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?

My ME Hero - Happy with a Nerf gun

When You Think It Is Safe To Pick Up The Washing

It Is Now!!

My solitude is broken by the yelp of a stubbed toe a ‘Bloody Hell’ and stomping of a rushed wakening. I sip the last of my coffee and take a deep breath and brace myself.

I wonder - as I hear his mobile go off, if I should just sit here and then I giggle at the ‘Shit’ that sharply punctures my solitude bubble, then expletives follow robustly as I hear the clank of the phone on porcelain. I take a deep breath and close my eyes and hope ‘please let it be on the outside and not inside the pan’. As there are no more blaspheming or stomping or shouts for mum, I think it is safe to come out of the office, my bright room at the top of our house. I look on the breezy yet warm scene out of the window at the waving corn and remember past summer holidays of days out, seaside, farms and zoo’s and wonder how this child of mine ever made it to be a man.

‘Mum’ He shouts as he runs downstairs and into the kitchen. ‘Got it’ he stomps back upstairs. ‘Mum, mum!’

‘I’m in the office’ He pokes his ruffled head through the door.

‘Anything you want us to take to nana and granddads?’

‘Nope, was that Rose on the phone?’

‘Yep, she’s on her way home. I’ll have breakfast and then we will get going.’

Front door opens and a whirlwind zips through the house, hairbrush, makeup and perfume are applied with expert hands and I remember the feel of the little hands that used to grab mine.

They both pounce on their little brother’s bed who squeals in delight and they make fun of his breaking voice.

‘You alright’ I can hear their regret and their guilt.

‘Yep, what time are you coming home?’ Angus asks. They look across at me.

‘They will be gone all day love and you need to keep your head back, you have already had two nose bleeds this morning.’

Nothing else is said and soon the door slams and I ring my mum and dad to say they are on their way. The excitement in my parent’s voice thrills and their sadness touches me. They ask how Angus is and we chat a little, and I miss them. I remember my little hand in my dad’s strong hand, how he used to squeeze mine to reassure me.

I go to take Angus’s heart rate and it hits the roof as he sits up. He squeezes my hand and I feel his warmth and support.

‘It’s alright mum, I don’t mind.’ He reassures me, as he lies back down before he passes out. ‘We have plenty to do. Fancy a shooting match with the nerf guns.’ I smile and nod as I pick up some washing from the floor. I hear the whistle of the soft pellet before I feel the sting and I laugh as I pick up the hidden self-loading toy gun and shoot around him with the fifteen shots.

I look at his big broad smile and I know we have to make the best of life we have. I just wish this is not all we have though and one day and one day soon, that smile would be able to shine once again in a free and easy time.

25,000 children in the UK with ME and their families have to face life like this. Any chronic illness needs support and not all disabilities are wheelchair users.

Fighting for Truth

Happy Birthday Sophia

We will Keep fighting for you and everyone with severe ME

Sophia’s life should be celebrated and honoured! Her mother should have had an apology and become a Dame, but still we fight on. What more evidence do doctors need that this disease does untold damage than from her autopsy and the evidence of the different forms or orthostatic intolerances ME patients have? Low oxygen gives you brain issue!!

Her life should have shown us how to treat people with ME and respect those who have CFS.  But we still fight over a name because we have to see the wood, the trees, the branches and the leaves and all that live around and on them. A name matters to research! A proper diagnosis matters to patients and treatment!

Her life should have given us clues where to search to find some answers, her death should have shown us the way!

 Our bodies give us clues to our state of mind? I am appalled that how doctors are allowed to treat their patients and refuse to find causes. If you disagree we are still draconian enough to throw them in asylums and tell them to behave better? They write books to show how disgusting our thoughts/beliefs are and people read them and quote them? Mental health should be about understanding that chemicals released by the body affecting the brain and therefore thought process. They should be supporting not ridiculing? Or is that just me who thinks lobotomise and ECT were the wrong treatments for misunderstood coeliac to Alzheimer’s and goodness knows what else in-between! Have we forgotten history, do we choose not to learn, do we not take note of research and think hold on we could be doing harm here?

