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

The PACE Trial Data The Grief Of A Mother Lion

The PACE Trial Data  

The Grief Of A Mother Lion

Mothers are often portrayed as innate beings with a hysterical nature. We are used as battering rams that lead to all the ills of society! We are thrown into the constraints of a straitjacket, of our moral obligations and societies beliefs!

To-day you get the raw of the mother, the lioness that protects her cub and I stand alone and say how dare you!!!

How dare you! Tell me that my son has somatic disorder, medically unexplained symptoms, or an “illness belief” of controlling behaviour as put forward by the PACE trial!

How dare you! Those of you who have wilfully build that moral high ground that made a kingdom of Cognitive behavioural Therapy (CBT). CBT pushed away a complex illness like ME, a placebo effect? This was all helped by my wealthy country that does not want to take taxes of corporate buddies, but wants to take away much needed help from disabled people, how dare you!!!!!

How dare you! Medical people stand by and let this happen, when sticking together could have protect me and my child and 25,000 others like us.

You are willing to let me stand alone and be ridiculed, demoralised and abused!!!

Know your diagnosis, the research that surrounds it, and your patient. Do no harm!!! 

How dare you! Journalists, make up a sensational story and build up an empire of harm, not reporting or finding the facts! The media giants that want a certain mythical society to portray, so that the Government of the day can moralise their agenda!

I have listened to all the evidence on both sides. I have read court cases, I have witnessed from charities a willingness to tell untruths and report and dismiss those they say they support.

AYME (Association of Young ME has now ceased to exist and is now part of Action for ME who still have Mary-Jane willows as head of their children services, so no change 23/03/2017) how dare you say you will not support Dr Speight!! How dare you tell your parents in turmoil, that you will not ask for the results of the PACE trial on their behalf! So some of that data has now been released and I can see for myself the damage other parents before me have spoken about. You are there to stand with us, not push us down!

How dare you! Now professor Crawly say it was the mothers that influenced their children not to take part fully in the SMILE trial! You of all people with your 300 children a year, would have witnessed the damage of keep going would have done to the children under your care. Jane Colby of the Tymes Trust, has shown and supported the parents left alone and abandoned, and is the only one who has given us parents the truth!

Professor Crawley you have let The Lightning Process publish that they have been collaborating in one of your trials, and do not openly publish the results! Now giving false credence to the Lightning Process, as desperate parents pay for treatments.

You say on radio 4 that people have issued death threats, and then quietly retracted the accusation as a misinterpretation? All over the media these accusations linger, keeping already threatened parents quiet!

You have condemned us mothers to years of seeing our children wilt and wither, while you influence the nation to accept the straitjacket of motherhood. In all your trials it is the mothers and their social background that you want to investigate, to find a link. You dismiss the evidence all around the world that show lactic acid in muscle and cell! Inability of the ME body to produce energy.

I hear on a daily basis the pain and the suffering of mothers left abandoned, confused by the treatments, and lack of tests that could help alleviate some of the symptoms!

You dismiss the evidence that shows the truth! You influenced the NICE guidelines. Professor Baker of the NICE guidelines said “The Guideline failed to address the real issues in ME/CFS”!

How many accusations have you made about mothers? How many children with ME have you demanded they are mental ill, sending children to different mental authorities? How many good doctors have you destroyed or deterred from supporting children and their parents?

How dare you deny that ME can get severe after a small amount of daily living. Emily Collingridge, Naomi Whittington both of which Mary-Jane Willows are aware of!

I understand you do not believe in ME, I get that you think CBT and GET are the treatments you choose. I understand you do not agree with the 9000 papers that show the dysregulation of the body, which never get the funding that you do. These papers however, clearly point to why so many symptoms like anxiety and eating problems exist within ME!

I get why you do not want to do biomedical research, but to deny severe ME and do harm is quite another thing! You are still insisting on a PACE trial for children called MAGENTA. To offload a physical condition onto mental health issue is just wrong!!! Not least because the treatment HARMS the body, that is showing signs of shutting down!! You are all aware of this fact!

Professor Crawley is now being funded by Action for ME to look into severe ME, even though she does not deal with the most severe children and hardly ever diagnosis ME herself, and has stated:

“determine if other diagnoses have been considered (eg. anxiety, depression, eating disorders).”

All of which are part of the ME symptomalogy. There is no mention of any physical associations of ME in any of the Professor research reporting? So it is clear for all to see how she treats ME and the parents! All researchers are calling for the International Consensus Criteria (ICC) to be used so that other illness are ruled out in the first instance. The paediatric side of which was written with help of Dr Nigel Speight!!!!!

