NICE Guideline CG53 : a Human Rights Issue for people with ME ?
Stonebird
“Loyalty to petrified opinion never yet broke a chain or freed a human soul. “
Mark Twain
NICE'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 and an all pervasive, a 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.
People have no hope, the 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.
Mark Twain
People have no hope, the 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 2016) Surely CG53 is open to be challenged under the Human Rights Act ?
The Human Rights Act
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
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.”
Human rights, however are not just about the law.
The Human Rights Act also influences the way public services are delivered to disabled people. The Disability Discrimination Act (DDA) 2005 , amongst other things, places a duty on public authorities to promote disability equality; it covers both public and private bodies. (The British Institute of Human Rights 2006) The most ill, those patients with Severe and Very Severe ME who cannot go to clinics due to the nature of their illness, are not being equally treated, not by any means. By failing to acknowledge the full range of Severe ME symptoms, particularly paralysis, muscle dysfunction, muscle spasms, noise, light, chemical, motion /movement sensitivity, which lead to isolation and and an inability to engage with the system, NICE are not safeguarding people’s right to medical respect , appropriate input and care.
The rights contained in the Human Rights Act are:
- Article 2: Right to life
- Article 3: Right not to be tortured or treated in an inhuman or degrading way
- Article 4: Right to be free from slavery or forced labour
- Article 5: Right to liberty
- Article 6: Right to a fair trial
- Article 7: Right not to be punished for something which wasn’t against the law at the time
- Article 8: Right to respect for private and family life, home and correspondence
- Article 9: Right to freedom of thought, conscience and religion
- Article 10: Right to freedom of expression
- Article 11: Right to freedom of assembly and association
- Article 12: Right to marry and found a family
- Article 14: Right not be discriminated against in relation to any of the rights contained in the Human Rights Act
- Article 1, Protocol 1: Right to peaceful enjoyment of possessions
- Article 2, Protocol 1: Right to education
- Article 3, Protocol 1: Right to free elections
- Article 1, Protocol 13: Abolition of the death penalty
The failure of NICE to diagnose or respond appropriately to the health problems people with ME actually experience, could be likely to engage Article 2, the Right to life. The degrading experience many ME patients face, of denial of their physical reality, of disbelief that they are seriously ill, of life threatening wrong treatment and misinterpretation, the locking up of people with ME, in psychiatric wards, who do not have a mental illness, being deprived of food and water, the being made to comply with inappropriate psychiatric brain washing interventions, could, presumably, engage Article 3, the Right not to be tortured or treated in an inhuman or degrading way.
Children are particularly in danger here, because they are minors and powerless to stop state intervention. Article 3 imposes a positive obligation on States requiring them to take measures designed to ensure that individuals within their jurisdiction are not subjected to torture or inhuman or degrading treatment, including ill treatment.
Even though for the last 48 years, Myalgic Encephalomyelitis (ME) has been formally classified by the World Health Organisation as a neurological disorder, a group of powerful UK psychiatrists “have denied it exists other than as an aberrant belief; they insist that it is a mental (behavioural) disorder that can be cured by graded exercise and “cognitive re-structuring.” (Williams 2017)
Finding a doctor, these days, who is willing to take the illness seriously and make appropriate recommendations remains extremely difficult and continues to cause great distress and financial hardship. (Chainey 2017)
How can you be free if you are constantly misinterpreted and maligned for an illness where biomedical progress and interpretation is blocked by NICE ?
How can you be free if you are consigned to your home for decades because your illness is misinterpreted, denied and never treated, leaving you with tormenting, profoundly disabling symptoms, which are not adequately investigated nor clinically respected?
This could engage Article 5: the Right to liberty. Parents being accused of child abuse (Wheeler 2015,) kids being removed from families, all because of ongoing psychiatric negation, (Colby 2014) could engage Article 8: the Right to respect for private and family life, home and correspondence. For decades people with ME have been accused by the psychiatric lobby of “unhelpful beliefs”, that they are really ill; “It’s a rare GP who will trust a patient’s knowledge.” (Chainey 2017).
