Benefits and Work: Will you challenge the benefits millionaire maker?

The February Benefits and Work newsletter is now published

Will you challenge the benefits millionaire maker? 28.02.08

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Patients Declare UK New Labour Party Is Finished

This information is available on THE ONE CLICK GROUP website

Patients Declare UK New Labour Party Is Finished

A Petition to Gordon Brown (Labour, Kirkcaldy and Cowdenbeath), the UK Prime Minster was recently launched to underscore the plight of patients suffering under the ME/CFS label in the UK. At the close of this Petition, the New Labour government responded.

Instead of accurately and responsibly answering the concerns of ME/CFS labelled patients – the electorate – New Labour very stupidly decided to parrot the scientifically fraudulent dogma produced on this illness by the psychiatric lobby, precisely the small cohort of psychiatrists that has done these patients so much damage.

It is entirely fascinating to see that politicians have still not yet grasped the growing conjoined lobby power of the internet and precisely what this modern communication engine is now capable of doing to their prospects.

Patient Power Lobby

In October 2007, the One Click health advocacy pressure group launched a legal appeal to raise funds to challenge the appalling CFS/ME NICE Guidelines in the High Court.

We raised the necessary money in matter of weeks using the internet to drive our campaign. Although obviously an extremely good result, the entire genesis of this campaign was purposefully designed to do far more than just fundraising and it has.

From the multitudinous patients who have supported the One Click campaign, we have now developed a political lobby fighting force that has the conjoined power to visibly and vocally challenge the government at the next election.

New Labour (and all the other political parties in Britain for that matter) would do well to remember that there are 240,000 ME/CFS labelled patients in Britain, 200,000 of them adults with the vote. If we were to elect to conjoin with the anti-vaccine lobby with 1 child in every 100 labelled with autism, the electoral movement generated would run into the many millions.

Every single UK Member of Parliament has been placed on to the One Click News Alerts distribution list to ensure that these politicians are able to keep up to date with the medical and political information that matters so much to their constituents.

Subscription to the news published by One Click is entirely elective. To date, out of the over 600 Members of Parliament subscribed to One Click together with thousands of Opinion Formers around the world, only twelve MPs have resigned, most of them belonging to New Labour. Our Administrators are keeping an entirely accurate record of events that will be published close to the next UK General Election.

As so clearly indicated in the Health and Social Campaigners Network Report published in February 2008, as the types of advocacy organisations proliferate they militate patients who will become more pervasive and influential whilst they ride and control the winds of change.

No one will ever forget that it was the New Labour government that illegally took us into the oil war in Iraq that hundreds of thousands of British citizens protested against, with so many of differing nationalities now needlessly dead and disabled for life.

Nobody will ever forget the New Labour ‘nanny state’ losing the confidential data of hundreds of thousands of voters, nor the fact that the British are more spied upon by government than any other country in the world.

The sleaze and incompetence of New Labour with its financial links with the pharmaceutical industry, as so clearly evidenced by its sinister government lobby groups such as Sense About Science and the Science Media Centre, are political killers.

The foregoing are but a few examples of just how the voters feel about this government.

Gordon Brown and his New Labour government have made a fundamental mistake in their published response to the ME/CFS Petition that has served to radicalise patients.

The internet is still in its lobby power nascent infancy, with its enormous potential as yet unrealised by politicians, many of whom are so coddled by their staff that they struggle to work a computer. Come the next General Election in Britain, watch this space.

Go fall on your sword Gordon Brown of UK New Labour, before the conjoined patient power of the electorate rams it home for you. The electoral prospects for the New Labour party in Britain have been spectacularly diminished today in more ways than one.

The One Click Group

27 February 2008

The ME/CFS Petition

“We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome. The latest DWP Guidelines and PACE are still directing the Health Service to treat ME sufferers with GET and CBT (a tool used for mental illnesses) despite the mounting evidence from a vast amount of research proving that ME is an organic not a psychosomatic disease and that the treatments forced onto those affected do in fact cause more harm than good and can worsen the condition of patients. Money should instead be invested in research into the physiological aetiology of ME/CFS and its treatment. Patients should not be forced into becoming psychiatric cases or lose their benefits.

