CFS/ME NICE GUIDELINES JUDICIAL REVIEW: Update 3

“Monday Update. As at 06.43 am UK local time, Monday 29 October 2007, the Fighting Fund total is now £7,598. We are nearly halfway to reaching our target and we have seven days left to achieve it.”  Jane Bryant, The ONE CLICK Group

LEGAL APPEAL – JUDICIAL REVIEW: CFS/ME NICE GUIDELINES

The ONE CLICK Group

NICE WEDNESBURY UNREASONABLE

The One Click Group launches the Legal Fighting Fund to challenge the CFS/ME NICE Guidelines in Britain by Judicial Review
What It Is: Judicial Review – CFS/ME NICE Guidelines
Who Will Conduct It: Saunders Solicitors LLP
What It Will Cost: Approximately £20,000
Funds Due In: 5 November 2007
Court Application File Date: 22 November 2007

* See NICE Guidelines – Judicial Review Action legal briefing
* See Judicial Review – Legal Appeal
* See Legal Appeal Instructions

For full story go to

The ONE CLICK Group

Inquiry into NICE: final hearing, 8 November 2007

From The ME Association’s News page

Inquiry into NICE: final hearing

The Health Select Committee of the House of Commons will hold its final day of evidence in its inquiry into the National Institute for Health and Clinical Excellence (NICE) on Thursday, November 8.

The witnesses will be:

10am Professor Sir Michael Rawlins (Chair) and Andrew Dillon (Chief Executive), from NICE

11.15am Dawn Primarolo MP, Minister of State for Public Health, and Department of Health officials.

The hearing will take place in the Wilson Room, Portcullis House, Westminster,

Members of the public will be admitted on a first come, first served basis. There is no system for the prior reservation of seats in the committee rooms at Portcullis House. The committee has issued a public notice of the hearing which advises that it is best to allow 20 minutes to pass through security checks into the building.

Committee rooms and timings are subject to change.

Members of the Health Select Committee: Rt Hon Kevin Barron MP (Chairman) [L], Charlotte Atkins MP [L], Ronnie Campbell MP [L], Jim Dowd MP [L], Sandra Gidley MP [LD], Dr Doug Naysmith MP [L], Mike Penning MP [C], Mr Lee Scott MP [C], Dr Howard Stoate MP [L], Robert Syms MP [C], Dr Richard Taylor MP [IND]*.

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*ME agenda note: Dr Richard Taylor, MP was Vice-chair of the GSRME.

CFS/ME NICE GUIDELINES JUDICIAL REVIEW: Update 2

“Thursday Update. As at 11.30 am UK local time, Thursday 25 October 2007, the Fighting Fund total is now £7,051. We are nearly halfway to reaching our target. Many patients are so ill and have perforce lost their jobs that they are only able to contribute £10. Some individuals and organisations are thankfully in a position to be far more generous and have been. This sum total so far represents a considerable achievement by all. Thank you!” Jane Bryant, The ONE CLICK Group

 LEGAL APPEAL – JUDICIAL REVIEW: CFS/ME NICE GUIDELINES

The ONE CLICK Group

NICE WEDNESBURY UNREASONABLE

The One Click Group launches the Legal Fighting Fund to challenge the CFS/ME NICE Guidelines in Britain by Judicial Review
What It Is: Judicial Review – CFS/ME NICE Guidelines
Who Will Conduct It: Saunders Solicitors LLP
What It Will Cost: Approximately £20,000
Funds Due In: 5 November 2007
Court Application File Date: 22 November 2007

* See NICE Guidelines – Judicial Review Action legal briefing
* See Judicial Review – Legal Appeal
* See Legal Appeal Instructions

For full story go to

The ONE CLICK Group

Major ME broadcasting event on BBC Radio (scheduled for early November)

From the ME Association’s news page

Major ME broadcasting event on BBC Radio

ME will receive special treatment on BBC Radio 4 at the beginning of November. The “You and Yours” programme will be running a seven-part series, beginning on November 2.

Provisional running order

Friday November 2: celebrity interview with Shirley Conran, and announcement about their mini-series the following week. Possibly introduction of a musical leitmotif for the series, involving originally composed music by a PwME,

Monday, November 5: A Guy Fawkes Day discussion on why ME produces such fireworks inn conversation. Professor Peter White v Dr William Weir, with Ondine Upton, former chair of AfME.

Nov 6: Interviews with two sufferers: a severely ill lady from Oxfordshire, and someone who is progressing to some form of recovery

Nov 7: Cognitive Behavioural Therapy: Professor Trudie Chalder v. Dr Charles Shepherd (plus interviews with with PWME who have tried CBT, but decided it didn’t work for them).

