ONE CLICK CFS/ME NICE Judicial Review: Campaign Update 3

One Click Judicial Review – The CFS/ME NICE Guidelines: Campaign Update 3

As previously announced by One Click, we have now reached the target of £10,250 set us by the Legal Services Commission (LSC http://www.legalservices.gov.uk/ ) to attempt to challenge the CFS/ME NICE Guidelines in the High Court by Judicial Review. One Click would like to thank everybody from around the world who contributed.

Please see Very Simply We Did It

Please send no more donations to the fund.

We are expecting a decision from the LSC any day. The LSC is all too well aware of the urgency of this case and the fact  that we have live proceedings afoot. We would like to thank the LSC for all the assistance provided with this case to date.

The One Click Group

30 January 2008

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What It Is: Judicial Review (http://tinyurl.com/ywg7s5 )
CFS/ME NICE Guidelines (http://tinyurl.com/ysxa8v )
Who Will Conduct It: Saunders Solicitors LLP
(http://www.saunders.co.uk )
Counsel Kate Marcus from Doughty Street Chambers
(http://www.doughtystreet.co.uk )
Why It’s Necessary: One Click Legal Appeal
(http://tinyurl.com/35bqgk )

The CFS/ME NICE Guidelines have been produced by a process of documented (http://tinyurl.com/ygweub) unethical political and medical manipulation of due process.

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This information is available on THE ONE CLICK GROUP website
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Summary of MEA board of trustees meeting: Thursday 24 January 2008

NB: This is a summary of the Board meeting – not the actual minutes.
ME Association News page

This is a brief summary of key issues that were discussed at The ME Association Board of Trustees meeting held in Buckingham on Thursday 24 January 2008.

The summary also covers some matters that were discussed at an informal meeting of three trustees (NR; CS; BS), Gill Briody and Tony Britton the day before and over dinner the night before.

On Thursday trustees joined members of staff and office volunteers for a delayed Christmas lunch.

PRESENT

Trustees:
Ewan Dale
Mark Douglas
Rick Osman (Vice Chairman)
Charles Shepherd
Barbara Stafford

Neil Riley (Chairman) joined the meeting by telephone link up from home.

Staff:
Gill Briody (Company Secretary)
Tony Britton (Publicity Manager)

Apologies received from Vivienne Sutton (Associate Trustee)

FINANCES, STAFF AND PREMISES

Due to the likely termination of our current rental agreement there is a strong possibility that The MEA will have to relocate to new premises in Buckingham in the very near future. The previous day a small group looked at two possible locations and reported back. Trustees agreed that there were two options available at one of the premises that are appropriate to our needs and budget and agreed to pursue them further.

Otherwise, no significant developments to report.

The underlying financial situation continues to remain fairly stable and we are still meeting our medium term target of having sufficient funds in the unrestricted reserve account to cover all administrative and salary expenditure for at least a full financial year. We do, however, have just over 400 members who pay by standing order and no longer pay the current membership fee despite repeated reminders.

A summary of the audited accounts for the year ending December 2006 can be found in the January issue of ME Essential magazine. A full copy of the accounts can be sent to members on request. Trustees agreed that subject to expected changes to the legal status of charitable companies we should move from producing a full audit of the annual accounts to a simpler and slightly cheaper accountant’s report for the year ending December 2008.

Trustees completed work on new guidance relating to trustee expenses.

MEA ANNUAL GENERAL MEETING AND TRUSTEE ELECTIONS

Arrangements for the AGM on Saturday 19 April were formalised. This will take place at 2pm. The venue is once again The Littlebury Hotel, Bicester. Further details can be found in the January issue of ME Essential magazine.

Two current trustees – Neil Riley and Rick Osman – will be standing for re-election at the AGM. A voting paper can be found in the January issue of ME Essential magazine. Voting papers must be returned to Head Office by midday of Friday 11 April at the very latest.

FUNDRAISING

Walking The Amazon:

Barbara Stafford updated trustees on all the various initiatives being planned in association with Walking the Amazon – a two year event that is already raising funds for the MEA and five other national charities. Money raised for the MEA will be ring-fenced for research purposes and will be used to support our aim of setting up a national tissue bank and post mortem facility for ME/CFS. Tickets can still be purchased for the first event – a send off party for Ned and Luke that is going to be held on board HMS President, a large boat moored on the Thames Embankment – on the night of Saturday 2nd February. More details about this event can be found on the MEA website or in the January issue of ME Essential. Tickets for this event can be obtained from Barbara Stafford. The walk itself is due to start at the beginning of April.

Walking The Amazon website: www.walkingtheamazon.com

Mobile phone returns:

Mark Douglas reported that this new fundraising scheme is continuing to do well. Anyone with an unwanted mobile phone can still request a prepaid envelope from Head Office and then return their phone to Greener Solutions in Surrey. There is a free courier service available for 20 phones or more!.

A number of other possible fundraising initiatives for 2008 were discussed and trustees agreed to set up a small sub-group to concentrate on fundraising matters.

MEA FUNDED RESEARCH AND OTHER RESEARCH ISSUES

Professor John Gow’s study into gene expression at Glasgow Caledonian University:

A new research assistant has been appointed and work is running according to plan.

Collaboration with new research proposal:

Having been offered the opportunity to do so by an academic research team, trustees agreed that the MEA should collaborate in a new research proposal involving patient feedback that is being submitted for funding.