The New Labour Government’s Response

There is no established cause of chronic fatigue syndrome/myalgic encephalopathy (CFS/ME). A number of different potential aetiologies including neurological, endocrine, immunological, genetic, psychiatric and infectious have been investigated, but the diverse nature of the symptoms can not yet be fully explained. The World Health Organization classifies CFS/ME as a neurological illness, but we recognise that many others working in the field of CFS/ME believe that until research further identifies its aetiology and pathogenesis, there is a risk of restricting research into the causes, mechanisms and future treatments for CFS/ME. What is important to recognise that CFS/ME is a genuine and disabling illness and health professionals must recognise it as such.

 

As will all serious illnesses, it is important that patients, their families and the healthcare professionals looking after them have the best scientific information available and the PACE trial has been designed to help them decide for themselves what treatment is likely to be best from them. There is currently very little information about the relative benefits of cognitive behaviour therapy (CBT) and graded exercise treatment and a scientific trial is the only way to find out which is the most effective approach.

 

The aim behind CBT is to support a sustainable improvement in functioning and adaption to illness, via gradual steps that are mutually agreed and regularly reviewed by patient and clinician. Applied appropriately, CBT can help the patient cope confidently with their illness and help them adjust to some of the consequences of being unwell and to feel more in control of their illness. In common with other illnesses such as cancer where it has been successfully used, its use does not imply that the cause of the illness is psychological.

 

As with any treatment, an explanation of the benefits and possible harmful effects of CBT should always be provided before decisions are made to offer and accept the treatment. It is important that health professionals recognise that people can vary in response to the treatments available and that it is appropriate to review therapy if symptoms appear to worsen as a result.

 

The Medical Research Council’s support for the PACE trial does not mean that money is not available for biomedical research and the Council remains committed to funding scientific research in all aspects of CFS/ME. Nevertheless it is important to maintain high standards in funding decisions and the MRC maintains a rigorous a decision making process, only funding research that is likely to make a significant contribution to knowledge and is a good use of tax payers’ money. The decision to reject proposals is taken on the grounds of scientific quality and whether the research proposed would be likely to inform the knowledge base.

Gordon Brown, New Labour Prime Minister

ME-is-real petition: Government’s response

http://petitions.pm.gov.uk/ME-is-real/

We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome.

Submitted by Konstanze Allsopp – Deadline to sign up by: 22 January 2008 – Signatures: 8,481

Deadline reached

More details from petition creator

The latest DWP Guidelines and PACE are still directing the Health Service to treat ME suferrers with GET and CBT (a tool used for mental illnesses) despite the mounting evidence from a vast amount of research proving that ME is an organic not a psychosomatic disease and that the treatments forced onto those affected do in fact cause more harm than good and can worsen the condition of patients. Money should instead be invested in research into the physiologocal aetiology of ME/CFS and its treatment. Patients should not be forced into becoming psychiatric cases or lose their benefits.

http://www.pm.gov.uk/output/Page14656.asp

Read the Government’s response

There is no established cause of chronic fatigue syndrome/myalgic encephalopathy (CFS/ME). A number of different potential aetiologies including neurological, endocrine, immunological, genetic, psychiatric and infectious have been investigated, but the diverse nature of the symptoms can not yet be fully explained. The World Health Organization classifies CFS/ME as a neurological illness, but we recognise that many others working in the field of CFS/ME believe that until research further identifies its aetiology and pathogenesis, there is a risk of restricting research into the causes, mechanisms and future treatments for CFS/ME. What is important to recognise that CFS/ME is a genuine and disabling illness and health professionals must recognise it as such.

As will [sic] all serious illnesses, it is important that patients, their families and the healthcare professionals looking after them have the best scientific information available and the PACE trial has been designed to help them decide for themselves what treatment is likely to be best from them. There is currently very little information about the relative benefits of cognitive behaviour therapy (CBT) and graded exercise treatment and a scientific trial is the only way to find out which is the most effective approach.

The aim behind CBT is to support a sustainable improvement in functioning and adaption to illness, via gradual steps that are mutually agreed and regularly reviewed by patient and clinician. Applied appropriately, CBT can help the patient cope confidently with their illness and help them adjust to some of the consequences of being unwell and to feel more in control of their illness. In common with other illnesses such as cancer where it has been successfully used, its use does not imply that the cause of the illness is psychological.

As with any treatment, an explanation of the benefits and possible harmful effects of CBT should always be provided before decisions are made to offer and accept the treatment. It is important that health professionals recognise that people can vary in response to the treatments available and that it is appropriate to review therapy if symptoms appear to worsen as a result.

