NICE have delayed again the publishing of the new Guidelines for those with ME or CFS and here is my reply.
Dear NICE
Can you confirm that all of the committee members had signed the guidelines off.
If this information is correct, could you give a full and transparent reason as to why you have delayed for the third time, the publication of the ME guidelines.
That by your own manual and procedures that state that you can only delay a guideline publication once.
That NICE is in breach of its own due process as mandated in its third delay.
I believe that this action of delaying for a third time, now warrants a Judicial Review and with transparency so that the public can be assured the correct protocols are followed.
That the NHS uphold their 7 core principles and that the Government uphold their duty to keep UK public safe.
That you have knowingly kept those medical professionals, researchers, patients, and advocates in the dark and allowed some chosen people, who have vested interests in CBT and GET to have secret meetings to influence the outcome of the guidelines.
I have been advocating and giving a voice to children and young people with long term chronic and rare diseases, for 6 years now. In that time, I have witnessed the trauma that medical gaslighting has done on children, young people, and their families, when they go through inappropriate ME/cfs services.
I have seen the confusion that the PACE trial and the teaching that ME/cfs is an illness belief. I have seen the suffering of the idea that pushing the patient is the method to recovery, through CBT and GET fail young people so badly, that some have lost their lives, while others are left house, and bed bound for the rest of theirs.
There has been a steady increase in that trauma, with a decrease in the understanding that ME is biological in nature. Where once there was an understanding of complex diseases, diseases with ongoing inflammation, autoimmune and infection. That understanding has been covered up with the NICE guidelines of 2007 and the pathways that they created.
CFS centers do not, will not or cannot diagnose ME, Lymes, EDS, Mast Cell, POTS, post viral, autoimmune diseases that can and do show in those with ME.
They will not understand and refuse to acknowledge the complexities of the lived experience due to their irrational belief in the only treatment they support, and this is causing a lack of research funding into biomedical reactions, which result in ME and now Long covid.
I have seen the fabrication of mental illnesses used on those complex and perplexing conditions that has been allowed to continue on those patients and it is shocking to have received the news today that another delay has been allowed to happen due to discrepancies between fact and their fiction.
NICE state that unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/cfs may not get the care and help they need. What we and NICE have found out through the last three years, is that ME and cfs patients do not receive the due care, understanding, treatment or testing that everyone else does, this is discrimination.
Trauma is caused by professionals when they do
not listen to the lived experience, are not made to take consideration of all
the evidence and do not consider what they do is harmful. Even when legislation
and law dictate, they are able to abuse their power over the system designed to
support good health and the safety of the patient. We see violations of:
Do no harm
Duty of Candor
No decisions about me without me
Full and informed consent with all the
facts known about impacts of treatment.
None of the trauma is logged by the CBT and GET professionals, neither are the suicides or falsely accused mothers of fabricating or inducing Illness. Mothers who have been forced to push treatment on their children against their better judgment, because those that advocate CBT and GET accuse them and that of their children of not trying hard enough and have been shamefully treated.
There is no accountability or Duty of Candor and therefore no improvements have been made in cfs centers, due to the control of those professionals that have forced CBT and GET as treatments and have continued to research these treatments against all common sense and science.
NICE guideline is there to enable the public to gain information, and support Drs to make the right choices on treatment, it cannot be made to go against its own findings. It must not be controlled by one small subgroup of medical professionals, that are known to misinform the public, is more vocal and have more clout than those that treat in a more holistic and informed by science and the lived experience of the patient.
NICE at the engagement meeting with regards to ME gave promises and assurances, if kept would have stopped avoidable deaths, children taken into care or going through the child protection system, medical cruelties and harms, Social Services mismanagement of children and young people with ME, Educational SEND disputes, discrimination within the Family Courts and the confusion now upon us in this covid-19 epidemic.
Viruses were once understood and their devastation they caused accepted and worked with knowledge and not against it. Yet in 2021 they are misrepresented as an inability of the patient to push through the pain, causing discrimination. Because of that discrimination and biases of beliefs with treatments such as CBT and GET, NICE have indirectly with their 2007 guidelines, supported by their inaction suffering on the most vulnerable and allowed that to continue over the last 3 years. NICE has a Duty of Candor that needs to be upheld in this making and delay of the ME guidelines.
NICE must keep in mind when they are building guidelines the obligations under law and regulations that prohibit discrimination on the basis of disability, race, color, national origin, age, sex and exercise of conscience. When they allow delays and bias opinion to influence when and how the guidelines are formed and released causing unrecognised suffering.
Causing disparity between your guidelines with such conditions of equal disability - such as between AIDS and ME should never happen. Sadly, with ME their lives on a day-to-day basis are more impacted upon, not least due to the attitude with which they are seen by the medical profession. We should look back at the journey AIDS had and understand the reasons why having psychological input can be so problematic and discriminatory.
We should have learnt our lessons of how this holds back our understanding as it did with cancer and smoking related diseases. Researched as personality types, connecting personality and health by Professor Hans Eysenck with questionable data using the same arguments as we see with all the CBT trials now coming out. The cot death scandal, shaking baby and Roy Meadows Salt and Sugar fiasco. The PACE trial and those that have published, but not robust peer reviewed papers, need to understand that their behavior will not be tolerated and do not fit into the NHS constitution of the 7 core principles.
The inaction of NICE to take down bad behavior by the Psychological lobbyists/Activists, is directly or indirectly discriminating against those doctors who do know about post viral ME, the destructiveness of pushing into PEM so deep there is no hope of recovery. The difference between cfs and the other complex conditions that go with infections. You have shut them out for far too long, causing mayhem in the health and social care system by your inaction.
NICE now must first acknowledge the harm and release the signed off guidelines on that understanding. You have been made aware over decades of the issues I have raised. A small minority that has an over big command over NICE have caused a lack of understanding and a way forward.
It
needs to be made clear this will not be tolerated nor allowed to continue as point
6 of the NHS core principles states, “The NHS is accountable to the public,
communities and patients that is serves” and the public and patients have
spoken and demanded change, biomedical research and appropriate treatment which
is in line with the biomedical research already available.
Kind
Regards
On
behalf of those silenced children, young people and their families over the
decades.
Tina
Rodwell