ME Observatory:

Charles Shepherd reported on a meeting of the ME Observatory Steering Group held on 11 January at which progress on the six research studies being carried out with funding from the National Lottery was discussed. There is still a need to recruit more people from minority ethnic communities to help with one of the studies. More information can be found in the ME Observatory announcement in the January news archive on the MEA website: http://www.meassociation.org.uk.

PRIME Project:

Charles Shepherd will be attending the next meeting of the Steering Group.

Research meetings

The MEA is adding its support and/or presence to research meetings in Southampton, Cambridge and London over the coming months that are designed to promote and explain the biomedical model of ME/CFS. Further details on these three conferences can be found on the MEA website (>> Events Calendar) and in the January issue of ME Essential. Most of these meetings are open to both health professionals and people with ME/CFS.

PARLIAMENTARY ACTIVITY

Adjournment debate on ME/CFS

The attempt by John Bercow MP to secure a place in the parliamentary ballot for adjournment debates has not yet been successful. John Bercow has informed us that he will continue to enter the ballots.

All Party Parliamentary Group (APPG) meeting on Tuesday 22 January

Charles Shepherd and Tony Britton reported on the APPG meeting held two days earlier.

The APPG received updated reports on a number of current issues of concern: DWP benefit guidance; NHS Plus literature, NHS services etc.

The main part of the meeting was devoted to a presentation from Ann Keen MP, Parliamentary Under Secretary at the Department of Health. Afterwards, Ann Keen answered questions from MPs and members of the public.

A summary on this meeting can be found on the MEA website (>> News). The MEA is also preparing the minutes this time and these will be published later.

Scottish Cross Party Group:

Ewan Dale reported on a meeting of the CPG that was held on Wednesday 23 January. Part of this meeting was devoted to discussion on proposed new guidance on ME/CFS for Scottish doctors that will cover diagnosis and management.

NHS PLUS:

Trustees discussed the outcome of correspondence that had been sent to Dr Ira Madan by Neil Riley on behalf of the various charities and groups that agreed a joint response to the content of the NHS Plus leaflets on occupational health issues. The outcome is that the points raised by the charities have been considered by Dr Madan and she is currently in the process of preparing revised versions of all the three leaflets. Further information on the revision will appear on the MEA website once we hear back again from Dr Madan.

NHS SERVICES

The MEA is keen to monitor the development of new clinical services that are being planned or brought into operation by PCTs as a result of the NICE guideline. We have prepared a pilot questionnaire to go out to those involved in the development process. Our first report back has come from the new service being planned for Portsmouth. A copy of the questionnaire can be found in the January issue of ME Essential.

MEDICAL RESEARCH COUNCIL (MRC)

As no reply has yet been received to the letter that was sent in December to Professor Leszec Borysiewicz – new Chief Executive at the MRC – regarding the absence of MRC funding for biomedical research, a further letter will be sent. A copy of the MEA letter can be found on the MEA website in the December news archive.

NICE GUIDELINE ON ME/CFS

Trustees discussed what form of multidisciplinary management option we might put forward as an alternative to the NICE management recommendations that are largely based around the use of cognitive behaviour therapy (CBT) and graded exercise. As part of this initiative a questionnaire on all aspects of management will be prepared for the April issue of ME Essential.

ME CONNECT TELEPHONE INFORMATION AND SUPPORT SERVICE

All is running smoothly with both the telephone and email service. Volunteers recently had a training session on CBT and a new ME Connect leaflet on Counselling is being produced. A new monitoring procedure for counsellors who advertise in ME Essential was also approved.

MEA LITERATURE, ME ESSENTIAL MAGAZINE AND MEA WEBSITE

New MEA literature now available includes leaflets on CBT and Employment. We have a revised version of ‘ME/CFS – Your Questions Answered’. and a revised Briefing Paper on Current Concerns’ for the benefit of the media and politicians. A new leaflet on Counselling is being prepared by ME Connect.

Trustees discussed the introduction of MEA website links to commercial companies.

DATE OF NEXT BOARD MEETING

This will be held on Friday 18 April 2008. A further short meeting will be held on the morning of Saturday 19 April – before the AGM takes place in the afternoon.

NB: This is a summary of the Board meeting – not the actual minutes.

29 January 2008

 

Revised version of APPG meeting, January 22 – a personal summary, C Shepherd

Issued by Dr Charles Shepherd

28 January 2008

NB: This revised version contains an addition to the list of MPs and national patient group representatives who were present as well as an item that came under AOB. Apologies to those whose names were omitted first time round. CS

MAY BE REPOSTED

This is a short personal summary/sketch of key points to emerge from the All Party Parliamentary Group (APPG) meeting held on Tuesday 22 January 2008

A more detailed account – in the form of the official minutes being prepared by The ME Association – will follow later.

VENUE

Committee Room 17, House of Commons

ATTENDANCE

Parliamentary:

Ian Gibson MP
Kerry McCarthy MP
Andrew Stunell MP
Tony Wright MP
Countess of Mar

There were numerous apologies from MPs as other important meetings were taking place, including a debate in the House of Commons chamber on the Energy Bill.

Secretariat:

AfME: Sir Peter Spencer and Heather Walker
MEA: Tony Britton and Dr Charles Shepherd

National ME charity and ME organisation representatives:

25% Group: Doris Jones
AYME: Mary Jane Willows
BRAME: Christine Harrison
MERUK: Sue Waddle
RIME: Paul Davis
Tymes Trust: Jane Colby

There were also around 20 others present: parliamentary assistants; local group representatives; people with ME and carers. A full list of those attending will appear in the minutes.