The Medical Research Council’s support for the PACE trial does not mean that money is not available for biomedical research and the Council remains committed to funding scientific research in all aspects of CFS/ME. Nevertheless it is important to maintain high standards in funding decisions and the MRC maintains a rigorous a decision making process, only funding research that is likely to make a significant contribution to knowledge and is a good use of tax payers’ money. The decision to reject proposals is taken on the grounds of scientific quality and whether the research proposed would be likely to inform the knowledge base.

ONE CLICK Judicial Review: Campaign Update 4

One Click NICE Judicial Review
Campaign Update 4

http://tinyurl.com/377qcg

25 February 2008

One Click Group Director Jane Bryant writes:

Dear All

I write to you today on a subject very dear to the hearts of hundreds of thousands of people around the world – the One Click Judicial Review of the appalling CFS/ME Guidelines produced by the National Institute for Health and Clinical Excellence (NICE) in the United Kingdom.

So often I have wanted to write to you on this subject.  To explain the weaving, the ducking and diving, the secretive duplicity and the sheer political malfeasance carried out by some over this court case. Each time I have stayed my hand. Stayed my hand in the hope that the sheer grinding hard work going on behind the scenes of this case would improve our position.

It is my happy duty to announce to you today that thanks to the formidable representation carried out by our excellent lawyers Saunders Solicitors LLP and the work of One Click conjoined to help ME/CFS labelled patients, we have very good news to impart.

One Click NICE Judicial Review Background

One Click is taking on new global readers every day of the week and so I feel that it is beholden upon me to provide  a short backgrounder for everyone in relation to this momentous High Court case.

For many years, the One Click health advocacy pressure group has been a Registered Stakeholder on the development  of the CFS/ME NICE Guidelines (
http://tinyurl.com/ysxa8v
) since their inception.

One Click submitted our material to NICE contributed by patients, doctors, academics, health advocates, carers, families and friends from around the world. No matter how many obstacles were put in our way by NICE, we overcame them to submit our formal evidence.

See The One Click Group Response – CFS/ME NICE Guideline (
http://tinyurl.com/ygweub
), submitted to NICE on 16 November 2006 and updated by us on  6 October 2007.

Upon publication of these Guidelines in August 2007, it became abundantly clear that our formal representations to NICE by due process, along with many other Stakeholders besides, had made absolutely no difference. That the entire production and publication of these Guidelines had been unlawfully hijacked by the psychiatric lobby that has been  permitted by government to control all research and treatment on ME/CFS in the United Kingdom for many years.

In October 2007, One Click therefore formally and publicly announced our intention to take NICE to the High Court for  Judicial Review of these Guidelines. Our announcement was sent to the NICE Chairman Michael Rawlins, Chief Executive Andrew Dillon and various NICE personnel. 

We subsequently approached the Legal Services Commission (
http://www.legalservices.gov.uk
) (Legal Aid) for their
assistance in funding this momentous case.

The Legal Services Commission complied. It provided us with initial funding to work with our formidable barrister,
Kate Marcus from Doughty Street Chambers (
http://www.doughtystreet.co.uk
) and to lodge our Application  with the High Court. 

See 21 November 2007 Press Release, ‘Health Advocacy Pressure Group Launches NICE High Court Action Today’ (
http://tinyurl.com/yvlz3r
).

Fundraising

In December 2007, the Legal Services Commission asked us to raise £10,250 as our financial contribution for this case  against NICE to be brought in the name of your young Ben, The One Click Group Technical Director. With great  difficulty and with excruciating hard work, we raised the pain-soaked thousands of pounds demanded by them.

From around the world we collected your financial pledges to fight this case, sent direct to Saunders Solicitors LLP.  From a little boy donating his pocket money from the United States to an entire church congregation in the UK, the funds arrived from patients, their carers, families, friends, doctors, academics, researchers and selected charities from around the world. £5 here, £10 there and a bit more from those who could afford it. From Switzerland, Australia, the United States, Germany, France, New Zealand, South Africa, South America, Canada and the United Kingdom to name but a few, in came your contributions to challenge NICE in the High Court frequently accompanied by your words.  The words of pain, medical neglect, malfeasance and of the psychiatric lobby manipulation of this neurological illness  – your heartbreaking stories flooded in to One Click and its lawyers.

Your response to us was so great. We immediately recognised that we are making legal history with this case. Never has  anything like this been done anywhere else in the world before.