Nov 8: Their ‘alternative and complementary” approaches day. The ME Association has suggested look at the Bowen Technique (Cassandra Dry, from Kent), homeopathy (Dr Susie Rockwell, from Hove, East Sussex); meditation (Sue Rawnsley – she’s also a Reiki master), Qi Gong (Dario Gerchi, from Bruton, Somerset), Yoga for people with ME (Angela Stevens, from Woodhurst, East Sussex), Western Herbal Medicine (Jo Dunbar, Claygate, Surrey). Recorded interviews with the therapists, then studio discussion about the therapies by “experts”, as yet undefined.

Nov 9: Research advances (discussion with people working in the field).

Monday, Nov 12: They are considering a wrap-it-up item the following Monday, which presumably will include feedback from listeners.

The ME Association has also contributed to the production of a BBC fact sheet to go with the series.

NICE: GIGA (Garbage-In, Garbage-out)?: Margaret Williams, 24 October 2007

NICE: GIGA (GARBAGE-IN, GARBAGE-OUT)?

Margaret Williams

24th October 2007

The ME community may be interested in the following quotations about the National Institute for Health and Clinical Excellence (NICE); they are taken from the chapter titled “The new management of scientific knowledge: a change in direction with profound implications” by Professor Bruce D Charlton MD from the Centre for Health Services Research at St Bartholomew’s Hospital, London, contained in the book “NICE, CHI and the NHS reforms: enabling excellence or imposing control?” edited by A Miles, JR Hampton and B Hurwitz (Aesculapius Medical Press, London, 2000).

This chapter discusses NICE, CHI (the Commission for Health Improvement, which worked in collusion with NICE but which ceased existence in 2004 and became The Healthcare Commission – an “independent” watchdog for healthcare, now The Commission for Healthcare Audit and Inspection, which in common parlance is a team of hit-men whose job is to ensure conformity with the NICE guidelines), the “sausage-machine” policy of the NHS and the managerial take-over of clinical practice. It has a particular resonance for people with ME/CFS.

The quotations are not all in chronological order as they appear in the chapter.

“The stage is set for clinical science to be steamrollered by the demands of power politics”.

“NICE is not about science, it is about government and managers attaining the statutory power to control doctors”.

“The supposed benefits of NICE do not stand up to a moment’s consideration. NICE and CHI are organised in the form of a statutory arm of the government bureaucracy, as special health authorities with powers intended to influence the clinical practice of doctors and other health workers”.

“Data input is selective, analysis is selective, and the results are selective. The watchword is GIGA – ‘garbage-in, garbage-out’. Conclusions cannot be stronger than the validity of the database from which they were generated”.

“NICE is almost the opposite of science because it reverses the relationship between theory and clinical experience. NICE seeks not to explain, but to fabricate excuses for the centralised control of medical practice”.

“The credibility of NICE depends upon the claim that NICE guidelines will be objectively valid (i.e.) based on appropriate evidence, properly interpreted, rationally argued, and intellectually compelling. If NICE guidelines are seen to be partisan, irrational, scientifically unconvincing or politically-driven, then NICE guidelines will amount to little more than government propaganda backed up with a big stick”.

“NICE advertises itself as the application of rational and scientific management to medical practice. The claimed intellectual credibility of NICE derives from a raft of data-driven and statistically-based academic disciplines which have become dominant in the past decade. These include Epidemiology, Evidence-Based Medicine, the Cochrane Collaboration and related areas concerning ‘clinical effectiveness’, ‘meta-analysis’, ‘guidelines’ and so on. All of these have been created, sustained and directed largely by Department of Health funding. In return for this funding, the practitioners of these arts have performed a managerial role – aspiring to the function of commissars for government and NHS management. There is no reason to assume that NICE will perform any better than any other government bureaucracy when it comes to providing objective, rational and independent guidance”.

“For NICE guidelines to be credible, it ought to be clear that optimal clinical practice is known, and can be clearly stated in the form of usable guidelines. Presumably, this implies that randomised, controlled trials (RCTs) are intended to be the main source of evidence for NICE, since it is a commonly held belief among the clinically ignorant and epidemiologically unsophisticated that the RCT is capable of providing precise and unambiguous (‘gold standard’) guidance for clinical practice (reference: any publication from the Evidence-Based Medicine movement or the Cochrane Collaboration). Unfortunately for NICE, RCTs cannot provide precise and unambiguous guidance for clinical practice, since most RCTs are done on unrepresentative populations of heterogeneous subjects employing sub-optimal levels of experimental control”.

“Many bio-statisticians hoped that meta-analysis would provide a method for objective interpretation. But this was a delusion, since an accumulation of inadequate data simply makes a bigger pile of inadequate data”.

“It is embarrassing for those who understand statistics and clinical medicine to contemplate the enthusiasm of (the) protagonists (of meta-analysis) and profoundly worrying that their armour-plated credulity has become the orthodoxy among politicians and managers”.