In the absence of Des Turner, who was taking part in the Energy Bill debate, the meeting was chaired by Ian Gibson with his usual good humour and tolerance.

MINUTES OF PREVIOUS MEETING

The meeting opened with a prolonged and at times quite heated discussion relating to disagreements with the previous APPG minutes that had been raised in letters from Paul Davis and Angela Kennedy – both of whom spoke.

MATTERS ARISING AND ROUTINE BUSINESS

Having been notified that Ann Keen, Parliamentary Under Secretary at the Department of Health, would be late the secretariat provided a brief update on current ‘hot topics’. A background briefing paper on these ‘hot topics’, prepared by the MEA, was circulated to those present.

Adjournment debate: CS reported that John Bercow MP had not been successful in achieving a slot through the December ballot. John Bercow is going to keep trying as the opportunity arises.

DWP medical guidance on ME/CFS: CS reported that without any DWP statistics to go by following the introduction of this new guidance in July 2007 all we have are continuing anecdotal reports, and that more information on benefit problems is really required before asking a DWP minister to return to the APPG. As an alternative, it was decided to consider the possibility of arranging a meeting with the DWP to discuss our continuing concerns over benefit problems.

NHS Plus leaflets on Occupational Health: CS reported that Dr Ira Madan had written back to the MEA on January 11 to say that she was considering the points made in the joint charity response submitted by the MEA and that revised versions of the three leaflets were now being prepared. PS was hopeful that the amendments would meet the concerns and objections that have been expressed.

NHS Collaborative Conference: PS and MJW gave a positive report on this conference about which concerns had been expressed at the last APPG meeting.

PREPARATION FOR PRESENTATION BY THE MINISTER

With no sign of the Minister, Ian Gibson felt that we should move on and agree a small number of key points that should be raised in the limited amount of time we were likely to have with the Minister and what we should ask for at the end in order to keep the momentum going – otherwise we were going to miss a marvellous opportunity to contribute to government policy making..

It was decided to concentrate on the issue of NHS services – in particular problems with existing services (ie financial cutbacks and closures following the end of the £8.5 million ring fenced funding from the DoH) and new services that are being introduced or proposed following the NICE guideline (ie early indications that PCTs may be opting for services that are not physician led, offer no diagnostic service, and concentrate on CBT and GET). And as Lord Darzi would be completing his work on the long term neurological conditions chapter of his NHS review fairly shortly, we should be seeking an urgent meeting with him to discuss ME services.

Ian Gibson suggested that it may be useful to prepare another Early Day Motion (EDM) – this time concentrating on services.

Ian Gibson also suggested that the time may have come for the government to appoint an ‘ME Tsar’ who can deal with all the various issues relating to ME – in the same way that high profile diseases such as cancer and heart disease now have their own government health tsars.

MINISTERIAL PRESENTATION FROM ANN KEEN MP

[NB: Ann Keen entered parliament in May 1997 as member for Brentford and Isleworth]

Ann Keen and her entourage arrived shortly after 5pm.

Accompanying her was Dr Chris Clough – a consultant neurologist from King’s College Hospital, London – who is also a member of the External Reference Group for the National Service Framework in long term neurological conditions.

Ann Keen started off by explaining that she had spent 25 years in nursing – much of this in the community working with people who have long term disabling conditions.

She clearly understood and sympathised with many of the well known problems facing people with ME:

a Unsympathetic doctors
b Lack of medical education and training on ME
c The need for early diagnosis
d Good quality management that covers all aspects of the illness
e Research, or lack of it, including the need for better epidemiological data so that health providers know the full extent and severity of the problem

I doubt if anyone would disagree with the aspirations that Ann Keen expressed when it comes to improving the situation for people with ME.

Whether the Minister can actually deliver any of these changes remains to be seen. And while accepting that local decisions about the funding of service provision could create problems, there was no indication that the DoH was going to make any further special case for ME or be more proactive in telling PCTs what to do.

On the question of classification, Ann Keen was quite happy to use the term ‘neurological’ as the best way of describing ME – which she did on several occasions . And there was no objection to the term neurological from the neurologist who was present. Could this actually signal the end of the road for the dreadful term ‘biopsychosocial illness, so favoured by the psychiatrists and NICE?

Key points relating to existing services and new services were put by MJW (as PS had to leave and catch a train to Edinburgh), CS and Christine Harrison (BRAME).

Ann Keen said she was happy to stay on and answer a few questions – which she did. Question time included some comments on the proposed new service in Kirklees, West Yorkshire – where the impetus has come from a rise in the number of neurological referrals.

The meeting concluded by thanking Ann Keen for coming and offering to try and set up a meeting with Lord Darzi, Parliamentary Under Secretary of State at the DoH, to discuss the whole issue of NHS service provision for people with ME. More information on this proposed meeting. and the EDM, will appear on the MEA website as it becomes available.

ANY OTHER BUSINESS

Jane Colby presented a paper, through the Chair Ian Gibson, that contains a critical evaluation of some of the research input that comes from psychiatry. A copy of the paper was given to the Minister.

CLOSE OF MEETING

The meeting closed shortly before 6pm.

The topic and date of the next meeting has still to be arranged.