The very idea of the Legal Services Commission forcing us to raise so much money to challenge deeply flawed government policy made me feel utterly sick because it fundamentally and completely conflicts with access to justice and the very concept of political democracy. Nonetheless we complied. 

Saunders informed the Legal Services Commission that we had reached their £10,250 target and on 20 January One Click published ‘Very Simply We Did It’ (
http://tinyurl.com/2esegy
) to announce this momentous news.

Breaking News

Nothing is ever simple and straightforward with a case like this.

To our considerable dismay – nay outrage – the Legal Services Commission response to our £10,250 contribution was to elect to deny us the funding that we required to place our expert witness testimony before the High Court. Lest we forget dear friends, the Legal Services Commission is a government-funded quango with a Legal Aid budget of £2 billion. See The Times, ‘Public Let Down By Legal Services Commission’ (
http://tinyurl.com/2nfdd5
).

At that juncture it seemed to us that above all, the British government wished to place obstacles in the way of the pro bono expert witness testimony of Dr Bruce Carruthers – one of the foremost leading experts in the world on ME/CFS  and whose international medical consensus Guidelines make those of NICE look like fatal amateur night – surfacing in  the High Court.

Dr Bruce Carruthers is the lead author and co-editor of  the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:  Clinical Working Case Definition, Diagnostic and Treatment Protocols The ME/CFS Canadian Guidelines.  Funded by government, the ME/CFS Canadian Guidelines incorporate most all scientific research done on ME/CFS for the last ten to fifteen years.

Produced by a process of international consensus by a panel of scientists and expert physicians who have between them diagnosed/treated over 25,000 patients around the world, the ME/CFS Canadian Guidelines are the most advanced, consensual, clinical diagnostic criteria on this illness available in the world today. As such, they have long symbolised the wooden stake in the psychiatric lobby vampire heart ever since their publication in 2003.

Previously a Research Scholar on the Medical Research Council of Canada amongst his many other senior posts,  Dr Carruthers is without doubt one of the greatest ME/CFS experts alive in the world today in regard to criteria and  guidelines over this neurological illness, classified as such by the World Health Organisation under ICD.10 G93.3.

It was this man’s expert witness testimony that the Legal Services Commission was refusing to allow us to place before the Judge together with other expert testimony on the issue of Randomised Clinical Trials – the very base upon which these entirely flawed Guidelines have been predicated.

Had this Legal Services Commission funding refusal been allowed to stand, it would have represented the most crashing injustice and would have naturally caused worldwide outrage.

We are now pleased to report that on the 20 February 2008, the Legal Services Commission were obliged to reconsider their position after the excellent work carried out by Saunders Solicitors LLP and The One Click Group conjoined  in dedicated advocacy for patients.

We would like to thank the Legal Services Commission for this latest decision and take this opportunity to gently remind them of their mission statement that announces:

“Our work is fundamental to social and legal justice. In a democratic society all citizens have a right to access  justice and get a fair trial.”

It is to this government-funded quango’s credit that they finally elected to see the legal light.

I could go on at considerable length regarding the machinations of a High Court trial such as this that the British government simply does not want to happen, but it would serve no practical and useful purpose to blow the lid off the proceedings at this stage. What presently matters is that we have at last been granted the funding for our expert witnesses and our case is now full-steaming ahead.

Sir Winston Churchill, British politician 1874 -1965, knew what he was talking about when he said, “The chain  of destiny can only be grasped one link at a time.” We have grasped our latest link most firmly and are now on to the next, employing the vice-like tenacity grip on your behalf for which One Click has become so famous.

I would like to personally thank the expert witnesses who are providing pro bono medical testimony for our case  in the High Court.

I would like to particularly thank Saunders Solicitors LLP for their superb handling of legal events and also to thank our barrister Kate Marcus from Doughty Street Chambers who is now in a position to work up our expert evidence.

But above all I would like to thank YOU. All of you from around the world who are making this case possible.

I quote from the document ‘Very Simply We Did It’ (
http://tinyurl.com/2esegy
): “What this campaign has so starkly illustrated is that it is entirely possible for patients and their extensive friends around the world to band together and fight back to correct injustice.  The days of the Expert Patient and their associates making their voices formally and legally felt have now arrived at last thanks to you all.”

Between us all from around the world, we have created a legal fighting force that will not be denied.

I will be writing to you all further anon as our legal challenge of the appalling CFS/ME NICE Guidelines in the High Court progresses. Some of the information that I will doubtless have to impart to you all in the future may well rock you to your foundations.

