Legal Countdown to Judicial Review CFS / ME NICE Guidelines

39 DAYS. NO ANSWER. COVER UP.

What has NICE done with the ME/CFS Stakeholder biomedical evidence?
Why does NICE CEO Andrew Dillon refuse to publish?
Would you like answers from NICE?

* Dillon Exposed – CFS/ME NICE Guidelines
http://tinyurl.com/2tayz5
* CFS/ME NICE Guidelines – Legal Action Explored
http://tinyurl.com/29y6df
* One Click Response – NICE Guidelines
http://tinyurl.com/ygweub
Email NICE CEO Andrew Dillon at: Andrew.Dillon@nice.org.uk
[Andrew.Dillon(at)nice.org.u]
Telephone NICE CEO Andrew Dillon:
Direct Line +44(0)20 7067 5825.
Email NICE Chairman Michael Rawlins at: Michael.Rawlins@nice.org.uk
[Michael.Rawlins(at)nice.org.uk]
Contact these men. Make them do their legal duty to patients now!

***************************************

Legal Countdown To Judicial Review
CFS/ME NICE Guidelines
http://tinyurl.com/2j6z4g

Introduction

Due to the illegal malfeasance of the National Institute for Health and Clinical Excellence (NICE) over the production of the CFS/ME NICE Guidelines (http://tinyurl.com/ysxa8v) in August2007 and the current refusal of its CEO Andrew Dillon to abide by the NICE regulations, One Click initiates today the NICE Legal Countdown.

We will be publishing this Legal Countdown Header on material produced by the One Click website daily until NICE provides the information that it is its duty to do. NICE is a public body and it will be held accountable to its Stakeholders and the wider patient population in Britain.

Background

The One Click Group has been a Registered Stakeholder on the development of the CFS/ME NICE Guidelines for the last two and a half years. Please refer to the dedicated NICE Section of this website(http://tinyurl.com/yjq3hu ).

All the biomedical evidence on ME/CFS produced by Stakeholder One Click to inform the production of these Guidelines has gone unacknowledged, unrecorded and unpublished. NICE has contravened its very own regulations and has failed to act throughout in a collaborative and transparent manner as is laid out in its very own regulations.

Timeline

On the 22 August 2007 the CFS/ME NICE Guidelines were published and castigated by the majority of patients as unfit for purpose.
See the Full Version (http://tinyurl.com/ysxa8v )and Short Version (http://tinyurl.com/ysetnf ).

Simultaneous to the Guidelines being published 22 August 2007, selected Stakeholder comments on the development of these Guidelines were also published by NICE.

The biomedical evidence produced by Stakeholder One Click in its document The One Click Group Response – CFS/ME Draft NICE Guidelines (http://tinyurl.com/ygweub ) that provides the biomedical evidence over ME/CFS and that proves beyond doubt that the these Guidelines were produced by a documented process of unethical political and medical manipulation of due process was conspicuous by its absence.

On that date, we contacted NICE CEO Andrew Dillon and legitimately legally demanded that this document that NICE has had in its possession for over ten months be published by NICE.

Dillon immediately reached for his lawyers (http://tinyurl.com/36wakq) to buy himself time by claiming that this evidenced Stakeholder document was defamatory, that the patient testimonies contained therein would have to be obliterated by anonymisation and that the references and quotations contained in this document were unable to be independently verified. Since this document had been extensively legally checked by us prior to publication, this provided all on One Click with considerable amusement. Dillon maintained that subsequent to legal consultation, it was NICE’s intention to publish a bastardised and censored version of this document on the 29 August.

Dillon missed his own deadline. Under pressure from One Click, Dillon wrote to us again (http://tinyurl.com/2wblq5) on 31 August attempting to buy more time with legal advice and claiming that any publication of the One Click document would be taking place by the middle of September.

The incompetent Andrew Dillon then missed his own self-proclaimed second deadline AGAIN and has got his knickers in such a knot that he is currently refusing to answer all correspondence. We now publish the One Click letter in full:

BY ROYAL MAIL RECORDED DELIVERY

26 September 2007

Mr. Andrew Dillon
CEO
NICE
MidCity Place
71 High Holborn
London WC1V 6NA
Dear Mr. Dillon

I am writing to place on the record the concern of ourselves and our solicitors at the NICE refusal to publish The One Click Group Stakeholder Response to the CFS/ME NICE Guidelines document that has been in your possession for the last ten months.

You stated that subsequent to consultation with your solicitors, this document would be published by you by the middle of September. We are now coming up to the end of this month and despite repeated request for publication date information, you are currently refusing to respond to all correspondence.

We require proper answer to the following questions:

1. Would you please advise as to when NICE is planning to publish in full The One Click Group Stakeholder Response document?

2. Would you please advise where the list of declared interests of members of the CFS/ME Guidelines Development Group is located?

3. Would you please advise how much taxpayer’s money NICE is spending on legal bills to prevent full publication of The One Click Group Stakeholder document?

Due to your extended prevarication and refusal to answer recent correspondence, unless we hear from you with immediate effect, we will escalate this matter to The One Click Group website where we will initiate a daily NICE countdown publishing your personal contact details and those of yourcolleagues asking you to provide the information that it is your duty to do. NICE is a public body and it will be held accountable to its Stakeholders and the wider population in Britain.

We look forward to hearing further from you by return.

With best wishes
Jane Bryant
Director
The One Click Group

Cc. Michael Rawlins, NICE Chairman
Dr Mercia Page – Clinical Director, Clinical Practice
Saunders Solicitors LLP

This appalling and illegal NICE malfeasance brings us yet another step closer to legal challenge by Judicial Review.  A Judicial Review is a challenge to the way in which a decision has been made, rather than the rights and wrongs of the conclusion reached. It is not concerned with the conclusions of that process and whether those were ‘right’,  as long as the correct procedures have been followed. The One Click document provides the incontrovertible evidence of how NICE has failed throughout to adopt the correct procedures and this is why NICE CEO Andrew Dillon and his colleagues are so terrified of what we, the ME/CFS community, has produced through formal due process.