A collaboration between most of the charities and the NHS are being used to hide your determination to keep children from biomedical research, and doctors to believe how serious ME is. With none of the true criteria of ME listed do you look for or know how to treat; that is to say any form of Orthostatic intolerance such as PoTS and post exertional malaise. 

We stand alone us mothers, abused and condemned worthy of an “Archers manuscript”. We stand and roar against schools that want attendance at any cost, because of the influence of the PACE Trial and its supporters! We stand alone against medical advisers, and those that stand with us in the public eye are silenced by the GMC!

My innate sense is to ROAR and PROTECT. This Roar is not to be dismissed or ridiculed; the history of abuse is littered with mothers like me, hidden by the money, ways and beliefs of personal gain of those that plays on the system.

This festering illness, left for decades shows up in our children’s blood, brain, heart, joints and stomachs no part of our children are left untouched, no part of our children are left pain free! At the start of term the torture and torment is at a fever pitch, with long term harm done!!! But no one looks or tries to find the numbers of those that are harmed or long term ill because of this inappropriate treatment.

We teach our doctors about medically unexplained illnesses, what we forget are the facts! We know more about snails than that of humans. You cannot find that which you do not look for!!!

We have very little biomedical research in children because people won’t listen to us! Dismissed as we are by the ridiculous notion that this is an “illness belief” that made up theory is so full of poppycock and nonsense; you wonder who would be silly enough to believe it!!

Just because you do not listen to the 9000 research papers, does not mean when I do I am some sort of neurotic! I can read the evidence for myself and make an informed choice on probability; as no test can be given:

DR Mady Hornig 27^th Febuary  2015 found changes

https://www.mailman.columbia.edu/public-health-now/news/scientists-discover-robust-evidence-chronic-fatigue-syndrome-biological

Professor Maureen Hanson June 2016 found that our gut carries inflammation in the gut, and stated “Furthermore, our detection of biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin.”

 http://www.news.cornell.edu/stories/2016/06/indicator-chronic-fatigue-syndrome-found-gut-bacteria

Naviaux found Metabolic 28^th August 2016

"Despite the heterogeneity of CFS, the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients and interestingly, it's chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death. In CFS, this slow-down comes at the cost of long-term pain and disability."

http://www.pnas.org/content/early/2016/08/24/1607571113.abstract

Also on the 28^th August 2016 Sonya Marshall-Gradisnik and her team show the dysregulation of protein kinase gene expression in NK cells

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5003121/

The History of ME is there for all to see, it shows at every turn how physical and painful ME is, so why do we want to believe that the pain can be handled by the sufferers mind only, and not want to find out the true cause?

As a mother I roar and I am telling you, I have witnessed my son’s torture and I have borne the humiliation of so called intelligence from the medical profession. I am embarrassed by that professions behaviour!

My son at the age of 8 to the age of 10 was prescribed GET & CBT, I was coerced into enforcing it. CBT leads to mistrust within the mother child relationship because the PACE manual says to dismiss the illness beliefs, it gave an impression of the body capable! He is now so ill he is mostly bed or house bound! PoTS coeliac undetected because of the CBT told me to dismiss his pain!!!! Now I have to learn to live with this!

How would you feel if you held your child sobbing because his mind wants to play, run, climb, ride a bike, rush his meal down and leave his house and wave good bye to me, to be free? But if he stands up his HR reaches 150 +

Would you ROAR like a lioness, will you roar with me to make a change?

Invest in ME, 25% ME Trust, and Tymes Trust are the only charities I now put my faith in. Support them, sign against the MAGENTA trial! Support doctors in demanding 20 mins consultant time, demand that unexplained medical symptoms need to be investigated and education in ME should be done!   

24th September 2016 This popped up in my Twitter feed a shameful read of the mindset of the people in charge of very poorly children. AYME (now part of Action for ME) a charity that tells us it is there to help and support children allow this to go on! Fully aware and complicit!

http://blogs.plos.org/mindthebrain/2016/09/23/before-you-enroll-your-child-in-the-magenta-chronic-fatigue-syndrome-study-issues-to-be-considered/

Then this entered and well what can you say:

http://niceguidelines.blogspot.co.uk/2016/09/pace-trials-principal-investigator.html

To help support research the link below will help, it is also funding a Centre of Excellence for ME Thank you  

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The PACE Trial Data The Grief Of A Mother Lion

The PACE Trial Data  

The Grief Of A Mother Lion

Mothers are often portrayed as innate beings with a hysterical nature. We are used as battering rams that lead to all the ills of society! We are thrown into the constraints of a straitjacket, of our moral obligations and societies beliefs!