Onwards and upwards dear friends. Our legal course is set fair.

Jane Bryant
Director
The One Click Group

************************************************************
This information is available on THE ONE CLICK GROUP website

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

MEA writes to ‘Magistrate’ magazine and the Youth Justice Board

Dr Charles Shepherd, Medical Adviser and Trustee, The ME Association has written to ‘Magistrate’ magazine and the Youth Justice Board.  Dr Shepherd states:

“ME is unambiguously classified in section G93.3 of ICD10 as a neurological disorder. CFS is indexed to this neurological classification. Furthermore, this classification is fully recognised by the Department of Health.”

Wrong. It is not “ME” but “[Benign] myalgic encephalomyelitis” that is classified at G93.3 of ICD10.

Whenever the ME Association responds to this type of issue Dr Shepherd is reduced to using the term “ME” rather than “myalgic encephalomyelitis” because the term “myalgic encephalopathy”, adopted by the ME Association several years ago, has no ICD10 classification whatsoever.

 

ME Association News page

‘Magistrate’ magazine and the Youth Justice Board

This is a copy of an email sent by The ME Association this afternoon to Frances Done, Chief Executive of the Youth Justice Board, about an article called ‘Offenders or victims’ which appears in the February issue of ‘Magistrate’ magazine.

To: Chief Executive of the Youth Justice Board

Dear Frances Done

Re ‘Offenders or victims?’ – feature in Magistrate magazine dated February 2008 (pages 42 – 43)

There is a serious error in the box on p43 labelled ‘Definition of Terms’. The error is referenced to a publication produced by the Youth Justice Board: ‘Mental Health: Key Elements of Effective Practice’.

Under ‘Mental Disorders’ bullet point 8 lists chronic fatigue syndrome (CFS), often called ME, under somatic disorders and states that it is one of a list of ‘…mental health problems that satisfy the diagnostic criteria of ICD-10, an internationally recognised system (ICD-10 refers to the World Health Organisation International Classification of Diseases).

The information about the ICD classification of ME/CFS in this box is incorrect.

ME is unambiguously classified in section G93.3 of ICD10 as a neurological disorder. CFS is indexed to this neurological classification. Furthermore, this classification is fully recognised by the Department of Health.

I am sure you will appreciate how disastrous the consequences can be if someone is labelled under the law as having a mental health disorder when this is not the case.

Please could you therefore take urgent action to make sure that this error is corrected in both electronic and paper documents produced by the Youth Justice Board, as well as arranging for a correction to appear in Magistrate.

Yours sincerely

Dr Charles Shepherd
Medical Adviser, ME Association
4 Top Angel
Buckingham MK18 1TH

 

PDF Statement 12: Report and update on Brian Ashworth and The Orchard Centre

Click to open PDF Statement 12

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Report and update on Brian Ashworth, The Orchard Centre, Bilston, West Midlands

Statement 12: Report and update on Brian Ashworth and The Orchard Centre, February 2008

Today we publish our latest report and update on the activities of Mr Brian Ashworth of The Orchard Centre, Bilston, West Midlands.  Read the full report and update here   

Since 1994, Brian and Jeanie Ashworth have operated in the area of representation for benefits and benefits appeals, largely for the ME and CFS patient community.  Mr Ashworth also involves himself in casework relating to education issues, child protection and MSBP casework and in other cases where there has been involvement of social services with families.  Mr Ashworth is also known to undertake immigration casework and work of a general legal nature; he also describes himself as a “private health practitioner”, a “complementary health practitioner” and a “trained counsellor”.

Some of Mr Ashworth’s clients have placed their advocacy and representation work with him on the understanding that he is a “lawyer” but Mr Ashworth is not a solicitor, a barrister or any form of legal executive.  Since 2006, Mr Ashworth has also operated under the name of B & J Legal Services.*

Over the past three years, we have been gathering information about the activities of The Orchard Centre.  We have identified significant concerns surrounding Mr Ashworth’s modus operandi and the standard of service he provides to his clients.

How can you help us?

To assist in taking things forward, we need to hear from anyone who has an outstanding case with Mr Ashworth in any field of advocacy and representation work – immigration, applications for benefits, benefit appeals and tribunals, housing, social services, educational, MSBP, Family Courts, matrimonial and general legal work and particularly, cases taken on since 2005 onwards.

We need to hear from those who have not been charged by Mr Ashworth for his services as well as from those who have paid money to him, however nominal, or have made “donations” or contributions towards his admin, travel or general expenses.