We will keep all our readers and contributors informed as this Legal Countdown evolves. What is being done by the  psychiatric lobby via government dictat in the UK will have a domino effect on all ME/CFS labelled and Lyme Borreliosis  patients right around the world.

Please help us to help you.

The One Click Group

***************************************
LEGAL COUNTDOWN TO JUDICIAL REVIEW CFS/ME NICE GUIDELINES
http://tinyurl.com/2j6z4g

39 DAYS. NO ANSWER. COVER UP.

What has NICE done with the ME/CFS Stakeholder biomedical evidence?
Why does NICE CEO Andrew Dillon refuse to publish?
Would you like answers from NICE?
* Dillon Exposed – CFS/ME NICE Guidelines
http://tinyurl.com/2tayz5
* CFS/ME NICE Guidelines – Legal Action Explored
http://tinyurl.com/29y6df
* One Click Response – NICE Guidelines
http://tinyurl.com/ygweub
Email NICE CEO Andrew Dillon at: Andrew.Dillon@nice.org.uk
[Andrew.Dillon(at)nice.org.uk]
Telephone NICE CEO Andrew Dillon:
Direct Line +44(0)20 7067 5825.
Email NICE Chairman Michael Rawlins at: Michael.Rawlins@nice.org.uk
[Michael.Rawlins(at)nice.org.uk]
Contact these men. Make them do their legal duty to patients now!

This information is available on THE ONE CLICK GROUP website

Guardian: Controversial company hired to get disabled people off benefit

Guardian, Politics

Controversial company hired to get disabled people off benefit

David Hencke, Westminster correspondent
Monday September 24, 2007

An Australian multinational group founded and run by Thérèse Rein, the wife of Kevin Rudd, leader of the opposition Labor Party, plans to become the biggest provider of “welfare to work” programmes for up to a million disabled people in Britain under a resurgent Whitehall privatisation programme pursued by Peter Hain, the work and pensions secretary…

Click for full article

Network ME: Press release: CFS / ME – Not Just a White Illness

Network ME

Press Release

24 September 07

CFS/ME – Not Just a White Illness

Once dismissed as “Yuppie Flu”, chronic fatigue syndrome (CFS) or ME (myalgic encephalomyelitis) is now recognised by the World Health Organisation as a neurological illness, despite there being no accepted cure or universally effective treatment.

The condition is being taken seriously, with the National Institute for Health and Clinical Excellence (NICE) issuing guidelines to GPs and health  professionals that they should acknowledge the reality and impact of the illness  and its symptoms.

An estimated 250,000 people in the UK suffer from ME. It can affect anyone but most commonly strikes people aged 20 40. There is no known cause for this illness but typically sufferers of this illness report that their symptoms began after a viral or bacterial infection, or a period of stress. It is characterised by overwhelming exhaustion of both muscle and mind and malaise accompanied by many other symptoms. The primary indicator is a worsening of symptoms following physical or mental exertion, beyond an individual’s tolerance level.

It can develop slowly, over months or years. Some people do seem to recover from it, though an estimated 25% suffer chronically and are left bedbound or housebound for many years.

Network ME is a registered charity based in Edmonton, North London. The organisation is providing many bespoke services to its clients. Importantly, they are the only ME charity within the UK actively reaching out to Black and Ethnic minority Communities raising awareness of this debilitating illness.

” We have spoken to many ethnic groups within London and were astonished to find that there was very little knowledge on this illness within these communities,” said Mirna Peach, Coordinator of Network ME. “Those who have exhibited symptoms of this condition were unable to access proper care from the GPs, perhaps because of language and cultural barriers. Many experience disbelief from friends and family and are being left feeling isolated with nowhere to turn.”

In an effort to combat this situation, Network ME has developed a series of leaflets and translated these into 8 languages. They have recruited volunteers from specific ethnic backgrounds to provide culturally sensitive services all aimed at raising awareness within community groups and ensuring that there is equal and fair access to the treatments that are available.

“We need to make certain that our clients are being educated on this illness. It is important to let them know that they are not alone and that there is support for them if they  need it. Our volunteers are advocates, doctors and counsellors. Many have strong links with their community and are passionate about tackling health issues that affect them. A report by the BMA (British Medical Association) suggest that people from BME backgrounds face a variety of specific barriers to accessing services, including cultural and language barriers as well as evidence of racist attitudes, practices and procedures that are discriminatory in outcome, if not in intent.

” It is no longer acceptable that these communities should have to receive second class services. By empowering them and giving them an informed voice, we hope to begin closing the health gap so that there is fair and equal treatment for all.”

The focus of this project will now take on a national scope, with Network ME directly contacting many BME groups around the UK.

To find out more information on this illness or to receive an information pack, please contact Mirna Peach on 020 8373 6298, or visit Network ME

Notes to Editors
CFS/ME – Not Just a White Illness
This is a unique project of national significance. Network ME is the only CFS/ME charity actively reaching out to ethnic communities to raise awareness of this illness.

Information packs are available in: Hindi, Punjabi, Somali, French, Arabic, Greek, Turkish, Bengali

National ME Observatory: So, who is on the Steering Group?

National ME Observatory: So, who is on the Steering Group?

In March 2006, AfME received a £500,000 grant from the Big Lottery Research Grants Programme. This considerable sum of money has been used by AfME to establish the National ME Observatory.

The March issue of AfME’s InterAction magazine [Issue 59] carried a full page advertisement inviting applications from people with ME who have “an understanding of research processes” to apply for membership of the Steering Group. The Steering Group is said to comprise Action for ME, clinicians, health and social care professionals and people with ME or their carers. It has been formed to “monitor progress and expenditure, to maintain overall supervision of staff employed on the project, to advise on specific issues including necessary changes of direction, as they arise, to plan dissemination of research findings and to prepare detailed reports for the Big Lottery Fund”.

