What do I mean by ME is like a pair of Polka-Dot-PANTS I
hear you cry?
And why: Passive Aggressive Non-Trusted Science?
Well as an illness Myalgic Encephalomyelitis (ME) has been hung out to dry and
ridiculed due to its many spots and the fact it never does what you would
expect an illness to do. The biggest trial on ME in the UK was the PACE trial
and it was the biggest load of PANTS, science has ever produced!
So by flying your Pola-Dot-PANT you are giving
recognition to many hidden truths about this unseen illness.
We don’t normally wash our dirty PANTS in the open,
but we have been forced to do just that, and now we stand proud against the
ridicule we have endured for decades.
How as a society, have we been taught to hate those
that either don’t die or don’t get fully functional?
It seems we have decided, you can live with
adversity but you must be a hero of some kind, you must never be average or
different if you are disabled in the UK. If we can’t see your disability you
don’t have one! These threads of our society have been carefully woven into our
unconscious mind as a “stiff upper lip”. But that “stiff upper lip” has been
woven to discriminate and like all discrimination, it is butt ugly.
In 2011 a group of master weavers showed their Emperors of Parliament
the cloth they had woven, it was called the PACE trial. It put forward a
treatment called Cognitive Behavioural Therapy (CBT) - a mind over body
approach, that stiff upper lip at all cost. With Graded Exercise Therapy (GET) which
was used to get the patient back to work. They promoted that these patients
were just deconditioned and not physically ill. This idea has been scientifically
disproven. The very physically ill ME suffers, get no treatment, no support and
not empathy. The trial is now considered the worst trial by the world research
community.
Yet at every twist and turn, even to those that have been bedbound for
decades through this treatment, they quote the PACE trial figures at them, as gold
standard research.
This trial was important to the government, DWP, and the insurance
industries, all of which the researchers were and still are involved with. It enabled
them to link ME to a mental illness. DWP and insurance industries don’t have to
pay out if they could force ME patients into the Mental Health box? Whatever
the world Health Organisation lists ME as, and which they should abide by, they
do their own thing? This has taken a large amount of funding from those that
need mental health support.
They played on our lack of understanding over the mind, and told
everyone how devilish it could be to your body with no real evidence, just a
preconceived idea. Mass hysteria was thrown in as the cause of ME. You only
have to look at the Camelford water incident to see how it pans out. Or the
contaminated blood scandal; to see the tricks our Government and National
Health Service are willing to play with our health. Our journalists, were only too
happy to oblige with the ridicule as that sells papers? The comic element brought
in by YUPPIE FLU and the changed name from Myalgic Encephalomyelitis to Chronic Fatigue Syndrome,
was an easy play on symptoms that could be turned on the patients
behaviour. This abuse has carried on through the decades, after all who listens
to the mentally ill?
As a country we love anything that we are in charge of, feel empowered by,
have an element of self-help and more importantly – can be pinned on the individual’s
responsibility, so that society can wash their hands of them? With this in mind,
it was easy to fool the medical profession as a whole, if not the entirety. These
patients, they assured all, just need to move to get better, even though it was
contrary to the evidence. None listened to the patients, through conferences
and meetings doctors and healthcare professionals were told these poor souls
are just non-compliant to treatment. Being bedbound was just deconditioning;
they did not need tests, as you can just tell their “type”?
The confusion over pain even for cancer patients is becoming so widespread;
people are now needlessly dying with no treatment. The adoption of biosocial
model; with Medically Unexplained Symptoms, Bodily Dysfunction Disorder, are
masking all known diseases like cancer, diabetes, Lymes, Lupus, Thyroid and ME
to name just a few.
I had two uncles that had rarely visited the Doctors who have suffered
by this and have died after being refused treatment or tests. Both told that
they were imagining the severity of the pain. Both found the cause too late,
both could have been saved. We hear this all the time with cancer; those
numbers are collated, but there are other illnesses and diseases that suffer this
fate too and need our support?
Yet a well know group physiatrists and psychologists insist that doctor’s
time is wasted by patients that imagine the pain is more profound than it is? These
professionals do not learn the fate of those they have dismissed. This is where
the trouble begins. We need those professionals to be accountable for their
theories, and aware of the damage they have done?
They also seem unaware of the new line of research tracking down our bodies
many mechanisms, and how they control our many ecosystems. They seem convinced
that they can see another person’s pain, just by looking at them? That they can
tell what is going on deep inside a patient’s body without testing, investigating,
or spending time to listen to the symptoms and what they tell us?
It is society’s responsibility to make the difference? But our apathy based
on the enormous respect we give the medical profession; that they would “do no
harm” and are overseen by stringent controls for safety. So we step back, until
it happens to us? How many people, who looked happy, and healthy, died the next
day? How many young sports people die sudden deaths? Illness does not hang a
sign on your face to tell you what is going on deep within your body. Nor do
our emotions save us from illness or cause our deaths. Happy people do die. Feeling
young, being fit and looking healthy, death has no regard, it will carry you
off regardless!