It is how they behave medically that upsets me- over 200 hundred families and many more are threatened by all sorts of medical and educational staff that they will be taken to court, that their children will be taken from them! When you fight them to get truth, treatment and research, you get hung out to dry in public or gagged and bound by establishment. If I go missing after writing this come and find me x If I get hung out to dry don’t stand and point and laugh - try to understand the truth behind the myth.

A list of doctors I have read or heard derogatory remarks from the establishment or whose good solid research gets hidden from the public from the PACE trial advocates, whom should have been sorted out in 2011:

Dr Myhill, Dr Speight, Dr Bell, Dr Montoya, Dr Ron Davies, Dr Mark Van-Ness, Prof Light, Prof Newton, Mady Hornig, Prof Kerr, and so very many more.

Worst of all those who stand up for ME sufferers to say Graded Exercise Therapy (GET) is bad for ME sufferers are threatened too? These brave Doctors, researchers and professors stand up in no man’s land to be shot at while the brave lay in droves in their near death beds.

Her life should have given the NICE guidelines changes to treatment accordingly.

GMC should have supported the doctors and this family in particular! 

As long as they keep you thinking that we are mental, whatever that means! As long as they keep you thinking we do not suffer real pain, we can be dismissed. You, whoever you are, are keeping physically ill people in rooms to be tortured by one of the most hideous illness known to man! It takes decades to die.

Severe ME Alert Please Check For POTS ME makes me SadMad!!!

ME makes me SadMad!!!

I have tried but have failed to find many Doctors in the public eye, or even a Paediatric Doctors to take the heart of ME seriously!

They refuse to listen no matter how hard you try. A parent and patient can tell you a lot about the illness you are dealing with but most will just turn their backs and close their ears and eyes!

I do wonder how MAGENTA or SMILE made it through the ethics committee and any doctor that understands ME would suggest that Wii fit a good thing for children. Children love a challenge and only too happy to play until they collapse, everything you read about ME stresses that you have to be careful with their activities?

Any child would love and over exert on such devices and they are told screen time is a red activity? If we do not fully understand this illness, but know lack of oxygen is bad why are these types of research allowed to continue?

Far back as 1986 Dr Ramsay put the involvement of cardiac system as part of ME and yet my GP does not or won’t do a stand test? Yet a nurse in a hospital can?

Professor Julia Newton, has a good understanding of Orthostatic Intolerance (OI). For our children however it is up to the parent to find this information and is incredibly hard to get it taken seriously.

It was the comedian John Bishop that demonstrated what lack of oxygen does to you. When he went through the training for a space station activity they cut down his oxygen so that he could see how it was out in space if something went wrong with the helmet. In those few minutes I would see what was happening to my son. When he is recovering from doing anything other than his baseline activity he goes through this, he can hardly remember his name or process a simple question like: 'Would you like some water'.

The NICE guidelines thought about including OI in 2010, they nodded only slightly in their guidelines by suggesting that a heart monitor should be worn when undertaking any form of exercise, sadly though no one does. I suggest it should be worn for daily activities to better assess the damage being done to heart and brain. What is my reasoning behind this? This is my son’s printout of trying to do a normal activity when I thought he was OK. No real warnings are given to us about the adverse effects of normal activity. Why is this? A simple thing of a friend coming round :

For days afterwards his HR and BP will bounce around, until this gets answered we will never be able to live a comfortable or manageable life. For a 31 mins of activity, whether we build up to it or not has to be stopped if we introduce another cognitive activity and doing a dot-to-dot has the same effect on his HR as running around the garden?

Now new research is coming out from Navioux in collaboration with Ron Davies. They have found that the Mitochondria can sense every kind of danger from the pathogens to changes. they detect a a drop in voltage caused by the diversion of electrons (NADG / NADPH) to make viral components of respond to broad variety of toxins. In this cell danger response (CDR)  the mitochondria respond quickly decreasing their oxygen consumption this prevents pathogens from using the building blocks of the cell to replicate and puts other cells in alarmed state and gets their defences up. This process seems to put the sufferer in a limbo existence and for some just about breathing.

Court Johnson puts it much better than I do and is always worth reading:

http://www.healthrising.org/blog/2016/09/01/metabolomics-naviaux-chronic-fatigue-syndrome-core-problem/

Any how the lack of oxygen is all around the body and I wonder how or why this fact that you can prove gets missed by so many GPs, and hospital staff?

