9th February 2018
Sir Terence
Stephenson,
General Medical Council,
Fitness to Practise Directorate,
3 Hardman Street,
Manchester,
M3 3AW.
General Medical Council,
Fitness to Practise Directorate,
3 Hardman Street,
Manchester,
M3 3AW.
Dear Sir Stephenson,
I am writing to
you in support of Dr Myhill’s complaint against the PACE trial authors, due to
their flawed research, inability to understand good conduct in science, and as
professionals within the healthcare system.
They have
knowingly and wilfully dismissed the evidence of biomedical research. Made
persistent attempts to make sure the only treatments offered are their own. Their
beliefs and their power have stopped nearly all biomedical research in the UK, discouraged
new researchers in this field by putting undue pressure on researchers through
various means, including inciting hatred towards Myalgic Encephalomyelitis (ME)
advocates, and the sufferers.
Made vicious
claims and attacks on the researchers, advocates and doctors who support the
sufferers of, biomedical research into ME (Williams, 2013) .
Withheld vital
information from the medical professionals about the true findings of the PACE trial,
to enable proper consent to treatment. Taken away choice form sufferers and
their carers. Taken away from severely disabled people; including children the
ability to have wheelchairs and disabled badges for cars, without suspicion of
fabricating their illness, or that by offering such devices somehow this is
going to have a detrimental effect on their progress. Taken away the ability to
have any second opinion.
Wasted millions
of taxpayer’s monies, and resources from the NHS, knowing their treatments do
nothing, worse still are passive aggressive in design. Their actions are more
akin to a mafia gang, than that of esteemed professionals.
How this group
of health care providers can go against the Helsinki agreement in regard to the
PACE trial, disregard the World Health Organisation listing of ME, going
against all other independent medical opinion, with regards ME including,
renaming and conflating diagnosis to that of depression with the Oxford
criteria. Even after the case of Ean Proctor their manner with which they deal
with children and their parents, have caused untold damage. Their ability to
say what they like, is well documented over decades. Holding a different
opinion would show an ability to accept the findings of the trials they have
undertaken, and other esteemed researchers including Nobel prize winners, but
they do not.
I am aware that
NICE are changing their guidelines, as I attended their Engagement meeting on
the 16th January 2018. After this constructive Engagement meeting a
post popped up on my Twitter feed Professor Sharp who attended the engagement, liked a comment which
is appalling. “CFS/ME: Swedish couple lost hope, kill their children, commit
suicide. Why? In part because of the intense negativity spread by
individuals/CFS groups/researchers, saying cause is bodily defect and
nothing can be done. False. The children could get well!” Although Twitter
is a personal thing. Yet again they slander concerns of the ME community, and
turn a blind eye to research and cherry pick facts. Karen Hansen and many of
our children in the UK pay the price of this attitude.
Yet still Kings
College London with their Mental Health Skills for non-Mental Health
Professionals (IMPARTS) show a distinct lack of understanding and respect for
physical illness, and its part on the mental wellbeing of the suffer. Irritable
bowel syndrome (IBS); just to take one of their Medically Unexplained Symptoms
that they list with ME/CFS, can lead to great harm if misdiagnosis. IBS can be
one of the symptoms for a disease that can be easily tested like coeliac, to others
such as bowel cancer, but get misdiagnosed given wrong mental health treatments
which results in bad outcomes for both.
Personally,
their behaviour; as with the Proctor family decades ago, has had a profound
effect on me, my family and friends. On my son it has changed his forever in
many ways.
I am a mother of
a 12-year-old, who has had ME since he was 8. He followed the normal pattern
and one that is still allowed to continue, perpetuated by the PACE trial. I was
given no facts to make any reasonable consent to treatment; he was given no
investigational tests other than the normal blood test. This blood test
revealed a problem with low iron, but the consultant dismissed this as
unimportant.
Due to Sir
Professor Wessley involvement in the 2007 NICE guidelines, interventions or
treatments such as Vitamin B12, Thyroid, SPECT or special MRI scans not
undertaken or the understanding the relevance of in this disease. In our area of
Suffolk low Iodine is a problem, but this gets clouded over due to many doctors
taken to GMC repeatedly, for trying to help with such investigations or
treatments. (Rayman, Professor Margret al et,
2017)
(Rayman, Professor Margret al et, 2013) Professor Rayman uses
The Avon Longitudinal Study of Parents and Children (ASPAC) as mentioned in
many of Professor Ester Crawley’s work. Yet all her research is on increasing
activity with no other medical interventions and holds the same beliefs as Sir
Simon Wessley and uses the PACE trial to support her work on hundreds of
children.
