we will have a test and then some progress for treatment the proof is in the blood:
https://www.healthrising.org/blog/2017/03/08/davis-strategic-approach-chronic-fatigue-syndrome/