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A call for a broad-ranging Parliamentary Select-Committee inquiry into UK Government policy on Myalgic Encephalomyelitis (ME)

Announcing the launch of a special Stonebird  page to support the call for an Inquiry into UK ME Policy; it  will provide up to date links and campaign resources :


http://www.stonebird.co.uk/inquiry/index.html

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)

http://www.mecfsforums.com/wiki/What_Is_Already_Known_by_Margaret_Williams

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”

(http://www.meactionuk.org.uk/Wessely_John_Maddox_Award.htm)

 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 
By misrepresentation
Misinterpretation
Neglect ?

Linda

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

http://www.thedailybeast.com/articles/2012/11/02/pay-more-attention-to-chronic-fatigue-syndrome.html

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.” 

http://www.equalityhumanrights.com/about-us/

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 :

http://www.stonebird.co.uk/Human%20Rights.pdf)


Additional References :

The British Institute of Human Rights (2006) Your Rights : a guide for disabled people 
http://www.bihr.org.uk/sites/default/files/bihr_disabled_guide.pdf

Guidance on using and interpreting the   Human Rights Measurement Framework
http://www.equalityhumanrights.com/uploaded_files/humanrights/HRMF/hrmf-chapter-3-4.pdf

Disability Rights UK Factsheet The Human Rights Act 1998 (HRA) 
http://www.disabilityrightsuk.org/f1.htm

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
www.stonebird.co.uk

ME does not equal CFS !

Many thanks to Jill Mclaughlin for her excellent post : ME, CFS, ME/CFS: Importance of accuracy and consistency in terminology, classification and coding,
which provided the inspiration for this poster.

Jill's post is here :
https://www.facebook.com/notes/jill-mclaughlin/me-cfs-mecfs-importance-of-accuracy-and-consistency-in-terminology-classificatio/434901453241557

Prayers


Stonebird has just launched a brand new page- prayers for those who suffer the terrible agony  and injustice of Severe ME :

http://www.stonebird.co.uk/prayer/prayer.html

19


 This  poster is being distributed, good   -  it's excellent - it will hopefully  shock people into the reality of ME.

Yesterday was our 19th Wedding Anniversary, BUT  that pain-scourged , numb, throbbing,  minute by minute excursion through sophisticated  suffering ,  that paralysed, gasping attempt to cope , bears little relationship to the poster...the symptoms listed above  describe  Linda on a miraculously "good" day.

Severe ME, in its depth, scope ,range and magnitude of symptoms ,goes so far beyond the popular image  of "ME", or anyone's experience , that it is wholly  unimaginable, except to those who have it. 
     
My intimate knowledge, such as it is,  of what Linda goes through, bears little relationship to her actual reality - I know am not strong enough to take it on for a second , without going mad. I tinker around at the edges; as , I am afraid, so does this poster. 

It's very, very good - but it does not convey  the  horror . That said, I am not sure I'd do much  better.

Riding the Wave, Still (Part Two)


(Dedicated to Pixi)

Thank you so much to hiddenlives, for this insightful comment on Part One :

"Change is a fundamentally frightening thing, I think. A kind of primal knee-jerk as well as the age-old and ever-with-us struggle with humility; in the case of change, that seems to take the form of the fear of having to admit an entrenched position/way of doing things was wrong."

...it's well known that the Chinese character for change means "dangerous opportunity". Change, as hiddenlives  says  can be   frightening-even dangerous. There are many who feel very strongly, with good reason ,  that the stand  they have taken in Scotland is riddled with danger - as we saw in Part One.


Trouble is, you can become  fixated on the danger , rather than the opportunity !



The key to coping with change , not getting stuck,rather  learning from and reading the signs of the time is your    value base : do  you, as someone with ME, want to be called a "CFS" patient ? Do you value truth, integrity ? 

Steve Jobs famously reflected :

For the past 33 years, I have looked in the mirror every morning and asked myself: 'If today were the last day of my life, would I want to do what I am about to do today?' And whenever the answer has been 'No' for too many days in a row, I know I need to change something. 


Steve Jobs and I were the same age - see what he achieved in his lifetime.


At least I can bear to look at myself and think I've tried - am trying - to make a difference. To me it's crystal clear, people with ME have to take their power back and that begins with telling the psyches where to stick their CFS label.


Like some out of control  Frankenstein, the calculated creation of   "CFS"  has done so much harm, caused so many deaths, led to such endless suffering. 


"No More" , I have cried- for a long time now. Thinking others feel the same way.


Now - here's the thing. It 's lonely  here .


If you try and picture a wave of change - the initial stage of the wave is powerful. Lynch and Kordis in that wonderful book I told you about in Part One, Strategy of the Dolphin - call this bit, "The Flow".


Things are not always idyllic, however our capability for problem solving seems to equal the demands of the challenges presented - those were the days : we even though for example we could take NICE to Court and win ! 


We published reams , we discovered the Internet, we made videos galore; for a while we felt masters of our  universe , so bitingly critical, so right-on, blah, blah, we went , expressing our outrage on the Forums - oh boy, will we make the psyches shake in the boots with our latest post on Local ME.


As if.


They simply shrug it off, poor psyches, "only trying to help"  -in all the papers with tales of how they have been "terrorised" by ME activists .


If the dubious  PACE Trial results can make headlines all over the world .....well is all our "outrage" worth a pile of beans ?


Waves start off powerfully, then they start to lose power - and  momentum -begin to  crash   into a trough.


But wait - HERE is what I am talking about. Up here  on the peak of the wave . Look around you. Where is everyone ? I told you it's lonely.


You would reasonably expect to find a lot of activity at the wave's peak. In fact, according to Lynch and Kordis, the  " crest of the wave is typically about as crowded as a swimming beach in the midst of a wintry blow"-  not very crowed at all. A lot of people have retreated into more familiar waters - like criticising the Scottish initiative,  each other, expressing their outrage, blah, blah....same old, or else, oh look,  there they are- plunging away fatalistically into the trough.


Where are you ?


That's the first question...


In Part Three, I 'll ask you just one more - and you will never look upon fish the same way again !