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Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

Countrygirl

Countrygirl

Senior Member
Messages
5,468
Location
UK
Greg Crowhurst of Stonebird has posted this link below. He decided not to sign the petition and has written the article below in response to NICE. (Only a section is quoted so you will need to open the link.)


http://m7l4gv.xara.hosting/NICE/

NICE Guideline CG53 : a Human Rights issue for people with ME ?
Greg Crowhurst July 2017
“Loyalty to petrified opinion never yet broke a chain or freed a human soul. “Mark TwainNICE's recent decision not to update its hopelessly flawed guideline, CG53, reeks of an institutional psychiatric bias that has blocked medical research and treatment for people with ME for almost half a century, has led to patients taking their own lives out of despair and hopelessness, has led to the breaking up of families, the sectioning in locked mental health wards of the most profoundly ill , an all pervasive, deep set culture of suspicion and denial, that makes any encounter with services hazardous, immensely stressful and dangerous and the severely affected being left for decades to cope, often with no appropriate service whatsoever, or dying, without the medical knowledge they need to help them.Patients are left with no hope, their suffering is indescribable, too many people die without the medical knowledge to save them, other people take their own lives, not because they are mentally ill, but because there is no hope, because psychiatry and the psychosocial paradigm is blocking the medical input, for a physical disease, that should have happened years ago under the NHS.Littered with self-serving psychiatric references, based on “bad science” (Rehmeyer 2016), the NICE Guidelines bolster and serve a multi-million pound fatigue clinic empire that has nothing to offer people with ME other than advice to change their “maladaptive thinking” that they are really ill.The Guideline does nothing to change the perception that ME is a mental illness, in fact it's decision to come off the static list, not for medical reasons, but because of the FITNET CBT/GET Trial , based on “shoddy evidence” (Tuller 2016), must deepen it. If you misinterpret someone with a physical disease as having a mental health issue, if you don’t do the tests that will reveal the muscle dysfunction and the other physical dysfunctions and if services are geared towards a psychiatric diagnosis of wrong illness thought and deconditioning, people will be offered treatment that is inhuman, cruel, inappropriate and ultimately dangerous, because it is in direct denial of their reality. Now, more than ever, patients are ‘‘persons holding rights’’. They have access to a wealth of information not available in previous times, particularly via the internet. (Hough C 2016) Surely CG53 is open to be challenged under the Human Rights Act ?
The Human Rights Act
Since the Second World War there have been many different international human rights agreements; one of the most important human rights agreements is the European Convention on Human Rights, which sets out a number of fundamental human rights. Each right is referred to as a separate ‘Article’ : for example the right to life (Article 2) and the right not to be subjected to torture, inhuman or degrading treatment (Article 3)The Human Rights Act 1998 (HRA) came into force in October 2000. It incorporates the main rights and freedoms set out in the European Convention on Human Rights (ECHR) into UK law. The HRA requires that all public authorities act in a manner which is compatible with the rights set out in the ECHR. If public authorities fail to meet this duty, people who are affected by the breach, may ask the courts for a remedy. Public authorities include central Government, local authorities, NHS Trusts and most providers of public services.NICE claims that it: “ is committed to ensuring that its guideline development process:1. fully meets duties under the Equality Act (2010) to have due regard to the need to eliminate discrimination, foster good relations and advance equality of opportunity in relation to people who share the protected characteristics of age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation, including the public sector equality duty to tackle discrimination and provide equality of opportunity for all
Yet NICE continues to allow psychiatric dominance to hold sway, has not listened to nor seemingly
respected the ME patient voice and experience that says these guidelines are unfit for purpose and always
have been.
2. enables it to meet requirements under the Human Rights Act (1998).According to the British Institute of Human Rights : “The legal duty that applies to most health services under the HRA means that human rights provide another way to challenge poor decision- making by public authorities and for ensuring service users receive the care they are entitled to. In this way human rights provides a language which moves away from need or ethical arguments to one based on rights supported by law.”
Click to expand...
 
C

charles shepherd

Senior Member
Messages
2,239
What a brilliant end to the day - thank you so much to everyone who has signed our petition.

Our 3000 word submission has been sent to NICE and it should be published on the MEA website at some point tomorrow.

I shall also be writing to Sir Andrew Dillon, Chief Executive of NICE, to present the MEA petition and informing him that he cannot just ignore what is a major vote of no confidence in a NICE guideline by the people it is designed to help.

Dr Charles Shepherd - Hon Medical Adviser, MEA
 
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