My son was left bedbound by Cognitive Behaviour Therapy (CBT)
that told him not to speak about the increasing pain, the blackouts he was
experiencing, the stiffness and cold joint pain, the headaches - when he
thought his head was exploding. The symptoms are all part of Post Exertional Malaise (PEM). This makes ME unique - every
activity, thought, feeling or laughter causes PEM. ME is not a fluctuating
illness without a cause. The fluctuation comes from
overdoing, which causes increasing severity of symptoms, and further damage to
the many systems within the body.
You keep in a rested state you
can live relatively free of pain. You increase in the wrong way at the wrong time;
you cause damage to your body. This has been proven, and can be tested with a
two day physical cardiopulmonary exercise test (CEP). This test
has been known about since 2011. If you
do a CEP test and then do MRI or SPEC scans, with
bloods taken, the damage can be seen! Blood serum and microbiome tell a
complete, yet individual story. We will have to look at biomarkers in a
different way as every little thing affects ME sufferers, changing the markers.
My son was 8 in 2013, when the psychiatrist and multidisciplinary
team he was under insisted on him going to school, and put him on Graded Exercise Therapy (GET).
They said he had reached a baseline? He was suffering more pain but they told
him not to mention this, so how could they tell he had reached a bassline where
his symptoms were under control? This multidisciplinary team did not test for
POTS, EDS, coeliac or infection like Lymes. The coexisting conditions well
known to those that understand ME.
Since the beginning of time
people have understood about Flu and the symptoms? That awful stage of when your eyes are suck
with cocktail sticks, your ears are sore and are ringing, joints ache and burn,
cold sweats or raging temperature, your tummy is out of kilter and going to the
bathroom is like climbing Mount Everest? You cannot face eating and you
constantly feel sick. We did not need to know its pathway and we understood it
took some time to get over. That was until HIV and AIDS. Now we understand that
all sorts of chronic conditions can be caused by assaults upon the body, we are
learning how B, T cells work and cytokines. The cause of inflammation and how
autoimmune can seriously impact upon a body after infection, we are beginning
to understand how Sepsis sets in.
We are beginning to appreciate
how all the dots of Cells, cytokines, ATP, inflammation and DNA changes impact,
glycolysis and lactic acid cycle, all these problems, centre around the central
nervous system, gut and brain and the damages or changes through our DNA.
Yet I am the one who is told I am
in “science denial”, an ME activist portrayed by Professor Crawley
as some sort of criminal, for
wanting to learn all I can about the illness that consumes my son? A person who
has a belief that I cannot let go of? Once silenced by threats of Fabricating
or Inducing Illness, but NO MORE!
I have been abandoned by the
medical profession! They don’t know about all the physical problems and only
told to treat with ever increasing activity. I am seen through the preaching of
Professor Crawley. SMILE trial based on the Lightning Process, FITNET-NHS with
the WII fit, parents re-educated about illness beliefs? Set on by society
because my child’s body fails to keep up.
I have found the facts. With those facts I now
have my son out of bed but house bound. So when you listen to Professor Crawley won’t let the
Children speak of their negative experiences, and carry on with exercise
regimes REMEMBER DO NO HARM REMEMBER ME!
I would like to take the time to explain what happens to a child with ME as Professor Crawley who educates other doctors, and does not seem to grasp the concept or take the time to observe. Any activity causes the body to disregulate in may systems deepening on the ME suffer as an individual. This is from watching TV to laughing at a joke. https://youtu.be/DNNeE6rhTm0
I would like to take the time to explain what happens to a child with ME as Professor Crawley who educates other doctors, and does not seem to grasp the concept or take the time to observe. Any activity causes the body to disregulate in may systems deepening on the ME suffer as an individual. This is from watching TV to laughing at a joke. https://youtu.be/DNNeE6rhTm0
Interview with David Tuller PhD, May 2017
https://www.youtube.com/watch?v=xbikuCqoD98&t=160s
Stop The Abuse - Dr. Myhill On PACE Exposed
https://www.youtube.com/watch?v=LasPOnRx1Ek