With a disease
such as ME every little helps, unfortunately my son has a reaction to many shop
brought vitamins, but due to the teaching of Wessley and his colleagues, all
his allergies and Irritable bowel symptoms are dismissed. Healthcare
professionals are only interested in anxiety and depression or school
avoidance.
However, some
medical professionals, healthcare and researchers are getting to grips with the
importance of the microbiome of the gut. Their understanding has been held back
by Wessley insistence that everyone should follow their belief systems into all
physical illnesses such as ME, has a mental illness trigger. The reality is
many chemicals within the body shoved out of kilter does influence your brain
thought process. No amount of pushing through will mend that. Your moods can
change with a Urinary Tract Infection (UTI) but without treating the infection
you won’t make your moods better.
They also seem
to get confused with the word stress. When you hold a heavy weight, you put
stress on your body. You can be determined to hold the weight up to a point and
then your body releases the weight. You cannot hold the weight beyond your
physical strength indefinitely. It is the same with pain. They think they can
determine how much pain is acceptable for a sufferer to endure.
Sir Wessley President
of the Royal College of Psychiatrists and President-elect of The Royal Society
of Medicine, according to Kings College is going to shape the future of mental
health, this is very worrying (London, 2017) . In the Joint
Commissioning Panel for Mental Health, it once again made sure ME/CFS stays
were no biomedical treatment will be given, and obviously does not accept the
World Health Organisation that ME/CFS is an organic disorder and insists it is
a functional somatic syndrome. This denial of biomedical treatment, is in
violation of an individual’s ethical right to treatment.
Their actions to
put ME/CFS as a functional somatic syndrome has endangered yet again anyone
deemed “too involved” with their child’s illness. This includes any carer with
an ME sufferer and at a time when NICE are changing their guidelines. This will
be putting parents like me back under scrutiny of Fabricating and Inducing
Illness beliefs (FII), the old term of Munchausen by Proxy.
Sir Professor
Simon Wessley himself has used FII against children without a full physical examination
or understanding the mechanics of the body. Has denied this involvement on
various media outlets. Yet there was a court case and a commissioning group,
and the reading of his behaviour through this case, leaves a lot of questions
that need to be addressed as to why he still holds a high place within the
medical fraternity. (Court, 1992) .
What happened to Chairman Miss Patricia MacManus report?
I therefore
wonder to who’s best interests ME/CFS is put under functional somatic syndrome.
My son had been struggling
after a tummy upset with headaches of new onset, repeated infections, low
temperatures and high temperatures. I thought he had sinus problems. After
having one of his spike headaches in the GP consulting room, the GP sent him as
an emergency to hospital.
Migraines with
aura are known and black spots are a common feature, when I asked about the possibility
of migraine I was dismissed. These types of migraines are associated with
neurological problems. This was not investigated, and no medication has been tried
in the four years of my son’s illness.
That afternoon
and through the night the medical staff were waiting on the consultant to
authorise a MRI scan. The next morning the consultant heard the history and diagnosed
with Post Viral Somatisation Disorder with multiple
symptomatology, on his medical records but not the letter I was sent.
The consultant seemed
to think I was asking for the MRI and made me feel this was an irresponsible
action for someone like my son, who just needed to get over a virus.
I want to make
this point very clear - I did not ask for a scan, my son was sent to hospital by
a GP. This shows the attitude of the
medical professionals - be mindful of over indulgent parents, give no tests,
because this feeds into the parent’s beliefs of illness, as advocated by Sir
Simon Wessley.
My son was sent
to multidisciplinary team and put on Graded Exercise Therapy (CBT) & Cognitive
Behaviour Therapy (CBT), without further investigations. At what cost to NHS
and to my son?
