A Normal Converstion

A Normal Conversation Between Heroes.

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

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

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

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

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

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

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

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

Naomi replied:

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

Caryn replied:

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

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

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

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

And her having fun

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

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

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

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

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

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

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

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

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

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

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

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

Do not forget ME

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

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

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

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

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

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

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

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

Kind Regards

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

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

Humm so are they 

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

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

We Will Never Give Up Or Give In

We Will Never Give Up

Or Give In

‘She who will not be named for fear of bursting a blood vessel, has only gone and copied in the GP, paediatrician, CAMHS, school and a load of other people who will be breathing down my neck for explanations! School have already rang to see when can they expect Sian back in school. The sheer stupidity of it, it states and I quote that “Sian can manage 3-4 hours high energy activity per day without increasing her fatigue!” How the bloody hell does she know that? I told her fifteen minutes four times a day is all she can manage, add that up by my reckoning it’s an hour. Brushing her teeth on a bad day can zonk her out! You go to these professionals and you wonder if they have any ears, because they sure don’t listening to what we say, and they must have grey fuzzy bits instead of working brain cells! Dr Ramsay in 1986 listed the criteria for diagnosis of ME and now the researchers are getting the technology to prove it all, and still the psychobabble twaddle lot, gets heard above reality.’

Carman had opened the chilled bottle of Prosecco, the neck of which she tightly squeezed and twisted cork harshly, as she handed the letter over for inspection while she grabbed the flutes.

‘Four years ago they proved that the heart rate and blood pressure was down to ME and not deconditioning, the harms that bloody PACE trial did, is still doing.’ Becky said as she scanned through the letter, and her shoulders sagged as small whimpers of condemnation escaped. With each little escaped concern, Carman’s shoulders lifted, her back straitened and her normal resolve restored.

Becky went to speak a couple of times, but had to rethink and squirmed in her chair as though this would shed some light on the perplexity her mind was in. Intently Carmen looked at her friend; they gulped on the wine in syncretisation, quenching their joint indignation.  Carmen trying to calm down, intently looking at her friends facial reactions; Becky would never make a poker player Carmen thought, as she refilled their glasses.

‘What meeting is this devil woman talking about?’

‘The one we went to last week!’ relief flooded through and warmed Carmen’s aching limbs that were tightly coiled round her dismay.

‘See Becky, there is no explanation of what high energy activity is? So those muggles will now think Sian can go to school - hence the phone call. Sian can’t even cope with full daylight now.’

This was like a punch to Becky, she had not realised things had got this bad, hopefully she thought it was just going to the hospital and the journey that had brought this on, and she would recover given time.

‘They assured you that high energy is sitting up for Sian at the minute, and not to worry.’

‘I know, but reading down they also go on about shopping as being a good social integration and will support her back into school? The hurtful thing is it’s her favourite thing in the whole wide world to do, you know how she is with designer clothes, she collects them like stamps, it’s like putting needles under her finger nails and telling her to cope, as her nails pop off one by one.’ Exasperation dropped from both their shoulders.

‘But we explained all that. Oh honey your wizards don’t use their wands’ Becky’s flabbergasted reply needed quenching, she took an angry gulp of wine. At this rate they will both be seeing double shortly, thought Becky, as she tried to focus her mind on the letter in her hand. But reading down the words and their implied meaning, just did not make sense. She could forgive someone who had never been involved with Myalgic Encephalomyelitis, god knows ME is a multitude of complexities, but for a so called professional, this letter is disturbing as it is disgusting, she obviously did not understand severe ME.

‘We don’t have wizards, we have muggles, the worst kind of muggles the ones that think they are wizards! When will your wizard be back in action?’

‘The General Medical Council are taking their time, they need to think carefully they say.’

‘What are the Dark Lords trying to hide this time?’

‘Who knows! It’s like a fairy-tale nightmare; muggles find it hard to believe. Unless you have lived in the world of so called medically unexplained illness, only it’s not medically unexplained is it. Four years ago they dispelled that myth of deconditioning. Medically unexplained my deodar, not looked for because you are labelled “the undeserving sick!”’ Becky blew-out through her relaxed lips that expelled soft pillows of air, as she threw the letter down.’

‘That theory was promoted by the dark Lords of psychobabble so a political battering ram could be used by Department Work and Pensions, now the cuts can go through?’

‘It’s just so wrong, remember the hours our girls spent looking at stuff on line to occupy them while they were both so poorly. It was their only joy. Their need to shop at all cost was the one thing that convinced me the psychological element to ME had very little to do with them. Physically unable to live gave them emotional consequences of being SadMad, that dragged them down on the odd occasion, but that was as far as it went. Rather remarkable considering what they were missing out on. The support they gave each other was amazing. That reminds me Beth is coming home next week from Uni and wanted to know if she could come and see Sian?’ Becky could see the pain through the warm smile and regretted her lack of tact. Maybe half an hour or so?’ Gently suggested Becky, ‘She could dry shampoo Sian’s hair make her feel….’

They both took a large gulp of wine, her and her big mouth thought Becky.

In the early days of Fiona’s illness she could remember feeling jealous of Carmen and Sian. The odd time they would go out to a shop, had felt at that time like a knife was being inserted and twisted inside her. Now the reverse was true and how do you cope with that? What the hell can you say to make things a little easier?