The duties of lay Steering Group members would involve reading scientific papers, monitoring the project and attending quarterly meetings held on a rotation basis in London, Bristol, York and Norwich. A “buddy scheme” was mentioned in order to facilitate the participation of the severely affected who might have difficulties attending meetings, in person – for AfME were keen, they said, to be inclusive of the severely affected.

Issue 61 of AfME’s InterAction magazine carries an update on this three-year project*.

The first meeting of the Observatory Steering Group was scheduled for 15 June with the next meeting scheduled for September.

Following the June meeting of the Board of Trustees of the ME Association, Dr Charles Shepherd published a Summary of the June Board meeting.

Under the heading,

“MEA FUNDED RESEARCH AND OTHER RESEARCH ISSUES”

Dr Shepherd had written:

“A meeting of the ME Observatory Steering Group took place on the same day. As this clashed with the Board   meeting, the MEA could not, unfortunately, be represented.”

To the best of my knowledge, the ME Association has made no announcement, but it appears from this summary that Dr Charles Shepherd has a seat on the Steering Group of the National Research Observatory.

The InterAction Observatory update article lists the following as having been appointed to the Steering Group:

Alison Collins
Joanna Doherty
Cecilia Finnerty
Philip Johnson
Keith Kahn-Harris
Helen Veale

There is also a Reference Group. The update states that “The Reference Group was put together for two reasons. Firstly, to enable people to comment on papers etc. who, due to the severity of their M.E. are unable to travel to Steering Group meetings. Secondly, because of the overwhelming response received to this project, it gives people who could not be appointed to the Steering Group, a chance to become involved.”

So what happened to the “Buddy Scheme”?

Some further questions:

AfME members have been told that the Steering Group comprises Action for ME, clinicians, health and social care professionals but AfME has failed to disclose to its members just who these individuals and organisations are. Only the names of lay members drawn from the ME patient community, and those applicants who have been shuffled into the Reference Group have been disclosed – apart from one, Ben Brown, who has a seat on both the Management Group and the Reference Group.

1] Have representatives of any other ME/CFS patient organisations been given seats on the Steering Group or the Management Group and if so, which organisations are represented, by whom, and through what process were these seats allocated?

2] Other than any ME patient organisations, what other organisations or individuals (other than those specifically named lay individuals that comprise the Steering and Reference Groups) have been allocated seats on the Steering, Management or any other group or groups that comprise the Observatory Project and through what process were these seats allocated?

3] Why has the ME Association not previously declared Dr Shepherd’s appointment to the Observatory Steering Group?

4] Why has AfME not published a FULL list of the names of all members of the Steering Group, Management Group (including AfME staff and Trustees) and Reference Group and the names of ALL others involved in this Observatory Project, which organisations they represent and their functions within this project.

That is, why have we not been told who the clinicians, health and social care professionals are that are, in effect, the caretakers of this £500,000 of funding?

5] Does AfME intend to disclose a full list of all members of the Steering Group to its members and the wider ME community and when might we anticipate being given this information?

Shades of the AfME/MRC Summit?

The Summit was held in November 2006.  ME agenda obtained the complete list of those participating in this Summit under FOI, in December 2006 because, for a second time, AfME had failed to be transparent about who made up this (revised) list of attendees. In April, this year, AfME invited expressions of interest in reserving copies of the Summit Report; we are still waiting for the Report on a Summit which took place 10 months ago, to be published.

Research Observatory update [extract: InterAction article, Page 14-15, Issue 61, September 2007]

*The M.E. Research Observatory is a collaboration between Action for M.E., the University of East Anglia (UEA), Hull-York Medical School and the London School of Hygiene and Tropical Medicine. The M.E. Observatory Research Team Leader is Dr Malu Drachler.

The Observatory aims to produce and support the development of social and epidemiological research which responds to the needs of the M.E. community. There are 14 researchers involved at the University of East Anglia (UEA), three at Hull-York Medical School and two from the London School of Hygiene and Tropical Medicine. It is hoped that in due course, other representatives of the M.E. community and other universities, independent researchers and stakeholders will take part.

In the next three years, the Observatory will conduct six inter-related research studies funded by the National Lottery through Big Lottery Fund. While there are three university-based research teams working on the Observatory, each one is the lead institution for different studies (as indicated below).

The studies will involve:

. interviews with approximately 30 people who have M.E. about the impact their condition has had on their life and what they most need from health and social services (study led by UEA)

. a videotaped consultation of approximately eight people who have M.E. and an interview with their main health and social care professionals about their views on treating people with M.E. (UEA)

. a pilot of a National Disease Register of confirmed cases of M.E./CFS (Hull)

. a description of the occurrence and severity of the illness (London)

. a questionnaire survey on the factors that have an impact on the quality of life of people with M.E. and their carers (London)

. a review of the literature on the needs of people with M.E. and the services for them in England (UEA).

Altogether, the studies aim to:

contribute to finding out how many people are currently living with M.E.; provide sound information on the impact of M.E. on their lives and the lives of their carers; examine what people living with M.E. need most from health and social services; establish what resources are currently available in England to support them. The information is important to improve planning of appropriate services and resources.

Patient involvement

In his first months in post, Peter Spencer, Action for M.E.’s new CEO, has taken a keen interest in the Research Observatory. He told InterAction:

“I was involved in selecting new members for the Steering Group. It was very important that we follow our own principles and have patient representation at the heart of this important and exciting FAm research initiative. “We had a wealth of talent from which to choose but eventually narrowed the field down. Six people will join the Steering Group. Their profiles are listed below.”