To-day you get the raw of the mother, the lioness that protects her cub and I stand alone and say how dare you!!!

How dare you! Tell me that my son has somatic disorder, medically unexplained symptoms, or an “illness belief” of controlling behaviour as put forward by the PACE trial!

How dare you! Those of you who have wilfully build that moral high ground that made a kingdom of Cognitive behavioural Therapy (CBT). CBT pushed away a complex illness like ME, a placebo effect? This was all helped by my wealthy country that does not want to take taxes of corporate buddies, but wants to take away much needed help from disabled people, how dare you!!!!!

How dare you! Medical people stand by and let this happen, when sticking together could have protect me and my child and 25,000 others. You are willing to let me stand alone and be ridiculed, demoralised and abused!!! Know your diagnosis, the research that surrounds it and your patient. Do no harm!!!

How dare you! Journalist, make up a sensational story and build up an empire of harm, not reporting or finding the facts! The media giants that want a certain mythical society to portray, so that the Government of the day can moralise their agenda!

I have listened to all the evidence on both sides. I have read court cases, I have witnessed from charities a willingness to tell untruths and report and dismiss those they say they support.

AYME (Association of Young ME) how dare you say you will not support Dr Speight!! How dare you tell your parents in turmoil, that you will not ask for the results of the PACE trial on their behalf! So some of that data has now been released and I can see for myself the damage other parents before me have spoken about. You are there to stand with us, not push us down!

How dare you! Now professor Crawley say it was the mothers that influenced their children not to take part fully in the SMILE trial! You of all people with your 300 children a year, would have witnessed the damage of keep going would have done to the children under your care. Jane Colby of the Tymes Trust, has shown and supported the parents left alone and abandoned, and is the only one who has given us parents the truth!

Professor Crawley you have let The Lightning Process publish that they have been collaborating in one of your trials, and do not openly publish the results! Now giving false credence to the Lightning Process, as desperate parents pay for treatments.

You say on radio 4 that people have issued death threats, and then quietly retracted the accusation as a misinterpretation? All over the media these accusations linger, keeping already threatened parents quiet!

You have condemned us mothers to years of seeing our children wilt and wither, while you influence the nation to accept the straitjacket of motherhood. In all your trials it is the mothers and their social background that you want to investigate, to find a link.

I hear on a daily basis the pain and the suffering of mothers left abandoned, confused by the treatments, and lack of tests that could help alleviate some of the symptoms!

You dismiss the evidence that shows the truth! You influenced the NICE guidelines. Professor Baker of the NICE guidelines said “The Guideline failed to address the real issues in ME/CFS”!

How many accusations have you made about mothers? How many children with ME have you demanded they are mental ill, sending children to different mental authorities?

How dare you deny that ME can get severe after a small amount of daily living. Emily Collingridge, Naomi Whittington both of which AYME are aware of!

I understand you do not believe in ME, I get that you think CBT and GET are the treatments you choose. I understand you do not agree with the 9000 papers that show the dysregulation of the body, which never get the funding that you do. These papers however, clearly point to why so many symptoms like anxiety and eating problems exist within ME!

I get that AYME do not want to do biomedical research, but to deny severe ME and do harm is quite another thing! You are still insisting on a PACE trial for children called MAGENTA. To offload a physical condition onto mental health issue is just wrong!!! Not least because the treatment HARMS the body, that is showing signs of shutting down!! You are all aware of this fact!

Professor Crawley is now being funded by Action for ME to look into severe ME, even though she does not deal with the most severe children and hardly ever diagnosis ME herself, and has stated:

“determine if other diagnoses have been considered (eg. anxiety, depression, eating disorders).”

All of which are part of the ME symptomalogy. There is no mention of any physical associations of ME in any of the Professor research reporting? So it is clear for all to see how she treats ME and the parents! All researchers are calling for the International Consensus Criteria (ICC) to be used so that other illness are ruled out in the first instance. The paediatric side of which was written with help of Dr Nigel Speight!!!!!