‘Have you managed to get out lately? Bite your tong off you over large buffoon in a tutu, Becky shouted at herself.’ I should know better than that, sorry.’ She thought as she sipped, how the hell can Carman go out while Sian blacks out and has nose bleeds all over the place? You prize pilchard, if someone had said that to you, you would have flattened them with a lashing of your tongue.

The tears close to Carmen’s lips were drowned by prosecco; the lightness of its flavour, easing away her need to escape.

‘What I would not give to be spending a fortune on clothes right now, just looking on the internet with Sian would be a joy. They quote socialising twice, did you notice?’ she pointed to the letter ‘and as one of her main targets. For the love of fluffy ducks! Out with friends coping with the lolling around talking frenzy of teenage girls, is just unthinkable the consequences of all these things would put her back weeks, let alone trying to do 4 hours a day!’ Carmen realised what she was saying and looked across apologetically at Becky, who she could see was pained by her earlier suggestion ‘That does not include Fiona, Fiona understands and will...’ Carmen turned round to unnecessarily tidy the work tops. ‘Bless ya, I know you are both desperate to help. But sitting up for Sian is high energy these days, her blood pressure and heart rate goes on a roller coaster ride all of its own. Having to go down stairs is like a Tibetan mountain hike, with all the organising that goes with it, pity there is no shirker, I could do with a shirker.’ Forlorn she put down the bubble filled flue, with a cherry bobbing around the cool fizz and both women giggled into the sadness, their memories floating on the bursting bubbles of time.

Becky did not need telling how body destroying this illness was, and the impact on someone who was suffering like Sian; her daughter had been hit hard by glandular fever for a couple of years, but the two girls treatments had been pols apparat and none of it made sense.

Unlike Fiona, Sian had heroically carried on, while her daughter was flattened by the virus from the very start. When Fiona had pads over her eyes as the daylight felt as if it was burning through to her brain, Carman had stood firm and more or less carried Becky through the bleak times, with her humour, wit and determination.

There was a year where the girls were at the same level of illness and although couple of years apart in age, they supported each other through Skype and the media of the youth. In those days they were mostly bedbound and yet Fiona picked up and started to recover slowly, with dips and troughs, but a steady rise in ability and yet Sian, who had been stronger at the beginning, just kept the same, no increase in stamina. It was like watching your friends family have a slow car crash that you could not stop or avoid, whatever you did.

Unlike Sian’s, Fiona’s GP and paediatric never pushed and explained how long it could take to recover. They had a system in place that wrote letters and talked with the school, organising Occupational Therapists, getting a disability badge which was a god send to enable Fiona to go out. Becky had none of the letter writing that Carman has the five folders full of reports and letters stood to attention near the phone. All the time Sian just kept slowly detreating, it was shocking. She had no tests and Becky could never understand the rational of her medical team. When they had gone to the hospital last week, it had seemed as though some understanding was reached over the seriousness of Sian’s condition, but this letter was a worry.

The conflict of emotions she felt over seeing her dearest friend’s daughter fight against this hideous illness, the same illness that her daughter had gone into remission from. Fiona had struggled through school, but they were always gentle and kind with her, made to understand by the wand of the greatest wizard. Now she was at Uni; admittedly not able to partake in a full Uni life, but had some life, was deeply painful for her. She felt as though her heart was being wrenched out, and the guilt was over whelming.

‘Oh I almost forgot; your YouTube video has gone viral!’

‘What YouTube video Becky?’

Cautiously and with apprehension, she screwed up face as though a blow would be administered at any moment, Becky explained.

‘The one we made last week, when we did the ME challenge. You know how many times you can say Myalgic Encephalomyelitis while sucking helium and being paint bombed’

‘But I couldn’t say it, and we gave up’ Carman stunned expression was a joy.

‘I know.’ Becky broke out in a girlish grin, widening her eyes and raising her shoulders in excitement! ‘That’s what made the clip so funny; they seemed to like middle-aged women pratting about- look we’ve had…’

Carmen had snatched the phone and started to play the clip, at first she winced. Seeing herself in a Victorian bathing costume with a duck inflatable was a little distressing, she really must go on a diet. The shower cap with its sparkle was over the top. She most definitely looked like a pantomime dame. When it came to the part when she was trying to suck helium, being shown by Becky, who was also dressed in the same attire, they started to giggle together heads resting on one another. Her trying to focus on saying the difficult words with a tongue that was semi paralysed by prosecco was hilarious, she had to admit. Sian was maliciously setting off the paint bombs trying to get them in the faces, from her wheelchair. Carmen did not know whether to be annoyed at her stupidity or proud that she was brave to keep going, what harm could a little fund do? The smile Sian had on her face was worth the payback, and when she is able to watch it will give her endless fun.

Her embarrassment was nothing really, no one would know who she is, and those that did would enjoy the spectacle. It would be worth it to get some understanding of this illness out there, even in a small way.

When she looked at the mega amount of hits, it blew her mind, and when she looked at the “Just giving Page” it was heart-warming. People can be so kind.

‘Like you said at the end Carmen’ Becky put her arms around her friend, who she was so indebted to and admired from every angle. ‘We never give up, we will beat this!’

For the first time in five years, Carmen really did believe it!

If you can just give a £1 to my just giving page so that people with ME get the research needed to stop this illness from robbing 25,000 children of any fun in their lives. 

Thank you

https://www.justgiving.com/fundraising/Tilly-Moments?newPage=True

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?

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