The denial of serious biological aberrations is exactly the reason why many patients feel that 'the medical profession has given up to them'. (Twisk 2010) Under Article 9, the Right to freedom of thought, everyone has the right to freedom of thought, conscience and religion (Murdoch 2012); but this, of course, raises the question (cf. Letsas 2012) : to what extent should the psychiatric lobby be allowed to propagate state institutionalized abuse ; the Psychosocial model of ME , which sets out change the ‘wrong thought’ that one is ill, when actually one is physically desperately ill and one’s illness is deliberately ignored and under investigated. It also sets out to to influence people’s perception of you as your thoughts not being valid and therefore not equal to theirs.
This has had profound and continuing repercussions “on innumerable very sick people and their equally desperate families.There is no appropriate support or medical provision for people with ME in the NHS. Policy-makers appear completely unaware of (or are forbidden to consider) the significant available evidence of the biomedical underpinnings of the disorder.” (Williams 2017)
On Feb 9th 2017, the Royal College of Psychiatrists and the Royal College of General Practitioners published "Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning" (Joint Commissioning Panel for Mental Health), misinforming Commissioners that Myalgic Encephalomyelitis is a "Functional Somatic Disorder", in other words a mental disorder. This is despite the fact that ME was recognised as an organic disease by the Department of Health (Hansard: 27th November 1987:353), in November 1987.
The Chief Medical Officer’s report of 2002 described ME as a "genuine illness" which,"imposes a substantial burden on the health of the UK population." On 14th Jan 2013 the Minister for Care, Norman Lamb wrote to me confirming that "ME is genuine and disabling, is associated with altered neural functioning and causes significant and in some cases profound disability".
In March 2017 NICE wrote to me confirming that they do not list ME as a functional somatic disorder and in April 2017 the Department of Health wrote to me confirming that " This Government accepts the World Health Organization’s classification of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) as a neurological condition of unknown origin and that health and social care professionals should manage it as such. "
Despite this, NICE’s Surveillance Proposal Consultation Document, is dominated by psychiatric ideology , resulting in both an inequality of opportunity to get fair treatment and respect as well as possible Human Rights Act Violations:
The Surveillance Proposal
It does not recognise that people primarily with fatigue as in Chronic Fatigue have a very different illness to people with WHO G93.3.10.6 neurological Myalgic Encephalomyelitis, which manifests in severe multi-system dysfunction. (Carruthers et al 2011). There is a totally separate WHO category , F48.0 , for mental health Chronic fatigue; the two should never have been put together as one in the first place!
It does not acknowledge the need to safeguard people with ME from wrong treatment regimes, especially CBT, GET and Graded Activity management which can absolutely harm people with ME, especially the more severely affected.(Twisk 2010)
There is no acknowledgement that the the Fatigue Clinics, which have been condemned nationally by ME Charities (Grace Charity) are not appropriate and never have been for people who have Myalgic Encephalomyelitis.
The Surveillance Proposal fails to correct the document’s original error, that it did not study the aetiology and pathogenesis of ME, this meant that thousands of papers could not be discussed, which should have been included, as part of the process. Almost all the UK ME Charities condemned the Guideline as unfit for purpose, when it was published in August 2007: such was the outrage and disgust throughout the ME community at the way that NICE had deliberately ignored so much evidence about ME.
Over twenty renowned ME experts later provided Statements to the Court (Judicial Review of the NICE Guidelines) challenging the validity of the research that NICE used for its Clinical Guidelines.
Despite this, the NICE topic experts still appear to be operating under the false assumption that psychiatry has the right to control and justify its dominance in the field. Until this is rectified there will continue to be abject medical neglect and misinterpretation of people with WHO G93.3.10.3 ME and particularly the most Severely Physically ill.
The Surveillance Proposal conspicuously limits its consideration of the literature to that which supports the psychiatric paradigm of ME and fails to take account of the available published biomedical evidence about ME.
The Surveillance Proposal is extraordinarily relaxed about allowing the widest possible illness definition to continue to be used, which ridiculously only requires fatigue as a main symptom.
