For some reason David Hahalam did not want to talk to me. Well I am not important, am I? After all I am just one of the 25,000 parents that would like ME taken seriously to protect the children from harm. A good solid diagnosis for a seriously abused illness, it would seem is too much to ask for. For them to understand, it is their responsibility to stop the emotional blackmail that goes on with CBT under their guidelines. Head against establishment wall I am afraid.
Perhaps they should note that CBT was no good in education and it would appear that in depression it is only a placebo effect, as explained by Oliver Burkeman in the guardian. So for a physical immune response, they are offering a Placebo treatment?
So here is their resonance and my thoughts in red. Please do add your comments in the comments box below.
Do you get the feeling they did not read my letter?
What will it take for NICE to do no more harm to children with ME?
How can they say no harm done if they have not asked those who have been harmed. Do we not learn from history?
When will NICE start listening to children and their parents, let alone the 250,000 patients who have been suffering decades of abuse at the hands of those reported to protect them.
What is the point of NICE to do no Harm?
This is the letter I have just sent to NICE, it is one of many. I sent it at 9.30 this morning 11th July 2017. Below is the one I have sent to my local MP, I will be sending this to all parties, so if you are reading this and you are in a party get in touch, PLEASE.
I don't expect to be listened to, but you have to try and maybe some of you will sign the petition from the ME Association and get involved?
http://www.meassociation.org.uk/2017/07/me-association-petition-the-nice-guideline-for-cfsme-is-not-fit-for-purpose-10-july-2017/
Dear Professor David Haslam, and Surveillance team,
Regarding the decision not to update the NICE guidelines on ME.
I am a mother of a child who has classic Ramsey defined ME. I have been coerced into giving my child CBT and GET against my better judgement. He went from 70% ability to a function of only 5%, for which I was blamed. I AM NOT ALONE IN THIS!
Through my due diligence and care, with an awful lot of research, attending Invest in ME conferences, talking to researchers like Ron Davis, Jo Cambridge, Fluge, Mella, Armstrong, Maureen Hansen, listening to Mark Van-Ness, speaking with Doctors such as Speight and John L Whiting who is working closely with Neil McGregor, my son is now able to get out of bed and have some normal but careful monitored activity around the house. It has taken years to undo the damage done to him from GET and CBT.
The damage done to myself, and my family is immense, the words for which I do not possess.
Medical staff try to back me, they know of treatments that can help, but they are aware of the constraints imposed on them and enforced by PACE trial believers, that are more akin to a cult than a guideline for health. This should never be allowed to happen. Doctors, not allowed to treat and support patients with known helpful treatments like Vitamin D? Or ask for tests, this is outrageous in any civilised society.
NICE should denounce the PACE trial, it is a flawed study on so many ethical grounds that you are fully aware of. PACE has been used to control, demoralise and harm those it states it helps, insisting the term CFS is used with no legitimate reason. There should be a public enquiry and I am sure in the near future there will be.
PACE has been based on the theory of “Mass Hysteria”, “Illness beliefs” and “spiritual healing”. This then alludes that NICE believes in Mass Hysteria and spiritual healing and forgoes science, and ethical treatment? Would parents be allowed this flimsy theory to deny treatments? NO!
The inability of a ME patient to process energy causing the body to shut down, is beyond doubt. Considering the body needs energy for activity, this then makes it nonsensical to give a patient activity as treatment, so therefore both GET and CBT are abusive, and could be construed as torture? Infections rise in many places including the gut after exercise, this has also been proven, along with lactic acid increase. The guidelines are untruthful and therefore should be overhauled and I am appalled you do not seek patients/care givers views, as they are the only ones who truly understand ME, and yet never get heard. Yet we are taunted at every turn, and left to defend against harmful treatment and misdiagnosis on our own. NICE is directly responsible for this.
NICE have allowed the abuse of patients and the demoralisation of disability, this has caused many suicides and clouded the reality of this condition, and stopped furthering the biological research that was happening decades ago. No records of number of patients, harms, changed diagnosis, or deaths are recorded, why is that? When this should be a matter of course.
There are no treatments for ME, which is inexcusable considering the physical evidence of disease. NICE should be open to all research and not close down the guidelines at every opportunity, only listening to one group of researchers that have a discredited theory or belief.
The guidelines have been used against parents and FII is a constant battle for families, where the NICE guidelines have been used to harm children, which you are fully aware of. It is then left to parents like me and charities that have no connections with the PACE trial or FITNET, MAGENTA or SMILE trial researchers, to support those parents as best we can. 25,000 children harmed, is unforgivable. The Centre for Disease Control in the USA have now taken both CBT and GET out of their recommended treatments, and have made sure it is clear that activity that causes symptoms should be avoided.