The PACE trial
and all the other such trials based on this, was not explained to me and I was
not informed of the harms that can be done. (Caroline wiltshire, Tom Kindlon, Robert Courtney, David Tuller, Bruce
Levin, Allem Matthees, Keith Geraghty, 2018)
“Patients have shown various physical
abnormalities when tested 24 hours after exertion”
The PACE authors
resistance to openly share the data has been appalling, harmful and
discriminatory, especially when you consider tax payers money has gone into
this trial along with the DWP, this then draws into question the ethics of not
allowing patients voices to be heard.
My son’s team consisted of Paediatric
consultant, Psychologist, and physiotherapist who dealt with hypermobile
joints.
Following the CBT and GET regime my son was
declining very slowly at first. I was questioned and interrogated by the multi-disciplinary
team over my closeness to my son, my views on his illness, and that I need to encourage
him to school. By a few months his decline was so evident 2-3 days after him
doing any form of activity, but this was impossible to convey to the team. Post
Exertional Neuroimmune Exhaustion (PEME) should have been taken seriously to
stop further damage to his health. On some days my son would open the fridge
and ask me “what is my name mummy”. He was blacking out, loosing balance and
was in so much pain.
My son enjoyed
going for a Pizza at a local restaurant, but this was getting too much for him.
At his worst he thought his head was going to explode and would repeatedly ask
me if he was going to die. How can you explain the impact of daily life to a
team, when their treatment is CBT, where you must ignore all symptoms as
heavily promoted by the PACE trial Authors?
If they had
listened perhaps his diagnosis of celiac would not have taken over two years,
and the damage done to his intestines would have been avoided. That damage
reduces the body’s ability to absorb nutrients and vitamins. This was at such a
young age and at a time he needed all the vitamins and minerals from his food,
and all the support to enable him to recover. Furthermore, knowing that he was
iron deficient in his first blood test should have sounded warning bells,
especially when we were telling the team - his favourite meal was pizza.
We tried to explain
he was very poorly after going to the pizza restaurant, he was not reluctant to
go as they kept suggesting. They tried to convince us it was his way of
controlling us. This has left him with a higher risk to lymphoma. The emotional
impact of their insistence of their view of our son, has had long term
consequences to his emotional wellbeing. The impact on us as parents, on his
sister and brother on our collective emotional wellbeing has been immense.
When I asked for
help with his increasing pain levels, I was assured that just by acknowledging
his pain - by patting him on his legs, would suffice. I should modify my
language around him, not acknowledge his symptoms, and to concentrate on his positives,
using encouraging words instead of my anxiety. The fact it was his words and
understanding I was using, was lost in their belief and understanding of a denied
illness, perpetuated by Wessley and his colleagues.
I questioned the treatment and asked if anything else could help. I
took in some information that I wanted to discuss. I pointed to the part in the
Myalgic Encephalomyelitis Adult and Paediatric International Consensus Primer
for Medical Practitioners, (International Consenseus Panel,
2012)
about Post-Exertional Neuroimmune Exhaustion (PENE) and explained about his
symptoms being delayed. I did not realise this was not allowed, or that it would
put me under further suspicion.
The next time I
went to the hospital my son went into another room with the physio, who till
that point, I trusted. Previously she had explained to me about adrenalin rush,
and the need to take every daily task as an activity, resting in between. At
this point my son had to rest from putting on his socks, then putting on his shirt
etc. He would become dizzy breakout in cold sweats, feel sick and he would
explain that his world had gone black. So, her advice to me had made sense, I
thought we were in safe hands and was grateful for her support.
I had taken my
Sister-in-Law with me to that appointment, as I felt threatened, and she had
witnessed my son’s decline. I also thought I had miss understood the
psychologists attitude towards me. We both came out of the consultation even
more confused, and alarmed.
The physio had
encouraged my son to stand from a sitting position 20 times, and to catch a
heavy ball. I had not been informed this was going to happen. He has never
recovered from that day. He became bedbound.
My son had never
been tested with Post Orthostatic Tachycardia Syndrome (POTS) even though this
is well known to be associated with ME/CFS and hypermobile joints, in fact in
1986 Ramsey would diagnose ME on all my son’s symptoms. (Mavin, 1988) . Ramsay mentions
that this disease can alarming become Chronic, so not to take great care around
ME is to do great harm.
The diagnosis of
POTS for my son took over three years. The damaged caused by this lack of
diagnosis not known, but the build-up of lactic acid has been known for a
decade or more with ME and well documented around the world. This should have
been explained to me, as this increases with any activity and affects the gut
and brain. Who stopped the 2010 revision of POTS on the NICE guidelines with
regards to CFS/ME?