Now if he was on the MAGENTA trial or the SMILE trial even though the Dr involved with ME experience and reports that she is trying to answer the question on recovery in children and adolescents, none of the children under her care are tested for any form of OI ?  Even though HR and BP have been one of the leading signs of ME for decades?

So how safe are these children with ME under the NICE guidelines?

None of her children; who are asked to increase their activities are given a heart monitor or their Blood Pressure monitored during activity or parents told what to look for with the recovery period. Even though this can and should be used as a handy tool to safeguard the body and ensure recovery. The now professor spends her time looking for activities without a safe method of monitoring her very young children under her care when no harm should be done. There are watches that can easily do this and I am sure that if they were used, useful information and monitoring could achieve good results.

So are these trials safe and is it ethical?

Oxygen depletion through the body and particular the brain does what damage? High blood pressure low blood pressure through the day does what?

It is left to mothers like me, to self-educate, when we do we are accused of all sorts of things including Munchausen by proxy. Over 200 mothers with children with ME and many more with Ehlers Danlos Syndrome are put through this experience and the Scottish parliament what control over our children given to teachers and professionals?

Many teachers, social worker, health professionals use |Muchausen by Proxy as an excuse to punish families with children that do not get better or attend regular school. If they understood and had heart monitors this would not happen so frequently.

One mother has been made to take her very ill child to a psychiatrist 4 times to prove what? Because the consultant wanted to prove the whole family were mentally unstable. This is a professional that is the so called lead in the field of ME? What numbers are kept on such cases? Should this not be monitored?

A mother of a child diagnosed with Ehlers Danlos and needed tube feeding was sent to psychiatric hospital and held there because they understood little about the condition. How does that happen, and why do not Doctors stand up for us? We have to be careful Unexplained physical symptoms are not just misdiagnoses from professionals!

My son was put on CBT & GET as prescribed on the NICE guidelines except for the monitoring of the heart and I was told he did not have CFS as he would have recovered on this treatment?

This is 2016 and way back in 1986 and just before he died Dr Ramsey gave the following definition:

“A syndrome initiated by a virus infection, commonly in the form of a respiratory or gastrointestinal illness with significant headache, malaise and dizziness sometimes accompanied by lymphadenopathy or rash. Insidious or more dramatic onsets following neurological, cardiac or endocrine disability are also recognised. Characteristic features include:

1)      A multisystem disease, primarily neurological with variable involvement of liver cardiac and skeletal muscle, lymphoid and endocrine organs.

2)      Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.

3)      Musculo-skeletal dysfunction in a proportion of patients (related to sensory disturbance or to the late metabolic and auto immune effects of infection)

4)      A characteristically chronic relapsing course.”

Research is and was proving his theories. So why was illness beliefs pushed as the cause?

So is it only me, that after the SMILE trial and no data published and after all the worry written to the Ethics committee does someone not ask for the data to be released. Why did not the people conducting the trial ask and respect the parents experiences on the SMILE trial and report it in their write up!

Why does no one look for the tell tail signs of connective tissue problems? This is the top of my son's leg and Dr Speight pointed this out as something to be looked into nearly a year ago! I'm still struggling to get a Doctor to look at this? Dr Speight is now reported to not uphold the holistic view of ME and is not allowed to talk about ME for the next 6 months? A doctor who cares about evidence punished?

These pink and sometimes purple lines show the skin is stretched, now this is on the outside of the body for all to see. What is going on on the inside? The connective part of his joints where he gets most of his pain. We are made up of connective tissue after all!

How many of our children are made severe because they are diagnosed early with ME, but also have POTS and given CBT & GET? Why do we hide the numbers or not record them? Especially when the PACE Trial is full of controversy? the researchers of the PACE trial would like us all to believe that Unexplained Medical Symptoms should be diagnosed when the medical profession are not sure what is going on. Each doctor goes on what he has been taught and at the moment they are encouraged not to test for things that have no complete answer or are complex, this can not be allowed to continue because so many people are left diagnosed with conditions that have treatment and how can we make strides forward if we do not strive to find a physical answer to medical problems?