The term CFS is a manifested term along with Unexplained Medical Symptoms, which holds no science behind them, and used to confuse the danger behind many conditions. This manufactured term leads to misdiagnosis, confusion and ultimately death.
Many ME patients have co existing conditions like cancer, brain tumours, diabetes, kidney failure, EDS, PoTS, OI all left untreated because of the term CFS and the PACE trial, as it alludes to no harm of exercise and that the patients are just stuck in a cycle of thinking they are ill.
As with the America you should at least take CBT and GET from the guidelines, not to do so would put further children in danger of lifelong harm and disability. NICE guidelines should DO NO HARM.
This is an open letter and as before, a copy of which, I will be sending to Countess of Mar.
I have also attached my letter to my MP, which I will be sending today, and will be attaching this email also.
Many Thanks for your time
My letter to my MP:
Dear Jo Churchill,
I need your help and support as
my MP to guide me through how to stop false accusations of Fabricating or
Inducing Illness, for those parents, with children who have Myalgic Encephalomyelitis (ME).
You may have heard the program on
BBC radio four, 1File on Four about the way parents are treated, or the question
being asked in the 2House of Lords by the countess of Mar? It is very frustrating to
see the House of Lords frame a question about ME in the context of Medically
Unexplained Symptoms. ME is not Medically Unexplained Symptoms, It is
underfunded, lacks a test, and inappropriately treated but not medically
unexplained, the history and research from all over the world shows you it is
not dissimilar to Type 1 diabetes, most sufferers also have unknown aetiology.
There are many adults who like my
son, where given Graded Exercise Therapy (GET) which took away their ability to
live a normal life physically, and Cognitive Behaviour Therapy (CBT), which
took away all of their self-esteem and belief in self. If the first program
from the same reporter 3 Matthew Hill “Sick and Tired” 4 1999
featuring Ean Proctor amongst others. In 2009 he explains what happened to him.
Have we not learnt to listen to the children? If these experiences had been adhered
to my son would be at a much better physical state and safe? Who knows living a
normal life. Uan Proctors experiences are being relived in 2017. How have we
let this happen?
ME is classified by the World
Health Organisation as a neurological condition and is a disease of the Central Nervous System G93.3. You would never know
this as most Doctors are ill-informed or given the wrong impression, and treat
sufferers as mentally ill. This is both harmful physically; as the wrong
treatment is given and psychologically; if you are asking from your body to do
more than it can permit, you are left demoralised and feeling inadequate.
From the age of eight my son has suffered
at the hands of this misinformation, and was inappropriately given CBT and GET,
through the NICE guidelines as many are, 25,000 children are treated this way
and no number collated unlike other illnesses. Doctor’s lack of understanding
is partly due to misinterpreting the NICE Guidelines and my son slowly went
from 70% function to 5% Bedbound. NICE are aware of the situation and have been
for a very long time, and I feel if they had taken notice of the patients, then
my son would have been saved the horrendous behaviour from the medical
profession
NHS, who I have written to, along
with NICE have dismissed many parents in my position. ME is one condition they
do not allow the sufferers or carers to have a say in the guidelines, or in
treatment; which surprises me due to lack of research and funding, our
experience is of paramount importance? For decades we have been dismissed, this
has to stop. Like the Grenfell tower our voices fall on deaf ears, and I ask at
what cost to our country?
My son at the age of eight was
told to take responsibility for his illness and recovery, not to talk about symptoms.
He was also reminded many times; and in my view inappropriately, that I had to
give up my job to look after him. Many times I have held him racked in pain, as
he sobbed his apologies, wondering how the medical profession got so inhumane.
I was never listened to, or
supported. Later we found out my son has celiac, PoTS, OI and hypermobile
joints, all of which impact on his ME, and the symptoms of which they told us
to ignore. He is not deconditioned his body has failed him, you could see his
decline in a matter of weeks. He was active and then he was very ill. He is not
avoiding exercise, for when able he runs like the wind, breaking free for a
short time from his constant pain, dizziness, sickness, swollen glands like
conkers, every joy comes with a “payback” Post Exertional Malaise (PEM) an
inability to repeat exercise. It is quantifiable and testable, and for which a
group of researchers deny and lack the ability to understand. He is not “fear
avoidance” he grabs life by the throat, but laughing can send his HR into 200
beats per minute plus, this then takes days for his BP to settle back down, and
like anyone oxygen staved, the consequences are severe.