Ann Keen website

Personal comment: 

[Ed: The text of this section has been omitted at the discretion of the publisher, ME agenda.  Please refer to notes at top of posting  APPG meeting, January 22 - a personal summary by Dr Charles Shepherd ]

Dr Charles Shepherd
Hon Medical Adviser, The ME Association
25 January 2008

NICE CFS/ME Judicial Review clarification

I notice from the site stats that someone has been searching Google using the field “ME Association take NICE to court”.

To clarify – it is THE ONE CLICK GROUP  that has launched the legal challenge against the NICE CFS/ME Guidelines.

Neither The ME Association nor Action for ME are supporting this legal campaign.

APPG meeting, January 22 – a personal summary by Dr Charles Shepherd

ME agenda notes:

1] Please note that the following summary of the January APPG meeting has been published and circulated as a “personal summary” by Dr Charles Shepherd, although it  has been  signed in  Dr Shepherd’s capacity as Hon Medical Adviser, The ME Association.  The official Minutes of the meeting which took place on 22 January will be published later.

2]  At the end of this “personal summary” Dr Shepherd has included a section headed “Personal comment”.  The text of this section has been omitted from the copy below at the discretion of the publisher, ME agenda.  The owner of this site is not prepared to give a platform to Dr Shepherd for publishing comment of an inflammatory nature.  The summary of this APPG meeting is signed by Dr Shepherd in his capacity as Hon Medical Adviser, The ME Association and is published as such on the ME Association’s website.  If Dr Shepherd wishes to publish personal opinion and comment of any nature it is considered that he should do so separately and on a purely personal basis and not as part of a summary published in the name of The ME Association.  To do otherwise is considered an abuse of Dr Shepherd’s position as Hon Medical Adviser to the ME Association and member of the Board of Trustees.

3] The organisation MERUK were represented at the meeting by Mrs Sue Waddle.

 

APPG meeting, January 22 – a personal summary

by Dr Charles Shepherd
Hon Medical Adviser, The ME Association
25 January 2008

This is a short personal summary/sketch of key points to emerge from the All Party Parliamentary Group (APPG) meeting held on Tuesday 22 January 2008

A more detailed account – in the form of the official minutes being prepared by The ME Association – will follow later.

VENUE

Committee Room 17, House of Commons

ATTENDANCE

Parliamentary:

Ian Gibson MP
Tony Wright MP
Andrew Stunell MP
Kerry McCarthy MP
Countess of Mar

There were numerous apologies from MPs as other important meetings were taking place, including a debate in the House of Commons chamber on the Energy Bill.

Secretariat:

AfME: Sir Peter Spencer and Heather Walker
MEA: Tony Britton and Dr Charles Shepherd

National ME charity and ME organisation representatives:

25% Group: Doris Jones
AYME: Mary Jane Willows
BRAME: Christine Harrison
RIME: Paul Davis
Tymes Trust: Jane Colby

There were also around 20 others present: parliamentary assistants; local group representatives; people with ME and carers. A full list of those attending will appear in the minutes.

In the absence of Des Turner, who was taking part in the Energy Bill debate, the meeting was chaired by Ian Gibson with his usual good humour and tolerance.

MINUTES OF PREVIOUS MEETING

The meeting opened with a prolonged and at times quite heated discussion relating to disagreements with the previous APPG minutes that had been raised in letters from Paul Davies and Angela Kennedy – both of whom spoke.

MATTERS ARISING AND ROUTINE BUSINESS

Having been notified that Ann Keen, Parliamentary Under Secretary at the Department of Health, would be late the secretariat provided a brief update on current ‘hot topics’. A background briefing paper on these ‘hot topics’, prepared by the MEA, was circulated to those present.

Adjournment debate: CS reported that John Bercow MP had not been successful in achieving a slot through the December ballot. John Bercow is going to keep trying as the opportunity arises.

DWP medical guidance on ME/CFS: CS reported that without any DWP statistics to go by following the introduction of this new guidance in July 2007 all we have are continuing anecdotal reports, and that more information on benefit problems is really required before asking a DWP minister to return to the APPG. As an alternative, it was decided to consider the possibility of arranging a meeting with the DWP to discuss our continuing concerns over benefit problems.

NHS Plus leaflets on Occupational Health: CS reported that Dr Ira Madan had written back to the MEA on January 11 to say that she was considering the points made in the joint charity response submitted by the MEA and that revised versions of the three leaflets were now being prepared. PS was hopeful that the amendments would meet the concerns and objections that have been expressed.

NHS Collaborative Conference: PS and MJW gave a positive report on this conference about which concerns had been expressed at the last APPG meeting.

PREPARATION FOR PRESENTATION BY THE MINISTER

With no sign of the minister, Ian Gibson felt that we should move on and agree a small number of key points that should be raised in the limited amount of time we were likely to have with the minister and what we should ask for at the end in order to keep the momentum going – otherwise we were going to miss a marvellous opportunity to contribute to government policy-making.

It was decided to concentrate on the issue of NHS services – in particular problems with existing services (ie financial cutbacks and closures following the end of the ring fenced funding from the DoH) and new services that are being introduced or proposed following the NICE guideline (ie early indications that PCTs may be opting for services that are not physician-led, offer no diagnostic service, and concentrate on CBT and GET). And? as Lord Darzi would be completing his work on the long term neurological conditions chapter of his NHS review shortly, we should be seeking an urgent meeting with him to discuss ME services.

Ian Gibson suggested that it may be useful to prepare another Early Day Motion (EDM) – this time concentrating on services.

Ian Gibson also suggested that the time may have come for the government to appoint an ‘ME Tsar’ who can deal with all the various issues relating to ME – in the same way that high profile diseases such as cancer and heart disease now have their own government health tsars.