A seventh, Ben Brown, has joined the Management Group to help me oversee our contractual obligations to the Big Lottery Fund. Ben has a wealth of experience in research and project management.

“A number of people who we were not able to take onto the Steering Group, have agreed to form part of a Reference Group. They will pay a key role in helping to review the research which is being done by the three universities.”

Personal profiles
The new members of the Steering Group agreed to supply us with their biographies. What follows are extracts for reasons of space.

Alison Collins: My personal involvement with M.E. began in 2000 when I was diagnosed with the illness after suffering from numerous symptoms including extreme fatigue, throat problems, mobility difficulties and brain fogs. Prior to M.E., I was Sales and Marketing Manager in a biological reagents company distributing US and European products in the UK market. This was often a most demanding role but very interesting as it used my PhD research experience combined with new business skills. Physically, I realise that membership of this steering group will be a challenge however I am determined to participate in something that will be of benefit to myself and fellow M.E. sufferers.

Joanna Doherty: I have had M.E. for about four years. In addition, my sister has suffered from severe M.E. for almost two years. Prior to becoming ill, I was in the middle of a PhD in sensory neuroscience at Oxford (I was finally forced to suspend this indefinitely in early 2006). As well as my interest in science, I was also actively involved in several charities over a number of years, both through (unpaid) managerial positions, such as trustee, and voluntary work with children and vulnerable individuals.

Cecilia Finnerty: M.E. became a part of my life in 1998. Thankfully, I have never been at the severe end of the spectrum: just sufficient to change me from someone who could never sit down to someone who sits down quite a lot actually! I’m interested in complementary therapies – they all seem to advocate a relaxed approach to life – and have qualified as a reflexologist and studied Nutritional Medicine, having found both reflexology and attention to diet helpful in the months following acceptance that M.E. was not going to be a quick process.

Philip Johnson: I am here in the capacity of a carer/buddy – my wife has had M.E. since 2000. She is virtually housebound and leads a very restricted 14 InterAction 61 September 2007 life, though she is recovering slowly now. We have come up against professional ignorance of M.E., suspicion, slow diagnosis, inappropriate advice/medication etc. and experienced the sense of isolation and difficulty in finding competent professionals with the right experience. We had to make judgements about alternative treatments on very little evidence or any hard facts. My background is a BSc (Nottingham) and PhD in Chemistry (Royal Military College of Science). I have research, lecturing and teaching experience. Author of several papers (in proper peer reviewed journals!). I retrained in operational research, joined the permanent Scientific Civil Service and ran research contracts for the Home Office and the Navy as well as conducting internal research as part of a team.

Keith Kahn-Harris: I developed M.E. in 1993, following an infection with the Epstein-Barr virus, but I was not diagnosed until 1996. My health has been up and down in the last 14 years. At times, in particular between 1999 and 2001, I would describe myself as having been 90-95 well. Since a relapse in 2002 I have generally fallen into the category of mild to moderately affected. My wife and I have two young children and I work from home about 50 full-time. After many problems I have organised my life so as to be able to deal with my various commitments without relapsing. I am a sociologist by training. Since completing my undergraduate degree in 1994 I have completed an MA and a PhD in sociology. I have contributed to academic organisations, conferences and journals and following a successful grant application I am now employed part time by Goldsmiths College on a temporary contract. I have also worked on commissioned research projects with a number of non-academic organisations.

Helen Veale: Before seven years ago I enjoyed career, starting out as a local government, and later to become a manager in the NHS then in the Department of Health. Now I’ve given up paid work I am able to pursue more of my interests – walking, cycling, yoga, singing, reading and studying (currently hypnotherapy and NLP). I am a volunteer tutor with the Expert Patient Programme and a member of the St Bart’s Hospital Clinical Network Co-ordinating Committee for M.E. services. As I’m also Mum to two teenage boys, I have to be careful to keep pacing myself so that I don’t overdo things!

Reference group
The Reference Group was put together for two reasons. Firstly, to enable people to comment on papers etc. who, due to the severity of their M.E. are unable to travel to Steering Group meetings. Secondly, because of the overwhelming response received to this project, it gives people who could not be appointed to the Steering Group, a chance to become involved. Action for M.E. and the National Research Observatory team are pleased to welcome to the Reference Group:

Nicolette Bolgar, Sally Dench, Ciaran Farrell, Sarah Feehan,
Frances Gibson, Sarah Harper, Catherine Hislop, Barbara Hutchison,
Caroline Marr, Caroline Middleton, Erzsebet Toth, Joanna Shackleton,
Angela Bradley, Sasya Morar, Nina Crummy and Ben Brown

Extract from InterAction magazine, Issue 61, September 2007

Action for ME

More thoughts on the Gibson Report from Angela Kennedy – revisited

Over the next few days, I am planning to post a brief commentary on what has been happening over on Planet Wiki in relation to Wikipedia article page for Professor Simon Wessely.  Defined by Wiki Admin as a ”Controversial” topic, this article (in common with the CFS page) is closely policed by Wiki Admins.  There is a big brass lock like the one on my shed at the top of the Wessely page and the page is currently protected from editing until disputes have been resolved.

In the meantime, social scientist, Angela Kennedy has kindly given permission to publish an edited commentary originally published last December, following the publication of the “Gibson Report”.  This important commentary has considerable relevance to what is currently happening on Wiki Wessely.

---

This is an edited version of a commentary first published in December 2006 by social scientist, Angela Kennedy, following publication of the “Gibson Report”.

More thoughts on the Gibson Report from Angela Kennedy

These are some of my thoughts on some problems in the Gibson Report.

My own concerns below are in addition to other concerns expressed by others (including but not limited to the dismissal of Lyme, the children’s section, the approval of CBT etc) and also in addition to approval of some of the more positive aspects of the report. As I have said before, the key is that no matter how positive some aspects may be, it is the dangers that we need to guard against, and therefore it may not be in the community’s best interest to wholeheartedly endorse the report, even in principle. In fact my own opinion at present is that it would be foolhardy.