 

We need to hear from anyone who has been approached by Mr Ashworth seeking donations towards specific clients’ legal costs or for him to take up their case or for specific ventures such as “research projects” or for the running of The Orchard Centre, generally, whether as a client or otherwise.

 

We also need to hear from you if your casework has been concluded but you weren’t happy with the way in which your casework was being carried out, either at the time or subsequently, or if you consider you experienced misrepresentation by Mr Ashworth relating to the progress of your case or the outcome of a benefits appeal. We would also like to hear from you if you consider that Mr Ashworth has misrepresented his academic or professional qualifications to you or if you had been told that your case was part of a “class action”.

 

We need to hear from you if you have letters, paperwork, “Form of Authority” documents or electronic documents where Mr Ashworth has used the letters “LLB” after his name or if you had placed your representation work in Mr Ashworth’s hands on the understanding that he was a lawyer or a barrister, or a retired barrister or some kind of legal professional or if Mr Ashworth had been referred to you by others on that basis.

 

We also need to hear from anyone who has been given to understand that Mr Ashworth was a “trained counsellor”, a “complementary health practitioner”, or if he has “diagnosed” or “confirmed” medical or psychological illnesses or conditions using questionnaires or carried out “neurological tests” or carried out complementary health care treatments or consultations. Or if he has recommended or arranged for medical tests to be carried out by private laboratories and subsequently recommended treatments on the basis of his interpretation of the results of private or NHS tests or if he has advised or sought to advise your medical practitioner or your child’s medical practitioner on medical issues or on medications.*

 

Last but by no means least, we would like to hear from you if Mr Ashworth has sold you vitamins, minerals and other food supplements or complimentary health care products, and the claims he made for the efficacy of these products and if your experiences of his services were satisfactory or not.

 

*Neither Mr nor Mrs Ashworth are medical practitioners and they are not qualified to make or confirm medical diagnoses or produce medical assessments for their clients or for the agencies involved in their cases.

Read the full report and update here     

Part One
Bilston Resource Centre
Complaint to the Office of the Immigration Services Commissioner
“Law degrees” and the continued use of “LLB”
New cases brought to our attention over the past year

Part Two
“Class actions” and “the barrister in London”
The finance of class actions
Evidence of gross misrepresentation
Contact details for Trading Standards
How can you help us?

Part Three
Contacting organisations who have referred on to Mr Ashworth
Regional ME/CFS support organisations
Leger M.E.
National ME/CFS patient organisations
Local issues
Change of contact details for The Orchard Centre
Contact details for Suzy Chapman & Ciaran Farrell

How to contact

If you would like to discuss any of the issues raised in our statements or discuss your own experiences or if have any information which may assist us please contact us, in confidence:

Suzy Chapman & Ciaran Farrell

Email: Suzy Chapman

or telephone:

Ciaran Farrell
Tel/FAX: 0207 485 3404
28 Headcorn, 25 Malden Road, Kentish Town, London, NW5 3HZ

Contact Suzy Chapman if you would like a PDF version of Statement 12.

For further information and copies of our previous statements click here

*Mr Ashworth and his wife, Jeanie Ashworth, have used a variety of Trading As names for their operation, none of which are registered companies, registered charities, registered charitable organisations or any form of voluntary organisation.

The Orchard M.E. Centre
The Orchard M.E. Centre Benefits, Pensions and Appeals Service
The Orchard M.E. Centre Benefits & Appeals Service
The Orchard M.E. Centre Benefits & Appeals Advice
The Orchard Centre
The Orchard Centre Advocacy
The Orchard Centre for Fatigue Illnesses
The Orchard Centre for Fatigue Illnesses Benefits and appeals advice
The Orchard Fatigue Centre
The Orchard Centre Study of Fatigue Illnesses
The Orchard Centre Study of Fatigue Illnesses Education Service
The Orchard Study
The Orchard M.E. Study
The Orchard Study Centre
The Orchard Trust
The Orchard Centre for Training Coun [sic] [thought to be abbreviation of "Counsellors"]
The Orchard Centre Services
The Orchard Centre Services Appeals, Pensions & Legal
The Orchard Centre Services Appeals & Benefits Education & Legal Advice
B & J Legal Services

RiME Summary of APPG Meeting 22/1/08

RiME Summary of APPG Meeting 22/1/08

The meeting took place in Committee Room 17, and started at 4.00pm. Five MPs – Ian Gibson, Tony Wright, Andrew Stunell, Ann Keen + Kerry McCarthy – and the Countess of Mar – attended.