MINISTERIAL PRESENTATION FROM ANN KEEN MP

[Ann Keen entered parliament in May 1997 as member for Brentford and Isleworth]

Ann Keen and her entourage arrived shortly after 5pm. Accompanying her was Dr Chris Clough – a consultant neurologist from King’s College Hospital, London who is also a member of the External Reference Group for the National Service Framework in long term neurological conditions.

Ann Keen started off by explaining that she had spent 25 years in nursing – much of this in the community working with people who have long term disabling conditions.

She clearly understood and sympathised with many of the well known problems facing people with ME:

a Unsympathetic doctors
b Lack of medical education on ME
c The need for early diagnosis
d Good quality management that covers all aspects of the illness
e Research, or lack of it, including the need for better epidemiological data so that health providers know the full extent and severity of the problem

I doubt if anyone would disagree with the aspirations that Ann Keen expressed when it comes to improving the situation for people with ME.

Whether the minister can actually deliver any of these changes remains to be seen. And while accepting that local decisions about the funding of service provision could create problems there was no indication that the DoH was going to make any further special case for ME or be more proactive in telling PCTs what to do.

On the question of classification, Ann Keen was quite happy to use the term ‘neurological’ as the best way of describing ME – which she did on several occasions . And there was no objection to the term neurological from the neurologist who was present. Could this actually signal the end of the road for the dreadful term ‘biopsychosocial illness, so favoured by the psychiatrists and NICE?

Key points relating to existing services and new services were put by MJW (as PS had to leave and catch a train to Edinburgh), CS and Christine Harrison (BRAME).

Ann Keen said she was happy to stay on and answer a few questions – which she did. Question time included some comments on the proposed new service in Kirklees, West Yorkshire – where the impetus has come from a rise in the number of neurological referrals.

The meeting concluded by thanking Ann Keen for coming and offering to try and set up a meeting with Lord Darzi, Parliamentary Under Secretary of State at the DoH, to discuss the whole issue of NHS service provision for people with ME. More information on this proposed meeting will appear on the MEA website as it becomes available.

CLOSE OF MEETING

The meeting closed shortly before 6pm.

The topic and date of the next meeting has still to be arranged.

Ann Keen website

Personal comment:  [Ed: The text of this section has been omitted at the discretion of the publisher, ME agenda.  Please refer to note at top of posting.]

Dr Charles Shepherd
Hon Medical Adviser, The ME Association
25 January 2008

Reminder: APPG on ME meeting, today, Tuesday 22 January

A reminder that a meeting of the All Party Parliamentary Group on ME is being held today, in a House of Commons Committee Room and that members of the public are permitted to attend this meeting. 

Ann Keen, MP, Parliamentary Under Secretary of State for Health Services has agreed to speak to the group during the first half of the meeting.

APPG on ME meeting

Date: Tuesday 22 January 2008
Time: 4.00pm-5.30pm
Location: Committee Room 17, House of Commons

The Agenda for this meeting can be read here
 

Agenda for Cross-Party Group on ME, Edinburgh, January 23

Agenda for Cross-Party Group on ME, Edinburgh, January 23

The first meeting of the reformed Cross Party Group on ME in the Scottish Parliament will be held on Wednesday, January 23 – in Committee Room 3 at the Scottish Parliament. It will start at 1pm and is expected to last 90 minutes.

AGENDA

Convenor’s welcome

Apologies

Minutes of 14th March 2007

Matters arising

Update from M.E. Committee meeting – 23rd October and 5th December 2007

Legacy Paper

Scoping Exercise and Needs Assessment

GP guideline

Research – Barcelona and San Sebastian

NICE Guidelines

Gibson Report

Any other business

Date of next meeting – 23rd April 2008

ONE CLICK CFS/ME NICE Judicial Review: We did it!

Campaign Music: Ev’ry Valley Shall Be Exalted
George Friedrich Händel
“Messiah” – John Tiranno
Listen and read this

The One Click CFS/ME NICE Judicial Review

One Click Group Director Jane Bryant writes:

Summary

Saunders Solicitors LLP have confirmed to One Click that we have reached our target of £10,250 set by the Legal Services Commission as their requested contribution to attempt to challenge the appalling and much derided CFS/ME NICE Guidelines in the High Court.

Many thanks are due to every person and every organisation around the world that has honoured their commitment and made their pledge for this historic case that is set to make legal history and precedent in more ways than one.

Introduction

How can one possibly encapsulate the work, the commitment, the honour and the sheer integrity of so many people from the four corners of the earth in the space of four months since One Click launched the CFS/ME NICE Guidelines Judicial Review in September 2007? The sheer grit? The determination? The fair dealing?

The few short words that I pen to you today at the close of the One Click Legal Appeal to challenge the appalling CFS/ME NICE Guidelines in the High Court could never do proper justice to what we have all together achieved. Read the rest of this entry »

MEA announces “Associate Trusteeship”: Comment

From Suzy Chapman & Ciaran Farrell
20 January 2008

In the January issue of ME Essential magazine, published this week, the ME Association announces the concept of “Associate trusteeship”.

MEA Chair, Neil Riley, presents “Associate trusteeship” as a means by which the charity might “expand the variety of skills available” and writes that “in order to facilitate this, [the MEA] has decided to trial a way of involving volunteers in the running of the Association on an informal basis.”