It was only by reading this report about four times and reading John Sayer’s comments [Page 77: The ONE CLICK Report Gibson Inquiry], and putting my sociological linguistic analysis head on (as tedious as that appears to be to some people!) that the following problems occurred to me. I didn’t see it on the first reading at all.

With regard to point 2 below, the Report claims patient hostility TOWARDS DOCTORS THEMSELVES (not their policies) SEVEN TIMES.

With regard to point 3, I believe that comment from the Report has been made before by a Psych – possibly Peter White? [Ed: ref to Professor Peter Denton White, Barts CF Service] I will look it up.

These comments have been submitted to One Click as part of their consultation exercise.

My comments are as follows:

1. This report is written in a very idiosyncratic style – which one would not expect from a document produced by a group of parliamentarians and where clarity is of vital importance. There are, therefore, some confusing statements requiring further clarification, for example:

“The group does not intend to criticise the motivations or actions of any one group…” (What does this mean? Should an Enquiry not present criticism if necessary?)

“…indeed, the Group wishes to avoid being distracted by debates centring on semantics in this difficult and contentious field…” (This statement is charged with innuendo yet nebulous at the same time. What ‘semantics’ problems have been encountered by the Group?)

2. Both by Dr Ian Gibson himself in communications around the report – for example, in his article published in the Journal of Clinical Pathology in August 2006, and within the Report itself, emotive and inappropriately inflammatory language against patients, both individually and as organised advocates (or ‘groups’), that has no place in a report ostensibly on scientific research into ME/CFS has been used on more than one occasion, for example, from the report:

“…for some sufferers, their personal physical experience of the illness has led to resentment of those who favour a psychosocial/behavioural course.” (This comment is unnecessary and speculative. Patient representatives who criticise the psychiatric paradigm do NOT express negative personal feelings towards the proponents of the paradigm. They critique the paradigm itself and the actions of its proponents. To claim otherwise is emotive and inflammatory.)

“…we are left in no doubt that this is a contentious field, and some of the evidence we heard provoked considerable hostility from the audience.” (What audience? Why an emotive term such as ‘hostile’?)

“Quite apart from the often strongly polarised views of some patient campaigning groups and the scepticism of some of the medical profession, there have been disagreements, even amongst those who represent different groups of patients and medical professionals. This has left many patients feeling very aggrieved, and many doctors feeling misrepresented.” (The comment about patients’ feeling is unnecessary and contributes to an insinuation of patients as being “over-emotional”, while doctors, in contrast, are merely and justifably feeling ‘misrepresented’.)

“Professor Wessely is considered by many to be the leading expert on treating CFS/ME and the CFS/ME treatment centres set up by the NHS have been to his model. Many patient groups oppose these treatments, because, although they are founded on the positive results of controlled clinical trials, they are psychologically based.” (Here patients are implied as being prejudiced against psychological treatments, despite the alleged efficacy of the treatments. This is clearly not an accurate summing up of advocate critique of the psychiatric paradigm, which is based on critical analysis of the evidence and claims put forward by proponents of the psychiatric paradigm. To insinuate otherwise appears disingenuous.)

“Wessely gave up the research side of his work, possibly due to extreme harassment he received from a very small fringe section of the ME community.” (It is quite simply ludicrous that an inquiry carried out by parliamentarians has apparently accepted such serious yet nebulous, and apparently un-evidenced allegations at face value. This part of the report is particularly inflammatory towards patients and therefore inappropriate.)

“Their observations that GET [Graded Exercise Therapy] may make severe sufferers feel worse, has lent fuel to their often serious antipathy to the doctors offering it.” (Again, this comment is unnecessary and speculative. Patient representatives who criticise the psychiatric paradigm do NOT express negative personal feelings towards the proponents of the paradigm. They critique the paradigm itself and the actions of the proponents. To claim otherwise is emotive and inflammatory.)

“…there is a great deal of frustration amongst the CFS/ME community that the progress made in the late 1980s and early 1990s toward regarding CFS/ME as a physical illness has been marginalised by the psychological school of thought. It is clear the CFS/ME community is extremely hostile to the psychiatrists involved.“ (Again, this comment is unnecessary and speculative. Patient representatives who criticise the psychiatric paradigm do NOT express negative personal feelings towards the proponents of the paradigm. They critique the paradigm itself and the actions of its proponents. To claim otherwise is emotive and inflammatory.)

The frequent categorisation of patients as angry and hostile is a highly unfortunate feature of this document. It has already been found that this tendency to describe patients thus is rife within the literature of proponents of the psychiatric paradigm (Kennedy A, 2005, Hooper, 2004, Marshall and Williams, 1996, 1999). It is therefore highly demoralising to see similar constructions of patients within the Gibson Report.

In Gibson’s JCP article, he states: “…to curtail attempts of some to suppress what they hear and what they see written down and to keep their vitriolic actions and comments at bay.” It is clear that Gibson has allowed personal prejudice to inform the way he has constructed the very people he claims to want to consult. In the circumstances, it is ironic that the Gibson report claims “…our task is to highlight the ongoing struggle of the CFS/ME community and to ensure that the voice of the patient is heard.” By constructing patients or their representatives as hostile, ‘vitriolic’ and unreasonable is to further alienate the community from enfranchisement. It is astounding to find such emotive and inflammatory language in such a document.