Minutes: I Paul Davis RiME said that what I said July 12 ’07 was not reported, or even reflected accurately, in the minutes. I read out the comments of 5 Group leaders which condemend the services in their respective areas. Two of the five (Kent + Birmingham) were not mentioned at all, the other three were not accurately reported. My statement, corroborated by three attendees, has been sent to the Chair + Secretariat; will the minutes be amended accordingly. They will.

If I remember correctly, the Chair of Sussex Group and Charles Shepherd MEA cut in, commending the work of Dr Mitchell. This had nothing to do with what I said at the last meeting. I simply read out a letter from the Chair of the Norfolk Group which raised concerns about the current services in Norfolk (Mitchell retired there Sept. ’06, according to Norfolk Group). Details and concerns re. the Norfolk Services can be found at www.erythos.com/RiME  clinics folder.

At this point Angela Kennedy drew people’s attention to her and Ian Mclachlan’s Petition; signed by over 500 it raised concerns about the nature of current ‘CFS/ME’ Services, that is the psycho-social approach. The Chair asked for a vote to have the statement included in the minutes. Why? The vote was 14/0 in favor.

Getting back to the minutes, I said this is not the first time that RiME’s comments have not been accurately reported or reflected eg July 2006: RiME’s comments re. services were reduced and diluted; important details omitted, altogether. Many appear to be of the view that the minutes are being manipulated and that MPs are being misled on issues such as services.

I also pointed out that the minutes say, ‘The Chair noted that the views of Mr Davis and those quoted in the letter did not seem to reflect those of the majority’, but that four people at the meeting do not recall this being said (this matter was not resolved at this point in time and I referred back to it at 5.00pm, asking that the statement be retracted. It was decided by a show of hands that it wouldn’t. I said in that case the matter will be referred to the Parliamentary Commissioner).

If I remember correctly, again, Tony Wright MP cut in at this point; he seemed annoyed at the points I had raised re. the minutes, people ‘harping on’, and said that Des Turner was sick and tired of the way he was treated at APPG meetings.

At this point, the Countess of Mar said something about, ‘I’m not listening to this’ and walked out.

Annette Barclay said she thought Paul Davis (RiME) was badly treated at the last meeting; she registered her disapproval of the heckling that he received and said at that moment the meeting broke down. Doris Jones 25% Group also said she felt Paul Davis hadn’t been well treated, and said that controversial subjects are not always mentioned in the minutes.

DWP: Barbara Robinson spoke about her discussions with the DWP and ATOS. She has approached them and hopes to meet them with ideas on how knowledge and training can be improved.

Shepherd said that without any DWP data to go on, following the introduction of the new guidance July 2007 all one has is anecdotes; more info. is required before asking a DWP Minister to return to the APPG; he suggested, meanwhile, a meeting with the DWP to discuss continuing concerns.

Gibson asked Charles Shepherd MEA if he would like an EDM on services. Shepherd says yes.

NHS Plus: Shepherd said the final version has not been seen. Dr Maddon was making some changes. Peter Spencer AfME was asked why Chris Clarke had signed them; he said Dr Maddon had not been able to prove this (which she had earlier claimed).

AfME Collaborative Conference: Peter Spencer AfME said he started the Conference by saying (1) proper debate must be carried out (2) there must be a commitment to learning from best practice (3) an over-dependence on some research data was destabilising research. Mary Jane Willows AYME said some were disappointed that certain people had not been invited; this was because some of her speakers had not been heard and this was more important.

Jane Colby TYMES said that David Salmon? had had a paper accepted by a medical journal; the paper questioned the data in another paper published by Peter White. White had claimed in a publication that PWCFS who had co-morbid or previous psychiatric history were more likely not to recover. Spencer reacted angrily to this saying ‘how can you do this to a professional… ‘

Ann Keen turned up just after 5.05pm. MP for Brentford and Isleworth since 1997 she had spent 25 years in nursing and worked with people with long term disabling conditions; she had seen ME first-hand and said she was aware of the problems patients faced (1) the need for early diagnosis (2) unsympathetic GPs (3) the lack of medical education (4) research or the lack of it – including epidemiology.

Point 4 – Good. I will drop Ms Keen a line thanking her for her interest but ask exactly what she is doing to affect this.