A collaboration between most of the charities and the NHS are being used to hide AYME determination to keep children from biomedical research, and doctors to believe how serious ME is. Their GP fact sheet; that parents were appalled at, with none of the true criteria of ME listed that is to say any form of Orthostatic intolerance such as PoTS and post exertional malaise. Their insistence on using ME/CFS when they are a ME charity is confusing and undermining.

We stand alone us mothers, abused and condemned worthy of an “Archers manuscript”. We stand and roar against schools that want attendance at any cost, because of the influence of the PACE Trial and its supporters! We stand alone against medical advisers, and those that stand with us in the public eye are silenced by the GMC!

My innate sense is to ROAR and PROTECT. This Roar is not to be dismissed or ridiculed; the history of abuse is littered with mothers like me, hidden by the money, ways and beliefs of personal gain of those that plays the system.

This festering illness, left for decades shows up in our children’s blood, brain, heart, joints and stomachs no part of our children are left untouched, no part of our children are left pain free! At the start of term the torture and torment is at a fever pitch, with long term harm done!!! But no one looks or tries to find the numbers of those that are harmed or long term ill because of this inappropriate treatment.

We teach our doctors about medically unexplained illnesses, what we forget are the facts! We know more about snails than that of humans. You cannot find that which you do not look for!!!

We have very little biomedical research in children because people won’t listen to us! Dismissed as we are by the ridiculous notion that this is an “illness belief” that made up theory is so full of poppycock and nonsense; you wonder who would be silly enough to believe it!!

Just because you do not listen to the 9000 research papers, does not mean when I do I am some sort of neurotic! I can read the evidence for myself and make an informed choice on probability; as no test can be given:

DR Mady Hornig 27^th Febuary  2015 found changes

https://www.mailman.columbia.edu/public-health-now/news/scientists-discover-robust-evidence-chronic-fatigue-syndrome-biological

Professor Maureen Hanson June 2016 found that our gut carries inflammation in the gut, and stated “Furthermore, our detection of biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin.”

 http://www.news.cornell.edu/stories/2016/06/indicator-chronic-fatigue-syndrome-found-gut-bacteria

Naviaux found Metabolic 28^th August 2016

"Despite the heterogeneity of CFS, the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients and interestingly, it's chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death. In CFS, this slow-down comes at the cost of long-term pain and disability."

http://www.pnas.org/content/early/2016/08/24/1607571113.abstract

Also on the 28^th August 2016 Sonya Marshall-Gradisnik and her team show the dysregulation of protein kinase gene expression in NK cells

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5003121/

The History of ME is there for all to see, it shows at every turn how physical and painful ME is, so why do we want to believe that the pain can be handled by the sufferers mind only, and not want to find out the true cause?

As a mother I roar but do not always understand but I am telling you, I have witnessed my son’s torture and I have borne the humiliation of so called intelligence from the medical profession. My son at the age of 8 to the age of 10 was prescribed GET & CBT, I was coerced into enforcing it. CBT leads to mistrust within the mother child relationship because the PACE manual says to dismiss the illness beliefs, it gave an impression of the body capable! He is now so ill he is mostly bed or house bound! PoTS coeliac undetected because of the CBT told me to dismiss his pain!!!! Now I have to learn to live with this!

How would you feel if you held your child sobbing because his mind wants to play, run, climb, ride a bike, rush his meal down and leave his house and wave good bye to me, to be free? But if he stands up his HR reaches 150 +

Would you ROAR like a lioness, will you roar with me to make a change?

Invest in ME and Tymes Trust are the only charities I now put my faith in. Support them, sign against the MAGENTA trial! Support doctors in demanding 20 mins consultant time, demand that unexplained medical symptoms need to be investigated and education in ME should be done! x  

24th September 2016 This popped up in my Twitter feed a shameful read of the mindset of the people in charge of very poorly children. AYME a charity that tells us it is there to help and support children allow this to go on! Fully aware and complicit!

http://blogs.plos.org/mindthebrain/2016/09/23/before-you-enroll-your-child-in-the-magenta-chronic-fatigue-syndrome-study-issues-to-be-considered/

Then this entered and well what can you say:

http://niceguidelines.blogspot.co.uk/2016/09/pace-trials-principal-investigator.html

To help support research the link below will help, it is also funding a Centre of Excellence for ME Thank you  
https://www.justgiving.com/fundraising/Tilly-Moments

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

It's Not A Big Dream To Many 

but it's Huge To Us.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, 8 May 2015

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

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

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

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

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

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

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

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

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

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

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

My question is what would you do?

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