Mr Riley goes on to state:

“At present, trustees are either co-opted or formally elected to the Board. This system works well but it has not always been easy for members to commit themselves to give the time involved and the active participation required as trustees. Many members are too ill, some cannot travel, others have work or family commitments. This has limited the field of talented candidates who would otherwise have brought new skills and experience.

“The Board has therefore decided to try a system of “associate trusteeship”. It is envisaged that the associate will contribute to the discussions of the Board and be involved in projects undertaken by the charity. This will be an unofficial role as it will carry with it no voting rights in any decision taken by the Board. There will be no requirement for the associate to attend all Board Meetings. There will be no commitment on either the associate or the charity to continue the arrangement.

“This is only a trial and the Board will monitor closely how it works and the benefits that ensue. If it is successful then the system of “associate trusteeship” could be formalised and incorporated in the Articles of Association of the Charity, which are the rules which govern the running of the charity.”

Neil Riley, Chairman of The ME Association
ME Essential: Issue 105, January 2008, Page 4.
 
 
Last year, the MEA introduced a number of changes to its Mem & Arts, which included reducing the number of trustees that make up its Board from a maximum of twelve down to eight and reducing the minimum number of Board members from seven to five; the number required for a quorum for Board of Trustees meetings was also reduced from four to three.

There are currently six trustees on the Board. If existing Board members continue to stand for re-election when their turn to step down from the Board comes round under the “one third retirement rotation” clause, this reduction in the maximum number of trustees able to serve at any one time severely limits opportunities for “new blood” to join the Board through the AGM membership election process. It also increases the likelihood of a run off election where there are more candidates standing than seats available – in this situation, retiring trustees wishing to stand for re-election would be forced to compete against new candidates in order to retain their seats.

In accordance with its Mem & Arts, the Board also has provision to appoint up to two trustees a year though the process of co-option in between its annual AGM elections. The MEA favours appointing new trustees under this system since through the process of co-option it can retain tighter control over the make up of its Board.

In the summary of the November 2007 Board meeting, which is also published in the magazine, it is reported that several people had expressed an interest in becoming an MEA trustee and that three of these had met with the Board. Interestingly, none of those potential candidates who have met with the Board are standing for election this coming April alongside Mr Neil Riley and Mr Rick Osman – the two existing trustees due to retire, by rotation, at the forthcoming AGM and who are going round again – theirs are the only names which have gone through to the ballot paper.

Have some or all of those individuals who have had “informal discussions” about the role and responsibilities of a trustee been actively discouraged from putting themselves forward for election in April, or have they been persuaded to wait until after the AGM and apply to join the Board as co-optees or have some of them been offered “associate trusteeship” instead?

It isn’t clear from Mr Riley’s article how the Board intends to source candidates for these “associate trusteeships”. No information has been given about the process through which they will be recruited or how the skills they might bring to the organisation are to be identified and assessed; there are no details at all about how interested individuals should set about applying for these positions nor any invitation to discuss these positions further with the MEA.

No point of contact is given. So have individuals already been appointed to these “associate trusteeships” and if this is the case, who are they and how were they approached?

It isn’t clear whether “associates” are to be drawn from within the ME patient/carer community, itself, or whether they will be sourced from outside the ME community – for example, retired or semi retired or former professionals with a variety of backgrounds and skills but who do not necessarily have personal experience of the illness themselves.

It isn’t clear, either, through what channels these individuals would relate to the Board, what type of discussions they would be anticipated to input into and from what areas of discussion they might be excluded; what types of task might be delegated to them and who would be responsible for their supervision.

It isn’t clear whether they are to receive any training or induction in the work assigned to them or what documents, reports, minutes, other materials or access to staff will be made available to them in order that they are fully informed in the areas in which their assistance is required or for which their expertise and views are being sought – in other words, are they going to be provided with a proper and adequate brief in terms of both their role and the job they are to undertake and materials and human resources made available to them in order to discharge their role and perform the job for which they were appointed?

It isn’t clear, either, whether it would be anticipated that those holding these positions might attend some Board meetings and on what basis they would attend – as passive observers or as active participants in Board level discussions or in order only to report on specific projects to which they have been assigned?

We are told only that these positions would not carry with them the right to vote at Board level.

So how does the MEA envisage these appointments functioning within the framework of the organisation as a whole and within the day to day business of the Board responsible for running the MEA, for forming its policies and administering its funds?

We look forward to these issues being clarified by the MEA, for if insufficient consideration has been given to the matters of roles, responsibilities, lines of accountability and channels of communication then we foresee disaster.

There are also other important considerations. What are the implications for the status of these “associate trusteeships”. The MEA is a Charitable Company so its trustees are also its company directors; the names of the directors must be listed in the Report and Accounts submitted annually to Companies House and to the Charity Commission. Both charity trustees and directors of a Charitable Company have specifically defined legal obligations and responsibilities under both Charity and Company Law.

Should the positions held by these informal “volunteers” even be given a designation containing the word “trusteeship”? Has this concept been discussed by the Board with the Charity Commission? Would the MEA be permitted to seek to incorporate such a change into its Mem & Arts by formalising and incorporating this system into its Articles of Association?

One of the reasons given by Mr Riley for the introduction of “associate trusteeships” is that “it has not always been easy for members to commit themselves to give the time involved and the active participation required as trustees. Many members are too ill, some cannot travel, others have work or family commitments.”

The health status of those whose interests are represented by patient and campaigning organisations operating in the area of ME undoubtedly presents barriers to their becoming involved in the running of organisations at board of trustee/management committee level.