3. “…for some doctors to deny the existence of a physical part of the illness is as equally unhelpful as the claim by some patient groups that there is no psychological element to the disease.” (This statement is problematic on a number of fronts. There is a construction of a “straw man”- the alleged doctors who deny physical elements of the illness. In actuality, no doctors would do this. The fundamental contention arises where doctors assign psychiatric causes to physical symptoms. By ignoring this fundamental problem, the Report engages in “fence-sitting”, which, in actuality, allows the psychiatric paradigm to take ascendancy. Furthermore, to claim that ‘some patient groups’ are claiming that there is no psychological element to the disease is speculative and misrepresentative – patients have instead been arguing that any psychological aspect of ME/CFS can be seen in any other organic disease, and that there should be no special pleading for ME/CFS as somehow more ‘psychological’ than any other organic disease.)

4. “A lot has been made of the link between CFS/ME and Lyme’s [sic] disease or Lyme Borreliosis.” (What does “A lot has been made” mean? In light of the further statements made on this subject – it appears a very trivialising statement to make, in the face of strong research and clinical evidence demonstrating the relevance of this issue to ‘CFS/ME’.)

5. The recommendations in section 4.7 are astounding, for example, “other symptoms should be treated only when the doctor had absolutely excluded any other underlying organic illness that could be the cause…” and “ if depression is felt to be a significant result from the illness and contributing to its overall effects then anti-depressants may help if prescribed with full explanation by the doctor.” In this section, the Gibson Report is actually giving medical advice to doctors, a la NICE! This could not possibly be part of its remit.

6. “…the lack of easy confirmation of the organic nature of the illness by a readily available investigation lends itself to occasional invasion by those who are not genuine sufferers. The existence of such patients, and the inability of some in the medical profession to separate them from genuine patients with CFS/ME enhances the view that all patients with CFS/ME are neurotic and/or not genuinely ill.” (These comments appear to arise from pure speculation and opinion. Such comments point to the special pleading of ME/CFS being a ‘malingerer’s charter’ – a professed view of certain proponents of the psychiatric paradigm.)

7. In light of the many real problems of this report, a glowing endorsement by the ME/CFS/borreliosis etc community would be dangerous.

The report has various dangerous flaws. If it is endorsed in its entirety – it could have far-ranging adverse effects on many members of the community.

The Gibson Inquiry/Report has many similarities to the CMO’s report- the usual curate’s egg situation – good in parts. But it is the flaws that form the most potential dangers to the ME/CFS community. People’s safety is at stake, and here we are faced with possible risks to that safety caused by government intervention, a valid concern of advocates since the beginning of this Inquiry.

There are some fair questions to ask: How damaging will the flawed parts of the Gibson Report be to sufferers themselves? Will we find the positive aspects not followed up because the report actually has no teeth – but the flawed comments adopted to the letter by the psychiatric lobby and their government supporters?

No patient or patient representative has to endorse the report as a whole, even if some of the recommendations / comments are considered good.

REFERENCES

Hooper, M. et al. The Mental Health Movement: Persecution of Patients? 2004

Kennedy, A. A SHORT SUMMARY OF THE PSYCHIATRIC PARADIGM OF ME/CFS 2005

Marshall, E. Williams, M. Denigration by Design? A Review, with References, of the Role of Dr (now Professor) Simon Wessely in the Perception of Myalgic Encephalomyelitis, Volume I: 1987-1996: August 1996 (217 pages); Marshall, E. Williams, M. Denigration by Design? Volume II: 1999 Update: December 1999 (270 pages).

© 2007 Angela Kennedy

[A version of this commentary was originally published on the PWME Yahoo Group and on The ONE CLICK Group in December 2006]

eBMJ rejects Simon Wessely’s response to NICE Editorial

Dr Simon Wessely is a GP who has ME and should not to be confused with Prof Simon Wessely who does not have ME…

…a week or two ago, Dr Wessely submitted a response to the eBMJ to the NICE CFS/ME Guideline Editorial. The Editor unaccountably rejected his letter. I have read through Dr Wessely’s response three times and I cannot see why the Editor of eBMJ Responses should have had a problem with his comments – I can see nothing in this response that might be construed as being libellous, profane or which might in some other way give the BMJ lawyers a headache – unless of course it’s because of his name – perhaps the Editor thought it was a joke.  But it isn’t a joke, because Dr Simon Wessely is a really NICE guy living with a really NASTY illness. Dr Wessely has very kindly given permission to reproduce his response on ME agenda.

(Unpublished) Rapid Response to eBMJ to NICE CFS/ME Guideline Editorial:

THE (ME) WORLD ACCORDING TO NICE:

Simon Wessely

Why is it that GET (Graded Exercise Therapy) is mentioned but has no one at Nice heard about the threshold phenomenon? When I was fit and well I could train and improve my stamina by increasing my training with a maximum of 10% a week, so I wouldn’t get injured and I completed a marathon in just over three hours. And I have kept fit my whole life, just because I like sport. The trouble with ME is that you can’t increase your stamina. My body tells me exactly what the threshold is. And the only one who can change this is my body.

I have seen some other symptoms decrease or disappear and I hope the same will happen to this threshold. Obviously I have tried the same principles I used in running to increase my threshold since I have ME, but every time I do so, things get a lot worse. At the moment I can manage to walk the enormous distance to the toilet and back. But only once an hour. If I do it twice, a one hundred percent increase, the pain is so extreme, that even a piece of paper on my legs hurts a h… of a lot. GET is a very quick way though to know if someone has ME. If they can train and improve, they don’t have ME. The trouble though is, that it is very easy to get a relapse due to GET, and get a lot worse. So GET is NOT a good idea if you really have ME. I welcome advice by an institute as NICE about a disease. However, there are too many guidelines for busy GPs to read. The problem is, I’m having time, and my brain is starting to work again, so I can have a look at these guidelines, even if this takes me days.

I’m one of those doctors with ME, and like many others I was taught that ME didn’t exist. So then to be diagnosed with ME was a bit of a shock to put it mildly. Before I fell ill, I have never been to my doctors but still, that didn’t mean that I was taken seriously. Interestingly enough one of them is a GP trainer, but even that didn’t help.