I have witnessed him have hypoglycaemic
like attaches, similar to those my Nanna Ann used to do before her
diabetes was under her control. I have nowhere to go, because of the constant
threat and real fear that any negative test, whatever they are, and who ever
has asked for them, would probably put us further under peril of not being
believed I can assure you it has been the scariest of
times, for when you hold your child, concerned over their physical health with nowhere
to go, and no idea what the end result of this severe episode will be - this is
the relentless place I find myself in. Imagine having a child with diabetes and
no one understanding the condition, worse still believing it is one of
avoidance of life, and not the physical illness it is. Imagine the damage done
to such a child not being given insulin when needed, due to lack of research
into the illness. Told to exercise and control their symptoms with relaxation technicities
that just don’t make sense of what you witness them physically going through,
and you will get a good understanding of how I feel on a daily basis, on my
own, with no support just ridicule.
They are working on how the ME
patients bodies use energy, and what causes the many differences they find in
bloods, cells and DNA, but because of the complexities and for many other reasons,
as yet they have not found a good enough, or cheap and easy to do test to
enable patients to regulate their energy levels, or doctors to confirm
diagnosis. More than nine biomarkers are waiting to be funded.
Many mothers like me are forced
to hide in silence. We hide because we are blamed, to get us off lists so they
do not have to report harms or the worsening of condition after treatments or
on trials? Over 200 parents have gone through FII, none have been charged with
Fabrication or Inducing Illness. That fact should say, all there is to say,
about how parents are treated when they have a child or worse, children with ME. But there is worse to
come. We are called MUPPETS by a leading Paediatric in the CFS field, who researches
a denounced psychological theory of “perpetuating illness belief”. This
research has to stop, a data exercise should be undertaken of all children with
ME to find out how many are house or bedbound, this will show the harm done by
GET and CBT, as all children are forced
to go through this treatment. A recording of all parents accused of FII when
they have a child with ME should be undertaken. All government organisations
refuse to collate numbers?
Researchers seem able to deny any
research that shows how harmful over exerting can be. When they are challenged
or asked questions, those that put forward those questions are called saboteurs
or militants, however world renowned they are. We know the smearing that goes
on behind our backs by some Doctors, Researchers, and Professors that have
closed seminars, Universities and mental health professionals. Still we mothers
do not buckle, we stay strong, supporting each other and we learn.
We learn how to handle the medical
fraternity; we learn how to tell hospital staff when our children fall ill with
chronic pancreatitis, kidney problems, cancers and many more co existing
illnesses. We support the medical staff when they are at a loss what to do for
our very sick children. We hold them as they crumble with no true information
about this common illness, and as they realise they have been fed the wrong
social landscaping, we teach them how to cope. Many good doctors are hounded by
others when they support parents, this has to stop?
We hold each other, protecting
each other, and supporting the best we can in educating the medical profession as
our children slip away into the abyss of ME.
25,000 parents know the pain of
ME, 25,000 children suffer in quiet dignity the humiliation of being told they
are not ill like cancer patients, and they do not deserve medical help or
support; yes that is said often in 2017 to our children. With over 9000
papers logging all the physical problems and testable differences of ME, with
little to no funding in taking those possible biomarkers further, or
replicating solid biomedical research. UK has done very little to none existent
purely biomedical research. You cannot find what you are not looking for?
We shake our heads in disbelief
when ethics committees pass yet another exercise research program that point
the finger at parenting rather than the illness, knowing if diabetes did not
have its blood test they would be treated just the same; exercise the symptoms
away, change your brain function by positive thinking?
I need you to supporting me, to
get ME recognised throughout Suffolk and the rest of the UK as the illness that
it is; a complex one that effects every cell and system in the body, so that
Education, Social Services, GPs and Paediatrics do not keep making false
allegations of FII, and those that keep doing so get educated in the
seriousness of this complex and chronic illness.
Then we need to give parents, carers
and sufferers the correct information so that they can be supported through
their child’s disabling illness, and find the best way forward with managing
their child’s symptoms and condition, without fear, until such a time a robust biomarker
has been funded and treatments can be tested against.
I have enclosed and email that I
have just sent to NICE. They were due to change the guidelines to take out CBT
and GET, but have now refused. It is worth noting that the Centre of Disease
Control in the US have changed and have taken out GET and CBT as treatments, and
noted that any activity that causes symptoms should be stopped.
I look forward to hearing from
you as soon as you possibly can make it
2. http://www.meassociation.org.uk/2017/07/countess-of-mar-and-lord-hunt-defend-mecfs-in-lords-debate-on-medically-unexplained-symptoms-05-july-2018/
Many thanks for
your time
Tina Rodwell