A few months ago, a former ME Association trustee who had served on the Board during the Val Hockey era told one of us that in their opinion patient and campaigning organisations should be run primarily by those who are not, themselves, affected by ME or caring for those with ME and furthermore that non membership organisations were the way to go because “members get in the way”.

Coming from an ME sufferer, themselves, this sent a cold shiver down the spine.

We do not believe that “members get in the way”.

We do believe that the policies of a patient organisation should be informed through consultation with the patient community it has been set up to represent and that an organisation should be expected to put in place whatever is required to enable its membership to play an active role in its management and in the development of its policies and that its trustees should be elected to the Board through democratic processes, otherwise we slide further and further down the slippery slope that AfME has already taken.

If the introduction of “associate trusteeships” is the MEA’s response to the problem of recruiting sufficient numbers of trustees of the calibre required, why is the MEA not prepared, instead, to put into practice the means by which those who do possess the necessary skills but who have special needs due to ill health and disability, are enabled to fully participate and play an effective part in the running of this organisation? In practice, the current Board has deployed a shocking level of disability discrimination in the past against at least one former trustee whose integration into the Board they did not wish to facilitate and it is clear that the Board has very selective policies towards accommodating the needs of some of its disabled colleagues.

The shortfall in manpower and skills identified by the Board has been exacerbated by the Board’s own decision to reduce the overall number of trustees that can join its ranks. Is the Board now seeking to make up that shortfall by recruiting “volunteers” on an informal basis, in ill-defined roles, to become involved in unspecified projects and to input into unspecified discussions, who have not been elected to these positions by the membership, who have no boardroom vote nor security of tenure, and who, accordingly, can be “hired and fired”, as the existing Board sees fit, and readily dispensed with if and when they start to challenge the Board’s policies?

Does the Board now intend to steer all prospective AGM election candidates into “associate trusteeship” where they will serve as a pool of casual labour or expertise from which potential co-optees might be plucked, if they are perceived as possessing useful skills to bring to the table and are considered suitably pliant material?

We predict that if this scheme were to be incorporated into the Articles of Association that the elimination of the means whereby trustees of the Board are elected democratically by the membership through the AGM election process will have been accomplished by stealth and that via these steps, the existing Board will have secured for itself total control over who joins its Board and who does not and it will have achieved the self perpetuating oligarchy and “mates club” it has sought to become, since Charles Shepherd got himself elected to the Board in December 2003.

The AGM trustee elections will become tokenistic and largely redundant – their only purpose to re-elect retiring trustees back into office.

Is this the route the membership wants the MEA to go down?

Suzy Chapman & Ciaran Farrell
20 January 2008

 

Suzy Chapman
me.agenda@virgin.net  
http://meagenda.wordpress.com  

Ciaran Farrell
ciaran@jfarrell58.freeserve.co.uk  

Essential investigations for people with ME/CFS? by Margaret Williams

The article below was published by Margaret Williams and circulated on Co-Cure on 17 January 2008 by Stephen Ralph of MEActionUK . The article was circulated by Mr Ralph under the heading “Permission to Repost” and can also be read in the Co-Cure public archives here

The article is available here on the MEActionUK website, where a complete archive of all Ms Williams’ previous articles can be found.

Any queries relating to the content of Ms Williams’ articles should be directed to Stephen Ralph, not to ME agenda.  Mr Ralph can be emailed here 

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Permission to Repost

http://www.meactionuk.org.uk/Essential_investigations_for_people_with_ME.htm

Essential investigations for people with ME/CFS?

by Margaret Williams

16th January 2008

On 14th January 2008 Fred Springfield drew attention on Co-Cure to a Review Article associated with inflammation in medically ill patients (“Identification and treatment of symptoms associated with inflammation in medically ill patients”; Robert Dantzer et al; Psychoneuroendocrinology 2008:33:18-29). The Review was the result of a meeting on 28th and 29th May 2007 in Bordeaux, France, on inflammation, psychiatry, neurosciences and psychoneuroimmunology, attended by experts from the US, France, the UK and Israel.

As noted by Fred Springfield, whilst not relating specifically to ME/CFS, the Review may nevertheless be of interest to the ME/CFS community, whose members may be aware that there is evidence of low-grade (but still important) inflammation in ME/CFS — see, for example, “Low grade inflammation and arterial wave reflection in patients with CFS”; VA Spence et al, Clin Sci 2007, Epub ahead of print: doi:10.1042/CS20070274, which contains 54 references and demonstrates that, despite the recent reporting that markers of post-infective fatigue syndromes are not sustained into the chronic phase of the illness and play no role in persisting symptoms, hsCRP levels in (ME)CFS are indeed indicative of chronic, low-grade, sub-clinical inflammation. (Within the last ten years, researchers have developed a high sensitivity immunoassay known as hsCRP, which is a much better assay and a more sensitive marker than CRP, as it can measure levels below 10mg/L. Whilst some clinicians may still regard low levels as unimportant, nevertheless at these levels, measurement of conditions indicative of chronic, low-grade inflammation are now possible).

The Review recommends testing for a standardised set of inflammatory biomarkers, but the NICE Guideline on “CFS/ME” issued in August 2007 specifically proscribes such tests.

The following are quotations that might be relevant for people with ME/CFS:

“The most harmful and costly health problems in the Western World are originating from a few diseases (and) in addition to the specific symptoms that are characteristic of each of these conditions, most patients experience non-specific symptoms that are similar in all these conditions and include depressed mood, altered cognition, fatigue, and sleep disorders”.

