Dear Laurie
Taylor,
I have listened to your show for many years.
Working at home enables me to prepare a meal for the family at the time your
show comes on. It is thought provoking and on the whole balanced on the side of
the professional that should know better than the - put down and silenced public.
After listening to your weekly show on
Wednesday 4th January 2023, I thought the time has come to write in
and explain the reality of social conditioning; with its foundation in the
belief that the patient is to blame, the marketing and gatekeeping of wellness-based
healthcare by a few that have the ear of the Government and the DWP. The
connection here between psychiatry, the pace trial and health is discussed by
Brian Hughes
The impact on mental health and autoimmune is
well known the inflamed brain is also well known but ignored Edward Bullmore
discusses this in his book
To understanding complexities of post viral
conditions such as Long Covid and ME and the work to dismiss the long-term
impacts on health and mental wellbeing, you need to understand the ever-changing
names such as Functional Neurological Disorders; once called conversion
disorder or Medically Unexplained Syndrome which again was once called somatization
disorder, and how these impacts on the NHS and care. We should know enough
about infections by now to understand the damage done. What has AIDS, Celiac,
Migraines, rheumatoid Arthritis, Stomach Ulcers, and diabetes taught us?
You once had a program on the placebo effect,
where you called people like me activists, you also used the term cfs another
way of hiding the disease that Myalgic Encephalomyelitis (ME) is known to be. You used this terminology again as some sort
of derogatory label on Wednesday’s program, a put down, which I find offensive.
I wanted to explain why a difference of opinion
in science, does not mean the patient/advocate or as you put it activists are
wrong. The harm of demanding mental health over physical disease, has been written
down over hundreds of years. Science should be based on “prove you are wrong
and if you can’t then you must be right”. To use this in its proper context,
first you must explore all the facts and possibilities and not rely on the
foundation of opinion without the lived experience, which mental health has
done with ME.
First and foremost, the derogatory term of “activist”
was used on women suffragettes. Since this time women have been fighting
against mental health disorders to get the right information and the right
healthcare - just look at heart attacks and endometriosis with long history of
social conditioning that women have “mental liabilities”.
The word activist has been used on advocates
like me, who have made changes for those with autism that were put and still
are in asylums or as we now know them as homes, and those who suffered from
many; now known conditions that are still medical unexplained but accepted like
diabetes and celiac disease. On Wednesday’s
program it was pointed out how women are targeted and held to account by
society with the mind, body, wellness beliefs that have infiltrated our healthcare. This impacts women like me, who become
mothers that have children who dramatically decline into disability, with no
real testing, empathy or understanding - just judgment and opinion that goes
against all the science. A nurse who looked back on the Royal Free outbreak
takes us through the transference of medically accepted understanding to mental
health opinion used for political purposes
My son was 8 when he had an obvious post viral
condition, his blood showed signs that were ignored of celiac disease, which
was two years later picked up. However, there were other signs of his body
under stress. Instead of testing and looking for physical disease, they gave me
their opinion and him CBT and dismissed his physical symptoms as somatic
disorder. The harm inflicted on him is there for all to see in his lived
experience, the history of medicine, and by thousands of others over decades
that have been treated just like my son, starting most notably from the time of
the Royal Free outbreak.
This has led to a difficult situation and long-term
physical and mental care problems, not only for my son but also to me. Being
accused of Fabricating or Inducing Illness (FII) is hard to fight when family
courts only have to think you may cause emotional harm in order to take
your child away, backed by opinion with no evidence. If a mother restricts a diet
for instance, she is automatically assumed guilty even with Drs notes giving
clear evidence of autoimmune diseases. Unbelievable you would think but the
evidence is all around us. It is written in case studies, in the voices of the
young people able to speak out on social media. How many are hidden that are frightened
and fighting for the truth.
Please stop using inflammatory words such as
activist, when you have not fully understood the problems by alluding to those
who are on the internet or on social media. We have seen the damage when a
general opinion about misinformation is put out by journalists, professionals,
and medical professionals the PACE trial shows this. You did touch on professional
misinformation but I feel you need a program to look further into this. We need
robust understating of what wellness and mental health is going forward
especially when evidence points to the reality spoken by activists like me.
You also stated about abuse on the medical professionals
from advocates in the ME community on the program about the placebo program. However,
this has been disproven and the last time this accusation was used on the ME
community it was by Professor Crawley who held up a poster done by an artist
who asked Professor Crawley not to use his work in her TED talk. Fabrication in
the medical world it would seem is allowed, but those using science and facts
are called FII supporters or activists, so please put the record straight, the
facts are here
Remember science, healthcare providers the
government get it wrong and do politicly chose to misinform the public and
there is a balance that needs to be met here by respected people like yourself,
it is your duty, especially as we go through this difficult pandemic time.
Patients can be more informed about their condition than those who say they
treat the condition.
As a balance and redress of the issues I have
raised around activism, wellness, and healthcare in this letter it would be
good to have Brian Hughes who is an academic psychologist and university
professor in Galway Ireland. He specialises in stress, health, and the application
of psychology to social issues. He has written widely on the psychology of
empiricism and of empirically disputable claims especially as they pertain to
science, health , medicine and politics. Along with Edward Bullmore MB PHD FRCP
FMedSci the balance of our understanding, thinking and wellbeing would be
balanced with what we know.
If you could let me know in good time, when
this much need balanced program is to be aired, I would be grateful. We all
have to take responsibility for the facts of science to protect the population
and patients in particular – Health is a balance of diet, social standing,
environment, physical and mental impacting on genetics stressors and should be
seen as a whole, not in part or bias opinion.
Yours Sincerely
Tina Rodwell