“The failure of RCTs and meta-analysis to deliver objective and authoritative guidelines means that NICE recommendations will inevitably suffer from the same lack of intellectual credibility that affects many other guidelines emanating from the Department of Health sponsored guidelines industry (Centre for Reviews and Dissemination, Cochrane Collaboration etc)”.

“NICE guidelines will differ from existing sources of medical advice only because they will be mandatory, and enforced on doctors by sanctions”.

“NICE and CHI are near the apex of a top-down managerial hierarchy in which the upper echelons audit and control the lower ones. This means that non-practitioners make decisions and enforce those decisions upon practitioners. Power to judge scientific theories in NICE is centralised and concentrated in the hands of the few who give order to be acted upon by the many”.

“NICE re-defines ‘science’ as being whatever is the outcome of its deliberations”.

“Since decisions are in the hands of the few, this decision-making process is readily corrupted by political expediency or self-interest”.

“NICE is designed to dominate professionals, not to assist them”.

“This politicisation of the NHS was to be driven from above by radical ideas emanating from the cabinet and its policy think-tanks, and implemented by a management empowered to impose these upon an unwilling professional workforce, (resulting) in the transfer of power from health professionals to general managers”.

“The superficial aspects of this dominance of policy compose the whole bogus rhetoric of mission statements, aims and objectives, targets, charters, standards, guidelines, protocols and public relations. Clinicians are kept busier then ever on ‘implementing’ reforms. The chaos game is one that only managers and politicians can thrive on: professionals and patients are the losers”.

” ‘Infostat’ is my term for the use of information technology and statistics to support managerial decision-making. Infostat techniques aggrandize the significance of the larger database and denigrate the value of personal contact with patients (too ‘anecdotal’ and ‘subjective’). Increasingly, clinical training, experience and patient contact are derided as subjective, and marginalized as anecdotal compared with the awesome weight of data. Whatever is not statistically processed is seen as inadmissible evidence. And politicians and management have – through Department of Health funding – ensured that they have a virtual monopoly of such evidence”.

“This means that quantity of data is much more important than its quality. Indeed, politicians and managers are almost indifferent to the real quality of the data. Academic criticisms of validity are water off a duck’s back, since they are entirely subsidiary to the managerial process”.

“In this game, statistics always trump direct personal experience to the point that people are no longer supposed to act upon the evidence of their senses”.

“The political pressures and managerial judgments are shielded from critique by an elaborate façade of pseudo-evidence”.

“The official propaganda for NICE denies the massive role of arbitrary opinion and interest involved”.

“The doctor is not allowed to take notice of individual patients’ needs, wants and preferences – the doctor can only stick to procedure. The medical profession is too strong. The only sensible solution is to destroy the medical profession and force doctors to follow instructions. Doctors’ role in the health service is not to exercise autonomous judgment: the doctors’ role is simply to obey guidelines. The nature of clinical service is no longer to be under the control of doctors, never mind patients, but will be decided by politicians and managers”.

“The ideal of Infostat is not to out-argue opposing viewpoints by scientific evidence, but to bury them under a sheer mass of evidence”.

“In contrast to the ethic of honesty, NICE already exemplifies a fundamental evasiveness by conflating effectiveness with cost-effectiveness”.

“NICE is a diabolical engine that manufactures decisions when fed data. These decisions are legitmated by burying the opposition under a heap of misleading information and obfuscation”.

“Top-down regulation is a branch of management theory, not of human biology. Political expediency will corrupt science”.

“NICE is just part of the NHS sausage machine, a mechanism which exists to support policy decisions and which has little incentive to seek the truth. The policy sausage machine was designed and paid for by politicians and it will be influenced primarily by politicians”.

“Whatever the phony mission statements about ‘clinical excellence’ and ‘health improvement’, the fact is that NICE is a government funded bureaucracy (and its) recommendations will be enforced on doctors by the CHI inquisitors”.

“Since the real function of NICE is to control the medical workforce, as long as there are recommendations to be enforced, then NICE will be serving its political purpose”.

For the full paper, see http://www.hedweb.com/bgcharlton/cargocult.html

Two Australian bloggers

Two Australian bloggers

Thank you, Blue Coffee Mug for adding ME agenda to your Blogroll

Blue Coffee Mug

http://bluecoffeemug.wordpress.com/

Greenwords

http://greenwordsgrowing.blogspot.com/

House of Commons: Written answers: 19 October 2007

House of Commons: Written answers: 19 October 2007

Hansard 19 October

Written answers: Chronic Fatigue Syndrome: Health Services

Sir Peter Soulsby

To ask the Secretary of State for Health (1) what plans his Department has for further medical and scientific research into the cause or causes of chronic fatigue syndrome/myalgic encephalomyelitis; [157527] (2) what medical research his Department has funded into the cause or causes of chronic fatigue syndrome/myalgic encephalomyelitis since 1997. [157528]

Dawn Primarolo

I refer the hon. Member to the reply I gave my hon. Friend the Member for Sunderland, North (Bill Etherington) on 3 July 2007, Official Report, column 1009W.