“The possibility that immune-to-brain communication pathways represent the main biological mechanism for symptom burden experienced by medically ill patients has now gained credibility in the medical community”.

“This meeting brought together clinicians and basic scientists with a common interest in understanding inflammation and associated symptoms in medically ill patients (and it) focused on: (a) predominant symptoms associated with inflammation, (b) markers of inflammation at the periphery, (c) possible markers of brain inflammation associated with low-grade peripheral inflammation in humans, (d) animal models of inflammation-associated symptoms, and (e) domains of intervention for controlling inflammation-associated symptoms”.

“Among the myriad of questionnaires that are available to categorise or assess fatigue, sleep disorders, altered cognition and pain, none specifically refers to inflammation-associated neurobehavioural alterations”.

“The diagnostic tools that are favoured by psychiatrists are clearly not the best ones. As pointed out by Joel Dimsdale (San Diego, CA), the concept of somatisation that is used for characterising symptoms in the absence of any detectable disease is of little operational value, if not misleading”.

“For instance, the enduring fatigue experienced by the vast majority of breast cancer survivors could easily be labelled as somatisation disorder according to the 4th Edition of the Diagnostic and Statistical Manual of Mental Disorders”.

“Making fatigue a somatisation disorder overlooks the fact that fatigue has both mental and physical components, thereby denying a possible organic aetiology to explain such fatigue”.

“Furthermore, this emphasis on the lack of an organic basis favours missed diagnoses (e.g. fatigue and thyroid abnormalities, or fatigue and inflammation)”.

“Inflammation is not a stable condition. In a given individual it can fluctuate rapidly according to a number of environmental factors (e.g. stressors) and internal variables (e.g. diurnal variation of cortisol)”.

“Basic aspects of diagnosis of behavioural disorders remain controversial and lack solid scientific foundations”.

“In order to provide consistency, all studies examining the potential impact of inflammatory pathways should include a standard set of inflammatory biomarkers (which should include) the acute phase proteins, CRP, sialic acid and hatoglobin; the inflammatory mediators, prostaglandins E2 and C3A and the innate immune cytokine IL-6 as measured by the high sensitivity (hs)-enzyme-linked immunosorbent assay (ELISA) in plasma. These biomarkers, especially hs-CRP and IL-6, have been found to reproducibly identify the presence of an activated immune response in a number of disorders. Most of these assessments can be run in certified commercial or hospital laboratories”.

“There have been significant advances in imaging techniques during the past ten years (and) a variety of imaging techniques have enabled inflammation in the brain to be viewed in real time. However, except in conditions of severe systemic inflammation, signalling of systemic inflammation to the healthy brain does not involve structural damage”.

“It is important to highlight the distinction between signalling by molecules typically associated with inflammation and an inflammatory response per se. During systemic inflammation there is induction of IL-1b and other proinflammatory cytokines, but there is no inflammatory response in the brain. It is of interest that microinjection of IL-1b into the brain at concentrations that would typically give rise to inflammation in peripheral tissues does not lead to typical inflammation within the brain parenchyma. This indicates that the biological significance of IL-1b in the brain parenchyma is different from that in other tissues”.

“Although we have the necessary tools to image inflammation in the brain, it seems we do not have sufficiently sensitive tools to image signalling in the brain consequent to a systemic inflammatory response”.

“Proinflammatory cytokines induce the production of several downstream inflammatory mediators, such as prostaglandins and nitric oxide. Proinflammatory cytokines and other inflammatory mediators are produced by accessory immune cells, such as macrophages and monocytes in the periphery, and microglia within the central nervous system. Targeting cell trafficking into the central nervous system is unlikely to be a very useful approach since symptoms of sickness are dependent on the activation of brain cytokine signalling independently of any blood cell recruitment”.

“Peripheral infections can sensitise or exaggerate existing brain inflammatory processes (and) elevated cytokine levels in blood have the potential to reverberate and activate central nervous inflammatory systems”.

The Conclusions of the Review note the intense discussion at the meeting that resulted in a series of recommendations for improving understanding of the relationship between inflammation and subjective health complaints.

These recommendations note that because inflammation-associated sickness symptoms are a major impediment to human health, research on the mechanisms and treatment of such symptom burden in physically ill patients should be strongly encouraged; that clinical tools for assessing inflammation-associated symptoms should be standardised; that there should be a minimum set of inflammatory biomarkers; that brain neuroimaging techniques should be used for revealing the brain structures that are influenced by peripheral inflammatory processes and whose ability to process information is impaired by excessive amounts of interoceptive stimuli (caused, it seems, not – as asserted by Wessely School psychiatrists — by aberrant focusing on normal bodily sensations or by “remembered illness” but by inflammatory processes), and that the high presence of inflammation-associated symptoms in physically ill patients provides a background against which it is possible to test alleviating effects of therapies targeting immune-to-brain communication pathways.

The Review notes that despite major advances in the understanding of the immune-to-brain communication pathways that underlie the pathophysiology of symptoms in inflammatory conditions, little has been done to translate this knowledge to the clinics.

As NICE is now in the process of contacting selected people asking for their input on the advisability of it producing guidance on the use of Ampligen in “CFS/ME”, might NICE also be persuaded to seek the input of experienced vascular biologists on the advisability of it recommending specific testing for inflammation in ME/CFS?

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www.meactionuk.org.uk

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