At this point
they wanted to change the diagnosis, as children recover from CFS in 6 months
to a year. All the allowed research by NICE would seem to suggest this, with
media coverage of research by Professor Crawley emphasising this you can hardly
blame the medical profession for believing this is true. But her research is
based again on the same flawed methodology as the PACE trial. The conflation of
Somatic, CFS on ME is the biggest problem here, not understanding the
difference is very harmful.
They wanted to take
my son into hospital for further assessment and rehabilitation, with little
contact from me, so that they could re-educate him? Autism and other somatic
disorders to do with pain were mentioned. As there was nothing wrong with his
body, in fact they explained to me he enjoyed the exercises. The NICE
guidelines stipulate that Heart monitors should be warn when exercising, and
about Post Exercise Malaise, so why did they not understand my son’s exercise
intolerance? (NICE, 2007) After all everyone
agrees, any form of activity even thinking causes a rise in symptoms.
At this time, he
had no further tests, even though I had tried to get them to look at the
Paediatric Canadian Consensus Criteria, had marked all the relevant bits that
clearly showed he was suffering from all the symptoms needed for ME, and had left the booklet with them. Or was it
because I had done this, that they now questioned me?
They were aware
at that time he had inserts in his shoes, due to musculoskeletal problems and
he bruised easily. So why had they not tested him for a potentially life-threatening
condition such as Vascular type Ehler-Danlos syndrome.
Why were the
purple stretch marks on my son’s thighs and knees not looked at as potential
signs of problems with his
adrenal glands? As these markings are a sign of the adrenaline rush, the physio
had told me about previously.
Why was not a Lymes test ordered, or thought of, yet again
all the symptoms point that way?
Why was not sepsis thought of, with his continuing low
temperatures. Since 2007 low sepsis has been talked about, and new research is
looking into this also (Johnson,
2018) Cort
Johnson overview of this is a good rounded piece.
All through this
process I would explain, it was not that my son did not want to go to school,
be with friends, ride his bike be free. It was the fact his body could not
cope. My concerns about his health were ridiculed and belittled. Yet I am the
one proved right with further diagnosis.
Many parents
learn to protect their children from this passive aggressive behaviour of CBT and
GET, as prescribed by the PACE trial. I would go so far as to say, it is the
same as being asked to torture your child, many parents are left feeling this
way.
Yet we are given
no choice by the professionals due to the teaching of the group that is led by Sir
Wessley, professor White, Sharp and Chalder. More importantly Sir Professor
Wessley who determines allergies are modern day replacements of the devil, or a
way of people being able to blame something on ill health, instead of taking responsibility,
is allowed to cloud medical teaching and government policy, why?
The PACE trial
has allowed other trials such as SMILE, FITNET, and MAGENTA to go ahead. These
trials on young and vulnerable children are akin to grooming the child and
blaming the parents. The evidence of this is the number of parents falsely accused
FII. If they are taken to court, even if they are proved innocent, they are
affectively gaged from stating the truth and are not allowed ever to work with
children. It breaks families up and causes untold stress. This protects bad
science and perpetuates the myths about CBT and GET. Making bad policies and
guidelines. These treatments do not work in education, so how could anyone
assume they would work with a multi system disease such as ME?
At no point have
I been supported or given empathy. My life has been taken from me, I have seen
as Mrs Proctor had all those years ago my child decline in health, unlike Ean
my son has not made a recovery as yet. I have been accused by all sorts of
outrageous and offensive behaviours, and no one bats an eyelid at their
consequences to me as an individual. I have not formally been accused of FII,
that does not mean it is not on my, and my son’s medical records.
It was when I
heard Henry Wolsey words that I began to understand my sons condition “I have
too shot my bolt” He said when he could no longer put one ski in front of
another. Henry died on 25th June 2016 of complete organ failure due
to a stomach infection that they could not treat. On the 23rd June
2016 Maureen Hansen finds a possible biomarker for ME, with infections in the
gut (Hanson, 2016)
Many sufferers
with ME die of acute organ failure and looking at my son’s physical condition I
would say that it is credible and provable. Furthermore, you do not have to look
too far to see the evidence from here in the UK, Australia and the US all
around the year 2005, and yet autopsies to find ME are stopped why?