No up-to-date figures are kept of how many adults or children have
ME/CFS, no figures of misdiagnosis, or treatments that have helped like Vitamin
B12. No SPEC scans that can show the damage. No figures are kept even in trials
of the patients that became bed or housebound, after PACE trial like treatments,
including those young children. Nothing is done about the false allegations of FII.
No figures on how many children taken from loving homes and what happens to
them. No autopsy’s to follow the disease and learn. These are stark failings,
don’t you think?
For those doctors; who were not fooled by the control the body with your
thoughts approach, were sent off to the GMC, who happily chopped of their heads
- figuratively speaking. The GMC allowed this to continue, why? Why are
parents accused of FII with no indication that is the case? They are given
little to no support after a gruelling and stressful court hearing, and are
coping with a chronic illness on their own.
These passive aggressive attitudes ripple through our society, so that
it has become the normal thinking. They systematically take everyone down; patient,
doctor, researchers, journalists and advocates of ME. They ridicule in public
so that ME is not taken seriously. They don’t care who gets in their way, even
good sound and solid science is brushed aside. Their ability to weave like a
snake in our society has been made easy? You only have to look at the Judicial
Review details, the many court cases, to see how far they as a collective are
prepared to go, and still prepared to go. No matter what the courts say - NHS,
GMC and our Government encourage this passive aggressive treatment. The House
of Lords debates with countess Mar, heroically stating truths, bare whiteness
to this too; spirituality sighted as the best medicine and the only support ME
suffers deserve in 2017?
It did not matter if those they defaced, dehumanised were suffering. The
more this collective got away with this passive aggressive behaviour, the more the
weavers promoted those that could have, or should have, spoken out. Again you
only have to look what happened when Philip Hammond wrote a piece in the Private
EYE on this subject.
This collective employ their chosen few, rightly believing catch the
doctors early and just keep repeating mind over body and it will sink into the
fabric of society. How many times do you go to the doctors to be asked are you
anxious? Well yes doctor, I do feel anxious. I need my two jobs, I feel so unwell
and I do not know what the flying fig is going on with my body. We have now so watered
down the true meaning of anxiety, and muddled it up with good reasoning and
protective concern.
They ridiculed patients in public or behind closed doors. They locked patients
up and exercised them to death, and then they hide or gloss over the facts. It
does not seem to bother them; that some of those were young children. Karina
Hansen’s medical records are beyond words. Naomi Whittingtom and her family
have put the truth out there for all to see. How the forceful physio can harm,
I could write endlessly about the blindside of society. How many children are
still hidden with no medical care or locked away? Lynn Gilderdale story hurts
beyond endurance. Ean Proctor’s court case is fraught with inconsistencies by
medical professionals that whitewashed over and never taken to task over the cover-up.
Sophie Mirza treatment is sickening beyond belief. Clair Wade along with all
the others children through ME history, will show you how detrimental NICE
treatment is. But none of these heroes’ collective stories are news worthy
apparently “it’s not like cancer”?
A lead paediatric researcher into ME tells us there are two arms of ME, One
that can get better, and the other not? That is all the information she has? No
reasoning to that statement? No data tests from previous trials show the damage
that might be done? The ethics committee, just on this paediatrics say so, agreed
we need to put young children through a FITNET program to exercise them unsupervised?
To see which group are harmed? Not why this might be? I kid you not! The sad
thing is there have been many such trials, and no good results? 1000s of
children put through trials that tell us nothing?
Our not so NICE, are willing to wait for this trial on 700 children, to
review their guidelines for all sufferers? Fluff a duck in cold bad weather. Even
after the fiasco of PACE trial? We have tried very hard to stop these types of
trials, but we are ridiculed as simpletons.
Can we trust them to be honest and true with their figures? Anyone who
has read the history of the PACEgate will know the answer to that. We are still
waiting for the results of another trial on children called SMILE, only it
doesn’t make our kids smile. Do they have to report the decline in health of
these children? Well their get out of
jail card is that ME is a fluctuating illness that can from time to time make
you hospitalised. The science proves otherwise. If you over exert past your
bodies limit, your body deteriorates. However keep your body within its limit
and you can live without deterioration, and even recover slowly. Turning this
truth on its head any decline can be explained away even if the child becomes
tube fed, catheterised, bedridden, it is just part of the illness? Is this
ethical?
Research proves beyond doubt that physical and mental activity harms the
body of an ME patient. So you would expect NICE, NHS and the ethic committee;
that passed the FITNET-NHS trial, will be keeping a close eye on the data?