How, then, will anyone ever escape the generalised, psychiatrised, vague Chronic Fatigue Syndrome Label (CFS) that helps no one? ME does not exist on a continuum with Chronic Fatigue or CFS, as NICE implies, any more than Cancer , or Multiple Sclerosis does.
ME is a neurological disease, yet the heavily discredited PACE and FINE trials, upon which NICE bases its guideline, exclude neurological symptoms, do not study people with ME, yet still they are being used to justify the ongoing psychosocial treatment of ME.
The PACE Trial lead investigator even admitted that“The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME”. (Hooper 2011). Ignoring the physical aspects of a disease in favour of a biased psychiatric approach would seem to be a clear breech of Article 14, the right not be discriminated against.
Under the CFS label there are countless daily cases of psychosocial abuse and needless suffering to ME patients; there is no reasonable logic to this neglect of ME patients. This article has stressed that all UK legislation should be ‘human rights compliant’, meaning it should be designed and applied in a way that respects, protects and fulfils our human rights. Surely that means protecting our right to appropriate medical care ?
There is a desperate need to emphasise that people with ME in the UK have the same human rights as everyone else; and that they are entitled to a proper medical service, appropriate to their physical health needs and biomedical recognition for their devastating Neurological Disease.
References :
Chainey N (2017) Yet more research shows chronic fatigue syndrome is real. When will health services catch up? https://www.theguardian.com/commentisfree/2017/mar/21/yet-more-research-shows-chronic-fatigue-syndrome-is-real-when-will-health-services-catch-up
Carruthers et al (2011) Myalgic Encephalomyelitis: International Consensus Criteria, Journal of Internal Medicine, 20 July 2011 http://www.meassociation.org.uk/2011/07/myalgic-encephalomyelitis-international-consensus-criteria-journal-of-internal-medicine-20-july-2011/
Colby J (2014) False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME) http://www.meassociation.org.uk/wp-content/uploads/colby_j.pdf
Hough C 2016 Patient power: The duty to explain post Montgomery and the statutory duty of candour,Clinical Risk 2016, Vol. 22(1–2) 6–11 http://journals.sagepub.com/doi/pdf/10.1177/1356262216654039
Letsas G (2012) , ‘Redfearn v UK: Even Racists Have the Right to Freedom of Thought’, UK Const. L. Blog (13th November 2012) (available at http://ukconstitutionallaw.org).
Murdoch J (2012) Protecting the right to freedom of thought, conscience and religion under the European Convention on Human
Rights, Council of Europe, https://rm.coe.int/168007ff58
NICE How we develop NICE guidelines
https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-guidelines/how-we-develop-nice-guidelines
NICE (2017) Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) NICE guideline CG53 – 10-year surveillance review /www.nice.org.uk/guidance/CG53/documents/surveillance-review-proposal
https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-guidelines/how-we-develop-nice-guidelines
NICE (2017) Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) NICE guideline CG53 – 10-year surveillance review /www.nice.org.uk/guidance/CG53/documents/surveillance-review-proposal
Rehmeyer J (2016) Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
The British Institute of Human Rights (2006) Your Rights : a guide for disabled people
The British Institute of Human Rights Mental Health Advocacy and Human Rights: Your Guide
https://www.bihr.org.uk/mental-health-advocacy-and-human-rights-your-guide
Tuller D (2016) Trial By Error, Continued: A Follow-Up Post on FITNET-NHS http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/
Twisk F (2010) CBT/GET is ineffective and potentially harmful. ME/CFS patients seem to die considerably younger. http://www.bmj.com/rapid-response/2011/11/02/cbtget-ineffective-and-potentially-harmful-mecfs-patients-seem-die-conside
Wheeler C, M.E. parents fury at child abuse claims | Sunday Express | 21 June 2015 http://www.meassociation.org.uk/2015/06/m-e-parents-fury-at-child-abuse-claims-sunday-express-21-june-2015/
Williams M (2017)THE POWER OF PROPAGANDA ? http://www.margaretwilliams.me/2017/power-of-propaganda.pdf
Greg Crowhurst © July 2017
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