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!!!
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 27th 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.”
Naviaux found Metabolic 28th 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."
Also
on the 28th August 2016 Sonya Marshall-Gradisnik and her team show
the dysregulation of protein kinase gene expression in NK cells
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!
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/
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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