Parents are left
afraid to complain, are silenced by courts. I could not go to PALS to log a
complaint to stop this from happening to others, I was advised not to. Looking
to seeing what happens to Whistleblowers, and my previous experiences, and
those of other mothers that have tried to complain, they were right to advise
me not to.
Parents cope
with all the illnesses within ME, and they learn to fight for their rights.
They do not go to doctors for help, there is no help or understanding, it has
been eroded by the PACE trial.
To question
yourself over your beliefs and the way you parent is not an easy thing to do.
To fight against all your instincts to keep your child safe, without any
scientific justification is wrong, and harmful to your wellbeing. You are left
in utter conflict, turmoil and self-doubt. At this pivotal point you can do
many things, for me I calmed the rising panic about the multidisciplinary teams
accusations, and viewed the facts.
1. Would my son be better off
without me? Yes; if they accused me of FII and took my son away to rehabilitate
him.
2.
Do I believe ME is a physical
illness? Yes; there is simply too much evidence including autopsy’s reports to
be in any doubt, too much research all pointing to Ramsey diagnosis of ME.
3.
I know that Thyroid, Celiac, Urinary
infection and lack of vitamin B12 can all have a profound effect on emotional
wellbeing, so Wessley and the PACE trial authors theories about illness
beliefs, just don’t add up.
4.
Am I strong enough carry on
defending my son? I have no choice.
Medical
professionals have taken an oath to do no harm. They could not possibly do this
to children if they thought it was wrong.
If there was
proof that this was a physical disease, they would not use such passive
aggressive methods to control you, and groom your child into thinking that it
was your fault that they stayed ill, would they? Should they use these methods
at all to anyone, let alone very young and vulnerable children?
Governments are
there to serve and protect the people, they have set up things like the GMC and
NICE, they would not let this happen.
These false
understandings are what we fight daily. This could never happen in the UK 2018?
We had the mad cow disease, AIDS and the blood contamination scandal, Ean
Proctor, not to mention Shipman, we have learnt our lessons?
In 2004 there
was an interesting study by Peter White al et who has close working ties to Sir
Wessley, Department Work and Pensions and insurance industries, it showed that
TGF-a and TGF-b were elevated after exercise (Peter White, 2004)
"Finally, we found that exercise induced a
sustained elevation in the concentration of TNF-α, which was still present
three days later, and this only occurred in CFS patients."
"The causal mechanisms involved and the
direction of the relationship between these mechanisms remain to be elucidated.
Altered cytokine balance, for example, following an infection, may modify the
threshold at which cytokine release occurs with exercise or activity, setting
up a vicious circle. These processes could contribute to the post exertional
malaise, myalgia and the central fatigue that characterize CFS (1, 2,
4)."
TFG-a has been
closely linked to kidney failure for years now, and I am sure in 2005 Sophia (Wilson) death could have
given vital information to biomedical research. For some reason it is never
mentioned. I do wonder what the other information we would be gleaned, if other
autopsies had been pieced together over time with the knowledge we are finding
now from new research.
TFG-b in things
like cleft pallet and abnormal lung development are being researched to why was
this paper not shared or highlighted. Why was this paper put in the bottom
draw?
My son was later
diagnosed with hypermobile joints (they don’t diagnose EDS because that sticks
a label on him?) Coeliac, and PoTS. All of these conditions are constantly
questioned by this group of practitioners involved with PACE trial. As time
goes on his joints are becoming more supple and pliable, no one takes notice or
evaluates this condition.
It is clear Sir
Wessley cannot diagnose any condition consistently; you only need to look at
his Camelford water poisoning paper and Gulf War syndrome theories, along with
the case of Ean Proctor to see that. (Williams, 2013)
“in the words of
Professor Martin Bland, one of the UK’s leading medical statisticians, it is
important that false information should not remain on the record to be quoted
uncritically by others: “Potentially
incorrect conclusions, based on faulty analysis, should not be allowed to
remain in the literature to be cited uncritically by others” (Fatigue
and psychological distress. BMJ: 19th February
2000:320:515-516). Wessely’s “incorrect conclusions”, however, remain in the
literature to be cited uncritically by others and therefore may result in
iatrogenic harm.”