Reading your guideline all you need to have to diagnose ME is tiredness and a sore throat.

The Oxford criteria said: tiredness.
CDC/Fuduka said: tiredness plus a minimum of 4 out of 8 listed symptoms.
The Canadian and Australian Guidelines* speak of a whole list of symptoms and it seemed that finally we were separating ME from other illnesses.

*[SOUTH Australian Guidelines (2004)  http://sacfs.asn.au/download/guidelines.pdf]

And I’ll show you why this is important.

I have been confined to my bed for a long time with extreme muscle pains and cognitive dysfunction, such as difficulty with information processing. In reality this meant I could not read, use the laptop, listen to music or watch TV. As I couldn’t walk as well, I have had an interesting time, just like many others with this disease. Not to mention how GPs and others have perceived me and judged me. Now as a simple GP this sounds a bit different than tiredness and a sore throat. But I might be wrong.

You say in your guideline that “Most people with CFS/ME will improve over time and some will recover and be able to resume work and normal activities.” You also say “Offer cognitive behavioural therapy (CBT)” to help coping etc. This apparently is the best evidence based therapy as you call it. The interesting thing is, Nijmegen said in the Journal called: Psychotherapy and Psychosomatics, Vol. 76, #3, pp 171-176, in April 2007:
“After treatment, 69% of the patients no longer met the CDC criteriafor CFS.” So I would say as a simple GP, 69% was cured. Because if you meet the CDC criteria you have ME and once they are gone, you don’t have ME anymore. Their (Nijmegen) basis for CBT is: “Once the patient is convinced of the absence of a somatic cause for his symptoms, and is motivated to explore psychological consequences of his complaints (the first steps in CBT), he can benefit from CBT rapidly.”

In your guideline though, you say, advice CBT but only to cope, so it doesn’t cure. And that is exactly what the Canadians and Australians say in their guidelines; there is no cure for ME. So as a simple GP, what are we supposed to tell the patients, does CBT cure ME or not? And if it doesn’t cure, what every ME patient can tell you, then where is the evidence from all the Nijmegen articles, to use CBT in ME?

Interesting is also the fact that the WHO classifies ME as a neurological disease and I have always learned that psychosomatics was something else. But hey, wrong again. It gives a good idea though how people perceive a ME patient.

Also, if there is no cure for ME, it is even more important to make sure that we don’t label patients, who don’t have ME, as a patient with ME. For the simple fact, that we might be able to cure them. Sounds a lot better than no cure, I can assure you.

But from now on, many GPs will think, fatigue and sore throat = ME.

Another interesting thing in your guideline is the following statement: “The keys to pacing are knowing when to stop and rest by listening to and understanding one’s own body, taking a flexible approach and staying within one’s limits.” Nijmegen however states that we shouldn’t listen to our bodies because our illness beliefs are wrong. Once we overcome those, hoopla, ME gone.

If you however think that having ME is the worst part, then you are wrong. It is not only the extreme pains, the noise intolerance, for example simple noises like using cutlery to eat, or a door being shut, that makes too much noise, or a brain that doesn’t function. It is not only doctors, of the seven doctors in the practice, I have now found the one who actually thinks that someone who hasn’t been to the surgery for fifteen years, and then suddenly starts coming, might actually have a problem. Silly approach, I know.

It is also interesting to see how friends and family treat you and are calling you all sorts of names, because there is no test for ME. So we are lazy, not motivated because if we were motivated, we would have been better a long time ago. And you can think of a few other things people say. Some even do it every time they see you. Great. Is that what Nijmegen et al call the secondary gains of being ill? And I can assure you, going from sporty and very active, to a life in bed, is difficult enough to accept, let alone dealing with all those other things around ME. But if you read the comments here in the BMJ, for example those TV comments, then those are a hundred times more beneficial, than that hokus pokus CBT thing. I have tried it, as I want my normal life back, but I have never seen so much silliness being sold to me as therapy for ME. The other interesting thing about CBT is that if it works the psycho people have done a good job, and when it doesn’t it is my fault. A win win situation for Nijmegen et co. And what did we tell people with MS for decades, to name just one disease where we got it completely wrong? They had a catatonic unwillingness to move. False illness beliefs, interesting concept. But why don’t we learn from our mistakes in the past? And don’t forget, even you can get ME. Even if you think it is only for softies.

Competing interests: GP and ME patient, yes they do exist.

A ninth batch of responses to NICE CFS / ME Editorial and Review: BMJ

A ninth batch of responses to the NICE CFS/ME Editorial and Review have been published on the Rapid Response pages of the BMJ website (and Dr Speedy finally gets his response published):

EDITORIALS:
Peter White, Maurice Murphy, Jill Moss, George Armstrong, and Sir Peter Spencer Chronic fatigue syndrome or myalgic encephalomyelitis

BMJ 2007; 335: 411-412

All responses to this Editorial can be read here

11]  Re: WHO is relieved by NICE?
22 September 2007

Dr Speedy, GP, ME, Place of work: MY BED.

Many things have already been said, but I would like to take this opportunity to add a few things:

The recently finished Gibson Enquiry states that: “In Britain, there has been a clear historical bias towards research into the psychosocial explanations of CFS/ME. This is despite Parliament recognising ME as a physical illness in a Private Members Bill, the ME Sufferers Bill, in 1988.”

Furthermore it mentions that “The WHO (World Health Organisation) in Geneva holds an internationally recognised classification that ME is a neurological disease.”

And in February 2004, the then Health Minister (Lord Warner) made it very clear, in a formal written acceptance, “that the UK ACCEPTS the World Health Organisation classification of ME as a neurological disorder.”

And now if you keep that in mind and just read the NICE guidelines on ME again DEAR MR EDITOR.  More than a hundred pages and NOWHERE do they mention that ME is a NEUROLOGICAL illness.
NOWHERE AT ALL.