2007 Parliamentary copyright

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Hansard 19 October

Written answers: Chronic Fatigue Syndrome: Health Services

Sir Peter Soulsby

To ask the Secretary of State for Health what plans his Department has to improve specialist services for chronic fatigue syndrome/myalgic encephalomyelitis. [157526]

Ann Keen

We have no specific plans to improve specialist services for those living with chronic fatigue syndrome/myalgic encephalomyelitis.

2007 Parliamentary copyright

Questions concerning closure of The MEACH Trust

Closure of The MEACH Trust

In view of questions being asked, and the absence of any public statement, The ME Association asked the Charity Commission (CC) a number of questions last week regarding the decision to dissolve the MEACH TRUST charity on 21 August 2007.

These were:

1 Why has the charity ceased to function?

The CC were unable to clarify and pointed out that they generally do not make enquiries when a charity decides to dissolve.

2 What has happened to the money (around £88,000 over five years) that was being raised to build a care home?

The CC was unable to provide an answer.

3 What has happened to the remaining assets?

Any remaining assets have been donated to the 25% Group. [The 25% ME Group for severe sufferers]

Dr Charles Shepherd

The ME Association

24 October 2007

 

CFS/ME NICE GUIDELINES JUDICIAL REVIEW: Update 1

Please Network This Flyer  CFS/ME NICE GUIDELINES JUDICIAL REVIEW
NICE WEDNESBURY UNREASONABLE

* The CFS/ME NICE Guidelines have been produced by a process of
documented unethical political and medical manipulation of due process.
* Please help us to challenge the atrocious actions of the National
Institute for Health and Clinical Excellence (NICE) and the psychiatric lobby through the courts

What It Is: Judicial Review – CFS/ME NICE Guidelines

Who Will Conduct It: Saunders Solicitors LLP

What It Will Cost: Approximately £20,000

Pledges Due In: 5 November 2007
Court Application File Date: 22 November 2007

* See How To Donate – Legal Appeal Instructions
(http://tinyurl.com/39cgjm)
* See Judicial Review – Legal Appeal Information
(http://tinyurl.com/34exk8)
* See NICE Guidelines – Judicial Review Legal Briefing
(http://tinyurl.com/357o37)

Email your financial pledge to One Click and Saunders Solicitors LLP. Our legal fundraising target is eminently reasonable and entirely possible when addressed by the collective. It is that simple. We look forward to receiving your tangible support for this legal campaign.

FORCE NICE TO DO ITS DUTY TO ME/CFS LABELLED PATIENTS THROUGH THE COURTS NOW!

HOW TO DONATE

1. Legal Appeal – NICE Judicial Review

Update. As at 09.26 am UK local time, Wednesday 24 October 2007, the Fighting Fund total is now £6,581. We are over a quarter of the way to reaching our target. Many patients are so ill and have perforce lost their jobs that they are only able to contribute £10. Some individuals and organisations are thankfully in a position to be far more generous and have been. This sum total so far represents a considerable achievement by all. Thank you!

We would be very grateful if the Legal Appeal Flyer (http://tinyurl.com/yt4zgd) could be posted on websites around the world.

Documents that you will need to inform your decision to help are:

Jane Bryant – Legal Appeal Personal Statement

Judicial Review – Legal Appeal Information

The One Click Group Response – NICE Guidelines

NICE Guidelines – Judicial Review Legal Briefing

HOW TO DONATE

READ THE NEWS ON ONE CLICK

Unum Chief Medical Officer’s Annual Report 2006

Unum Chief Medical Officer’s Annual Report 2006

The PDF version of the Unum Annual Report 2006 can be downloaded here

An html version of the Unum Annual Report 2006 can be accessed here

Unum Chief Medical Officer’s Report 2006: Rehabilitation – Keeping People in work

Index to sections:

Introduction – Professor Michael O’Donnell, Chief Medical Officer, UnumProvident
Principles of Rehabilitation for Common Health Problems – Professors Gordon Waddell and Kim Burton
Rehabilitation – what works and what doesn’t – Joy Reymond, Head of Rehabilitation Services, UnumProvident
Escaping from incapacity – a biopsychosocial approach to overcoming health-related unemployment – Dr Bob Grove
Why managing sickness absence and return to work practices is part of HSE’s strategy for improving workplace health – Keith Wiley

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