Yet his is the
leading voice in ME/CFS behind the scenes and him and his wife influence the
BBC and he has now been asked to do a review into Mental Health, against great
and esteemed opposition. How does that happen?
I am also aware
of what could happen to my son if he has the more serious form of EDS. An
acquaintances daughter bled to death due to this condition, yet still the same
people that believe ME is an illness belief, think that EDS, POTS is MUPPETS - Medically
Unexplained Physical Psychological (ET) Symptoms.
I have had to
fight hard and tactically to get those three diagnoses, that to me are the
important ones. I have lost all trust in doctors and the system. I dare say
there are more medical problems to investigate, but I have learnt from bitter experience
to stay away from doctors and hospitals.
I am in regular
contact with mothers who, like me have no place to go, with children poorly
diagnosed, given the wrong treatment and forced into harming their children by
paediatrics, hospitals, education, Social Services, friends and family. We live
in constant fear for our children.
It is the
physical and emotional harm on my son though that astounds me.
What evidence do
I have of the harms, none because children with ME are never taken seriously? I
do wonder, however if the appropriate scan was performed what repeated damage
they would find. What damage has been done to his organs? How much damage has
been done due to the release of TGF-a and TFG-b on his body. What infections he
has within his gut. Is his mitochondria working does he have Mass Cell activation?
What has happened to hypothalamus and his hormones, thyroid? The list is
endless, because ME is endless. I have learnt to do the best I can to cause no
more harm and support my son.
I can however
tell you of the harms done to his wellbeing and emotional state, and the impact
on his life. It has been catastrophic, eroded by such things said to him like
“You don’t need that wheel chair you are a big strong boy” when his legs would
collapse underneath him, “you do realise your mum had to give up her job
because of you?” all at a time when his normal life was slipping away from him,
with no explanation, understanding or empathy.
The GMC, the
government and the medical profession, but
mostly the PACE trial, have ripped
my son’s belief in his *self* apart. He is just one of the growing numbers last
counted over decade ago, at 25,000 children in the UK. Over 200 parents falsely
accused of FII; numbers not known or counted, and many more that have narrowly
escaped due to asking themselves those questions at the pivotal moment as I had,
calling on those brave doctors who are aware of the consequences to them,
protect our children as the state and all the medical profession should do.
He will never be
that boy who used to let the dogs out of my backpack and hold them on his lap
as we bike to school laughing. I will never again see that boy that never
walked when he could run, never run if he could climb, the one I was confident that
one day would fly to heights that he dreamed to live up to. That time in his
life has gone
How can a child
be robust enough to cope with the treatment as prescribed by Wessley, Sharp,
White and Chalder?
PACE with its
form of CBT and GET, as Trudy Chalder teaches shows how far they allowed to go with
regards to the wellbeing of children in their care. (williams,
1996)
In a
letter dated 22nd November 2003, the mother of a young man
severely affected by ME wrote:
“The
consultant in charge wrote to Dr Wessely for advice. On my son’s hospital file
is a document dated 07.03.01, a “Draft Action Plan Proposal following
consultation with Trudie Chalder”. I find the action plan shocking, and I
was particularly disturbed by the penultimate paragraph, which states:
“We
expect (her son’s name) to protest, as well as the activity causing him
a lot of pain. This may result in screams….it may feel punitive”.
When I
hear the recording of Sophia being forcefully taken away from her home, and
read her letters, as a mother I ask the question how has society let this
happen?
Sophia’s case:
what was found as one of the causes of death was acute anuric renal failure,
ie. a very sudden onset of lack of output of urine arising as a result of ME/CFS.
This is
years after Ean had been brought to the attention of the Queen, who had passed
on the information to the Secretary of state for health. So, it has been known
how children were being treated from as far back to 1986. (Proctor, 1989) Ean asked his parents "do I have to die to prove
how ill I feel?" This has not changed in 30
years
But we have all
let this happen. This situation has have taken my son’s dreams and crushed his
body.
He will say often
to me “Don’t ask me how I feel mum, I have to deal with it. I don’t want to
look back it hurts too much; I don’t want to look at the future, because I know
people don’t believe me. I want to live for now, so I can be happy now.
That is what
they have left my boy with, and my family now must live with the consequences
of that.
Yours Sincerely
Tina Rodwell
