A human rights based approach to people with ME.
The situation in the UK is a travesty of both medical science and human rights; things have become so serious and patients with ME/CFS in the UK are so neglected – indeed, they are treated with undisguised contempt and are abused by those working in the very system that is designed to support them…
Margaret Williams (2012)
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 (Aticle 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 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.
There are two particularly relevant areas of the HRA in relation to ME - Articles 2 and 3.
Although the US Food and Drug Administration (FDA) has recently re-categorised ME under "Immune Diseases", describing it as a "serious or life threatening illness" on a par with cancer and heart failure, and the Primer for Clinical Practitioners published in September 2012 sets out evidence of multi-system disruption consistent with an autoimmune inflammatory disease, currently health provision for people with ME in the UK is virtually non-existent .
Few GPs and paediatricians have sufficient knowledge of the illness. Most of the professional literature ME suggests that ME is a functional somatic syndrome and does not recognise the WHO definition of ME as neurological.
This has caused untold damage and distress to countless people with ME over the years , who have been abandoned by the Health Service, left to cope, on their own, often for decades on end , with no tests, treatment or hope - as a result of a deliberate cover up, according to Professor Hooper (2012) : “ So great is the extent of the refusal by successive UK Governments and their agencies of State (especially the Department for Work and Pensions, with which the PHI insurance industry has been deeply involved since 1993) to engage with the sound biomedical science which underpins ME that comparisons are now being drawn with the Hillsborough disaster “cover-up” by the Police”
It is unlawful for public authorities to act in a manner which is incompatible with the Human Rights Act - which is why the failure of health services to diagnose, or respond appropriately to the health problems people with ME experience, could be likely to engage Article 2, the Right to life.
The neglect and abuse of people with ME - “legalised medical torture” -according to Jodi Bassett (http://www.hfme.org/meandabuse.htm) , could also amount to a violation of Article 3 which 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.
Inhuman treatment - the locking up of people with ME, who do not have a mental illness , in psychiatric wards, being deprived of food and water, the being made to comply with inappropriate psychiatric brain washing interventions, could well invoke Article 3.
As Professor Hooper (2012) emphasises the fact that “people with ME have been and continue to be intimidated and abused both mentally and physically by the imposition of harmful interventions cannot be in dispute: the evidence is overwhelming and patients’ testimonies are plentiful. “
People with ME :
have to endure condescension and dismissal by neurologists , doctors, nurses , social workers, not interested in their neurological symptoms.
have to endure inappropriate therapeutic techniques being offered ,for their serious physical disease, as "treatments".
have to endure the promotion of a biopsychosocial approach to their disease, when it is not a mental health illness.
have to endure a complete lack of biomedical ME clinics and a dearth of biomedical ME clinicians .
have to endure no government backing for accurately identified, clearly and adequately defined ,physically focused, ME research.
have to endure lobbyists and psychiatrists who have vested interests in insurance companies, being allowed to be advisors to the DWP regarding guidance in their illness.
have to endure psychiatrists being allowed to inaccurately define their disease with too few symptoms and promote a vague symptom of fatigue that is not the primary dysfunction in ME.
have to endure the psychiatric lobby getting away with changing the name of their disease from" ME" to "CFS" ,to deliberately ensure a wrong focus.
have to endure inappropriate therapeutic techniques being promoted by governments, when they are not wanted by people with ME as they make them more ill and disabled .
have to endure the vast array of unending ME symptoms and the fact that there are no drugs or appropriate biomedical treatments to alleviate them , because the Government has wasted millions of pounds upon pointless psychiatric research .
have to endure the isolation caused by people , both medical, official and in society , including friends and families , who do not understand that ME is a serious and severely disabling physical illness .
have to endure living in fear that they will not be awarded or keep their benefits .
have to endure knowing that they need a proper diagnosis and medical assessment but if their GP or clinician or benefit agency doctor is psychiatrically oriented , they are simply not likely to get the right help and acknowledgment that they need .
( from : Crowhurst G (2012) How To Care for Someone with Severe Myalgic Encephalomyelitis, Stonebird)
A person with Severe ME describes the horror :
How can we continue to bear such wrong in the world ?
Wrongness that destroys truth
That evades healing
That persecutes the vulnerable
That punishes the most ill.
Surely we cannot be frozen out of society for ever
As Paul Ryan (2012) summarises : The history of the illnes (ME) ..is long on pain and tragedy. That tragedy has been measured in millions of lives barely lived, millions in misappropriated funds and, in some cases, horrific and inhumane treatment of patients
Yet the psychiatrist’s relentless crude yet effective campaign to deny the medical truth of ME continues apace. And they continue to go from strength to strength; it is a disgrace that twelve years after the introduction of the Human Rights Act that there is such 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 and biomedical recognition for their devastating Neurological Disease.
A human rights based approach to people with ME
The practical application of human rights principles to the treatment of people with ME means promoting a long overdue culture of respect , this will surely involve the Equality and Human Rights Commission , who have a “statutory remit to promote and monitor human rights; and to protect, enforce and promote equality across the nine "protected" grounds - age, disability, gender, race, religion and belief, pregnancy and maternity, marriage and civil partnership, sexual orientation and gender reassignment.”
A “human rights based approach” to ME is urgently required, one that provides practical guidance for public authorities on the effective implementation of their duties to this vulnerable , neglected and abused group, not just under the Human Rights Act, but also in relation to the provisions of the Disability Discrimination Act (as amended), including the Disability Equality Duty and the UN Disability Rights Convention.
The Human Rights Act provides ‘a legal framework for service providers to abide by and empower service users to demand that they are treated with respect for their dignity’. ( Eighteenth Report of Session 2006-07, The Human Rights of Older People in Healthcare, HL Paper 156-I, HC 378-I, para 93) .
The Human Rights Act empowers users of public services who may be placed in situations where they are vulnerable to abuse. These conclusions apply with great force to people with ME.
(This article is also available to download as a PDF from Stonebird :
Additional References :
The British Institute of Human Rights (2006) Your Rights : a guide for disabled people
Guidance on using and interpreting the Human Rights Measurement Framework
Disability Rights UK Factsheet The Human Rights Act 1998 (HRA)
House of Lords , House of Commons Joint Committee on Human Rights A Life Like Any Other? Human Rights of Adults with Learning Disabilities Seventh Report of Session 2007–08 Volume I http://www.publications.parliament.uk/pa/jt200708/jtselect/jtrights/40/40i.pdf
Greg Crowhurst 23/11/2012