Now I also have a question for all the people who have written excellent responses on this page. I have started a BLOG:

http://niceguidelines.blogspot.com/

Is it alright if I would use some of your comments on my BLOG?? If not or if you have any suggestions, please let me know. My email address is on the right hand side of my Blog.  All the patients and carers for patients with ME, all the best.

Can I take this opportunity to thank all the doctors who are working hard and trying to help us. And for Mr NICE, maybe go and visit a few patients with Severe ME, I’m sure you will get a totally different view and you will understand why the Canadian and Australian guidelines* are so much better and also so much more helpful to get the diagnosis right.

*[SOUTH Australian Guidelines (2004)  http://sacfs.asn.au/download/guidelines.pdf]

Because remember, people with ME we can’t cure, but the many people who haven’t got ME, see also professor Mirza’s response on

http://www.bmj.com/cgi/eletters/335/7617/446#top, who wrote that 90% of the patients he sees with a diagnosis of ME have something else with fatigue, we can ACTUALLY TREAT. And that sounds a lot better I can assure you.

Competing interests: Bedbound GP with ME.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

12] ME and Psychiatry
23 September 2007

Michael Morris, Retired Psychiatrist Wellington, New Zealand

“The uncertainty inherent in making a diagnosis of chronic fatigue syndrome (CFS) is reflected by the variety of names (such as myalgic encephalomyelitis; ME).”

Many people who have responded, have mentioned the Canadian and Australian guidelines*; both were unfortunately not used by NICE at all.

*[SOUTH Australian Guidelines (2004)  http://sacfs.asn.au/download/guidelines.pdf]

A shame really, if you see what an excellent tick list they have produced to enable doctors to (almost) rule this uncertainty or difficulty out. I say almost, because there is no medical condition were we, as doctors, get the diagnosis right all the time.

The other thing I am a bit surprised about, is that the Editorial is written by a professor in psychiatry and the second article in the same BMJ about ME and NICE was written by another professor.

When I Google a bit, this is what I find on his site about him: “The Department of Health Sciences at the University of Leicester is a research-led department with established strengths in epidemiology, medical statistics, social science, public health, primary care, health services research and PSYCHIATRY.”

All really NICE, but why wasn’t someone like Dr Speight the Paediatrician, who has specialised in ME for more than twenty years, or Dr Chaudhuri, the neurologist, who also specialises in ME (and a few other neurological diseases) and who both acknowledge the fact that ME is a neurological disease, as Classified by the WHO, not asked instead to write about ME???

It would have given a much more balanced view if both a Neurologist and a psychiatrist would have written about this subject which is deemed by many as a controversial disease, just as we did with MS for example, when it was still called Hysteria.

Even though I, and many others, think after reading the splendid psychiatric guidelines about ME by Dr Stein, that the psychiatrist ONLY has a role in this chronic neurological disease if patients develop a depression or so alongside their ME.

Competing interests: We as psychiatrists should spend more time helping patients with a mental health problem instead of wasting valuable time and resourches on a neurological illness.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Both these Rapid Responses were circulated via Co-Cure by Tom Kindlon, Tom added the following note to Dr Morris’s response:

[TK: With regard to the Australian guidelines, as he mentions a tick sheet he must be referring to the South Australian Guidelines which were a shortened adapted version of the Canadian Guidelines (done before the Overviews came out).

 See: http://sacfs.asn.au/download/guidelines.pdf ]

Sunday Times, In Gear: Letter from Dr John Greensmith

Sunday Times: In Gear Letters section (in response to the “handy vibrating Massage Ball” article, Coping with ME, In Gear, 2 September 2007)

Well done, John!

ME MIRAGE

Progress towards a cure for ME (myalgic encephalomyelitis) is being hampered and delayed because we are putting all our funding into trying to manage it (Coping with ME, In Gear, September 2) instead of trying to discover its physical cause and provide a definitive diagnostic test for disbelieving doctors.

This cart-before-the-horse approach has produced a multi-million-pound network of clinics offering two treatments, one of which, cognitive behaviour therapy (CBT) does no lasting good for people with ME, and the other, graded exercise treatment (GET), which does lasting, irreversible, harm for some ME sufferers.

Ignorance and desperation have also opened the door to a number of costly radical treatments that are unproven, rely on faith and only have the testimony of a biased sample of patients who claim success, many of whom go on to be therapists themselves in a money-making pyramid process.

Nothing will change for ME sufferers until the biomedical research is put first.

Dr John H Greensmith, Downend, Bristol

Pulse: Stomach virus strongly linked to CFS, 20 September 2007

http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4114721&c=2

Stomach virus strongly linked to CFS
20 Sep 07

See also: http://www.pulsetoday.co.uk/story.asp?storycode=4114380

and

http://www.pulsetoday.co.uk/story.asp?storycode=4007463

Coercion as Cure? Eileen Marshall, Margaret Williams, 21 September 2007

COERCION AS CURE?

Eileen Marshall Margaret Williams

21 September 2007

On 15th September 2007 The Times carried an article about cognitive behavioural therapy (CBT) by the newspaper’s Science Editor, Mark Henderson. Henderson noted that CBT “seeks to improve the symptoms of illness by changing patients’ attitudes, thoughts and feelings” and that this had often struck people as being “flaky”, even though courses of CBT “seem to change the way that people approach mental illnesses, allowing them to alter their behaviour in a constructive fashion”.

However, Henderson maintained that the “flaky” image of CBT was changing, because CBT “is showing promise in more unlikely fields. Several studies have shown that it can improve the prognosis for some cancers and this week, Professor Trudie Chalder, of King’s College, London, announced that it can help people with type I diabetes. Though her study has not yet been peer-reviewed or published, Professor Chalder described the results as positive”.

No information was provided about the source or authors of the studies of CBT that Henderson claimed had improved the prognosis for cancer.