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

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?

Who stole my hero?

Who silenced him

To hide the truth?

Who is going to help my boy now?

He's only got me,  

his mother

And trust me she’s of no use

I've asked a few questions

But the answers made no sense.

Ya see I'm a woman

And apparently that makes me

Hysterical

 with no common sense.

I try to be brave 

A tough cookie

But who is going 

To listen to

A woman 

A mother

Would you?

Over 200 families have been ridiculed for believing their children suffer from ME. Over 25,000 children put at risk from professionals, who should know better. All because one group of psychiatrists fiddle the numbers on a trial and decided doctors should do not test to look for physical signs. This they say is in the patients own interests?

Children who later, it has been found to have profound problems with how their body distributes their blood, and therefore their oxygen levels when they stand up.

ME and PoTS go hand in hand.

One of the only Dr's who truly understands Myalgic Encephalitis, has been silenced by those that feel mind over body is the way forward for a problem like ME with PoTS? They do not recognise that when most, if not all ME patients stand up their heart races, starving bodies of oxygen doing untold damage! 

In general GP's don't look for physical signs when a diagnosis of CFS/ME is made, because they have been taught not to. We, you and me, let this happen because we choose to stay in the wilderness. That one Dr; world renowned for helping families like mine and my friends, has been told he cannot speak about ME or to help those suffering untold damage. How many more children will suffer now?? 

Forget us not, those of us in the wilderness, covered by the thorns of misunderstanding 

Of All The Silly Things

Of All The Silly Things

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The End

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

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

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

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

This was taken from the EDHS website:

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

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

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

Taken from the Voices from the shadows:

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

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

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

Lactic Acid and the brain

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

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

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

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

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

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

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