Engage with the parents and children, make sure they are safe? Make sure the Helsinki
agreement is upheld and ultimately be held responsible for their actions, along
with the paediatric researcher’s team? You would be wrong!
Parents are silenced; accused of FII, the courts won’t let you tell your
truth. Your children are dropped from trials as recovered. Or as with SMILE
trial, parents were accused in a passive aggressive manor that they did not
want their children going through the treatment. When in fact the children were
too poorly to continue. They are then left unsupported medically and silenced.
NICE do not listen to the patients voice. Just PANTS science?
The group of weavers tell you; you
must be progressive and intelligent to understand the workings of the mind. You
must believe, but most of all you must not test the cloth they have so expertly
woven, and they themselves and their friends have tested. The results of the
trial you would not understand, because it is far too complicated. They explain
they were adrift for a while but they always knew where they would dock, you
vexatious lot. The most important thing is not to look at the data; it must be
hidden at all cost! TAX payers have paid dearly for the cover-up.
ME treatment can be equated to having
a broken infected leg with diabetes and told to walk, close your mind to the
pain, be happy and start to live. Yes it is that bad.
You must not ask for an x-ray to show
the damage done, because you will believe it? This would just show us your “illness
beliefs”; we can lock you in silence for that. Deny the damage or we will not
be nice to you, and you will not like us when we are angry! Would you trust
this sort of treatment?
As far as infection, they tell us -
what a ridiculous idea? Inflammation we can explain that, we have made it as
clear as mud! Not that we understand it anyhow? Who would do that in their
right mind? What doctor would do such a thing? It’s not as though that has ever
happened in the past? MS, crohn's disease, Epileptic fits, Stomach ulcers, coeliac,
Alzheimer’s, Autism the list is endless and still we think with just will power,
we can control these conditions? They are purely behaviour? Mind control?
Energy production, and metabolomics,
mitochondrial
difficulties, DNA what silly nonsense they say?
The weft and warp of the cloth is
Mass Hysteria and mind control.
Mass Hysteria may be all the fault of
the woman. They suffer this in greater prevalence the same as MS. Women are
discriminated within the medical profession, we know that. More women suffering
maybe down to the fact autoimmunity is different between the sexes. It is to do
with X chromosome amongst other things. Anyhow if their theory “Mass Hysteria”
was true more ME sufferers would be seen in highly stressed areas of the world?
We don’t see that. We do see outbreaks similar to infection or around infectious
diseases throughout the world. Take the Ebola outbreak for instance Dr. Abudul El-Sayed
is treating one doctor, who is still suffering after recovery from initial infection,
and his bloods have come back clear.
The mind is where the weavers got a
grip on the illness. They manufactured that the mind controls the brain, which
controls the body? How or why they reach this conclusion is uncertain, but
apparently it is beyond any doubt?
Science would disagree and say there
is a large amount of doubt. Our thoughts are just that, thoughts; some innate,
some subconscious and some conscious decisions. You cannot put them all
together and have one control box. Experience and behaviour are only part of our
complexity of control. We also are only beginning to understand the willed
action and how this can be disturbed by damage to the basil ganglia, at the
prefrontal cortex which we know facilitates willed action. We are only just
beginning to understand this innate and willed process and how this affects us.
Within our gut sits a large neuro
transmitter with massive amounts of serotonin, a collection of nerve bodies the
size of a cat’s brain, how does that affect our reactions and defence against autoimmune,
infection and our moods? Who knows?
We can cope with adverse situations
by a positive attitude, but to change our whole body’s complexities, who are we
kidding? Headless chickens spring up in my mind!
So where does this all leave people
with ME? Flying our Polka-Dot-PANTS in the wilderness for now. But with your
help things could change. NICE can be made to listen to good science and not
PANTS science.
Our complex dots are ridiculed, discriminated
against, demoralised, defaced and dehumanised in public, and we need to change
that, with your support we can.
I don’t want anyone; let alone a young
and venerable child to feel they have to be a super hero in order to receive
treatments their body’s need. It is everyone’s right as a human, to be treated
with respect.
I don’t want research carried out
that has known damage. The Helsinki agreement needs to be upheld, it is there
for good reason!
If you feel the same I would ask:
Are you brave enough to stand up
against fabricating “Illness Beliefs”?
To stand up for disability,
difference, suffering and hope?
Stand up for good doctors who “do no
harm”
Stand up for good researchers that believe
in open and honest science, and that have and still are proving all the physical
dots of ME?
Stand up for the best care for
patients so that our NHS gives the best advice and treatment?
Are you brave enough to stand up and
proud against NICE?
Are you brave enough to Fly
Polka-Dot-PANTS for ME?
Please put the pants as your status
for one week to show your support as NICE debate ME future and that of 700
children that suffer the indignity of PANTS science