On the question of nomenclature, Ms Keen was comfortable with describing ME as neurological. And there was no objection to the term from the neurologist who was with her.

Willows made some points re. existing services as did Christine Harrison (BRAME). There were also comments on the proposed new service in Kirklees West Yorks. Colin Barton Sussex said most services are OK but need expanding; Joy Birdsey replied, ‘what planet are you on’? (Ed. we don’t get good reports on services in Sussex. Far from it). There was talk of setting up a meeting with Lord Darzi, Under Secretary of State at the DoH re. services.

 

Disclaimer: The above is compiled from mine and others’ scribbled notes. I cannot guarantee 100% accuracy.

Overview

Exchanges at recent meetings reflect divisions within the British ME Community. As ever, a few say, ‘sort it out and unite’. Unfortunately, it’s not that easy. There is a lot of history…

One of the tragedies of ME in the UK is that those organisations originally set up to represent people with ME have never been up to the task. Instead of doing just that, those who run them appear to be primarily motivated by (1) self-interest and (2) in a related way – often working on flawed projects with public officials and the Government which funds them. But it goes deeper than this; they have let us down so badly. Unwisely, the aforementioned have colluded with the Government in projects which were never about G93.3 ME but loosely defined CFS. The results in terms of diagnosis, treatment, research and welfare for ME patients are clear to see. Take the CMO process/Report; this was not about G93.3, and ME patients are now suffering its results in terms of services. Time and again, ME people contact me and say, ‘but this is not about ME’. Please note that a number of ME parties, notably the 25% Group, would not sign; the latter’s reasons were to do with the fact that it didn’t recognise G93.3 and recommended psychiatric models of treatment ie GE/CBT.

The APPG then, primarily a vehicle for promoting Govt policy, had ready-made allies at its inception 1999. The influence which the MEA and AfME have within the Group is totally disproportionate to the size of their memberships, which have plummeted in recent years (they probably wouldn’t represent 5% of ME patients currently).

RiME is about G93.3 ME. A person said to me recently ‘can’t you find middle ground with the likes of AfME… ‘. I tried to explain that this was not possible. In order to do that, RiME would have to shift away from the G93.3 classification and the Canadian Criteria which describes a neuro-immune-endocrine-vascular illness. I’m not prepared to do that and say to such people, ‘don’t ask RiME to be less than what it is’.

One difference between us and the likes of AfME, MEA, AYME… is our view of ‘CFS/ME’ services. We believe that the large majority with G93.3 ME don’t want them; they say vica-versa. There is a difference, though; our position is backed up with no fewer than 20+ pages of evidence (see website – clinics + letters); where is theirs? I made this point at the July ’07 meeting; needless to say, it was omitted from the minutes. I wrote to AfME + MEA again on this Oct. 2007 (clinics folder – letters to MEA, AfME); they haven’t replied.

Meantime, what about research? It has barely featured at recent meetings. Are MPs being misled into thinking that ME patients are getting effective treatment via the clinics and, therefore, it is not urgent? This is what they might think reading the manipulated APPG minutes? Shortly, RiME will be launching the RiME Referendum: a letter will go to each of the 646 MPs asking whether or not they think the Government should be funding research into the aetiology and pathogenesis of ME. I hope (health permitting) to report the results at an APPG meeting, and ask what the APPG is doing in this area.

Paul Davis

Email RiME

Campaigning for Research into ME (RiME)

We welcome unused postage stamps.

Justice for Families, January 2008

Email John Hemming, MP

Justice for Families

January 2008.
Apologies for the short report (apart from Ali’s Media report) I am very busy at the moment. We have been making quite a bit of progress in this month. My personal priority has been to draft some proposed new clauses to open up further the Family Courts. The state has responded in part by offering more anonymous judgments. What is needed, however, is a facility for parents to give details of miscarriages of justice with the reports from the family courts even if they are redacted to remove the names of children.

I am currently in discussions with a number of political groups in parliament with a view to obtaining the widest support for these proposals.

I would like to find a way of challenging S31 of the 89 Act, but the Bill is structured in a manner that makes this impossible.

JFF internally continues to work to improve case support and identify more volunteers. Some interesting cases have now hit the Court of Appeal.

In terms of campaigning we hope to do some street theatre outside the RCJ. This will highlight the way in which newborn babies are removed from mothers on the basis of expensive unreliable “expert” opinion.

Alison’s Media Report for January
Thanks to Ali for this.