APPG on ME: Minutes and Transcript for 8 July 2009 meeting

All Party Parliamentary Group on ME meeting 8 July 2009

The last meeting of the APPG on ME took place on 8 July 2009.  The Minutes are published below, in both PDF format and as text.  The transcript of the entire meeting is posted in PDF format only.

Minutes APPG on ME 8 July 09

Transcript APPG on ME 8 July 09

 

Text of Minutes:

All Party Parliamentary Group on M.E.

Chair: Des Turner MP
Vice-Chairs: Andrew Stunell MP
Tony Wright MP
Secretary: Countess of Mar
Treasurer: David Amess MP

 

Minutes of the meeting of the All Party Parliamentary Group on M.E.
held at 1.30-3pm, Wednesday 8 July 2009
Committee Room 13, House of Commons

 

Present:

Parliamentarians
Dr Des Turner MP
Andrew Stunell MP
Countess of Mar
Peter Luff MP
Edward Davey MP

Secretariat
Sir Peter Spencer (Action for ME)
Heather Walker (Action for ME)
Kimberley Hogarth (Action for ME)
Charles Shepherd (MEA)

Organisations and individuals
Paul Davis (RiME)
Jane Colby (Tymes Trust)
Christine Harrison (BRAME)
Doris Jones (25% Group)
Joy Birdsey (K&SAME)
Jill Cooper (Warwickshire Network for ME)
Bill Kent (reMEmber)
Janice Kent (reMEmber)
Augustine Ryan
Michelle Goldberg

Apologies:

1. Welcome

The Chairman welcomed those present and apologised to those who may have been inconvenienced by a change of room. Two further apologies were made: that unfortunately there would be no speaker today, and that the chair would have to leave the meeting at 2 p.m. but that the Countess of Mar had kindly agreed to complete the meeting.

2. Annual General Meeting

Current officers were re-elected with the exception of Dr Ian Gibson, who had resigned as an MP. The Countess of Mar was elected to replace him. The elected Officers for 2009-2010 are therefore:

Chair: Dr Des Turner MP
Vice-Chairs: Andrew Stunell and Anthony Wright
Treasurer: David Amess
Secretary: Countess of Mar

The Chair pointed out that he is not standing at the next general election, so a new Chair will have to be found at that point.

3. Minutes of the last meeting

The Chair reminded the Group that the minutes are not intended as a verbatim record; they are business minutes. However he accepted that Paul Davis had said at the last meeting: “There is a road map that goes back to the CMO report, York review 1, and a certain school of psychiatry.” The reference to the CMO report had been omitted from page six of the transcript.

4. Matters arising

Jane Colby asked that it be noted that the BBC Politics Show, filmed in part during the last meeting, was transmitted in ME awareness week, and that everybody was very grateful to the APPG for allowing it to happen.

5. APPG Inquiry into NHS Services

The Chair reported that evidence sessions were due to start at 2pm the next day in Committee Room 19. The first session would hear from patients and patient organisations. He hoped that the next week’s session would include a Minister, the Chief Medical Officer and service providers. Many patients had submitted evidence. Questionnaires had been sent to all Primary Care Trusts. The aim was to produce a report which would act as a campaigning tool to improve services for people with ME.

During the discussion which followed, Dr Turner had to leave and the Countess of Mar took the chair. Some concerns were raised eg. that:

i. Existing services were not focused on neurological ME and over-emphasised the psychosocial model
ii. Some people would not respond to the survey for that reason
iii. Some panel members had made favourable comments about existing services in the past
iv. Evidence sessions clashed with key local meetings elsewhere, affecting attendance
v. People submitting evidence had not received confirmation of receipt due to the inquiry’s lack of administrative support
vi. Publicity for the inquiry had been limited and would not reach the majority who were not in touch with certain charities, support groups or services
vii. Some patients do not collate evidence
viii. How issues not covered by surveys, such as the replacement of consultants by new services in some areas, could be addressed.

Some issues could be raised via questions through the panel eg. support for severe cases.

It was noted that the decision had been taken by parliamentarians at the last meeting, to drive forward the inquiry quickly, because of the imminence of a general election.

The hope was for a report by the inquiry which would have sufficient credibility, evidence and parliamentary authority for consideration by the Health Select Committee.

6. Statement from WMMEG (West Midlands ME Groups) Consortium on ME/CFS – Education and Training in the NHS

i. Heather Walker apologised formally for tabling the wrong statement on their behalf at the last meeting.
ii. Jill Cooper asked that sufficient time to be allocated to discuss the key issues of appropriate NHS training at a future APPG meeting.
iii. Sir Peter Spencer responded to the WMMEG statement saying that he did not believe that NHS staff were being ‘trained’ to treat this illness as a psychological illness and that Action for M.E.’s involvement in the last NHS collaborative conference had resulted in delegates hearing Professor Stephen Holgate emphasise the importance of getting new research talent into the field, plus discussion on the need for properly derived patient reported outcome measures.
iv. Noting to the statement’s reference to Pathways to Work, the Countess of Mar reported that the Welfare Reform Bill was going through the House of Lords. She had been fighting hard to have ME and other fluctuating conditions recognised in their own right by the Grand Committee and not “lumped in” with mental illness.

The meeting acknowledged its appreciation of all the work that the Countess had done.

7. Future Work of the APPG

Ideas included:

i. Inviting Baroness Young, Care Quality Commission, to address the Group
ii. Maintaining focus on the DWP and Welfare to Work
iii. Follow-up on the presentation made by Jane Colby and Mary-Jane Willows about child protection problems, by asking the Inspector of Social Services to come to the APPG to listen to parents, consider how social services might be alerted to the possibility of M.E. in children and examine how parents could be informed of their rights eg. though a simple leaflet signposting information and organisations that could help them.

8. All Party Parliamentary Group Legacy Paper

As a General Election was due and the Chair had noted his intention to stand down, it was suggested that it might be useful to draw up a short summary of the APPG’s recent activities, outstanding concerns and objectives for consideration by the new Chair and any other new officials.

People with M.E. could be invited to put forward three or four bullet point suggestions for the key issues and objectives and to submit them to Heather Walker, Action for ME and Charles Shepherd. On behalf of the Secretariat, Action for M.E. would produce a draft consensus document from the results.

Action: Heather Walker to supply a copy of the Legacy Paper produced by the Cross Party Group on ME in the Scottish Parliament before their last General Election.

Click for Legacy Paper

9. Website

A website had been set up for the APPG at www.appgme.org.uk. Although the impetus for the site had come from the inquiry, the site would continue after the inquiry and would be the central focal point of information about meetings and activity.

10. Any Other Business

Michelle Goldberg raised the case of Kay Gilderdale 54 and the assisted suicide of her daughter, Lynn, after 17 years of M.E.

Michelle described the lack of support she herself had faced and highlighted problems experienced by another woman proven innocent after receiving an ASBO.

Christine Harrison reported on her campaign about pets in holiday accommodation. Currently, customers with allergies can not be guaranteed a holiday property in which a registered guide and/or support dog has not stayed. The Countess of Mar had kindly taken this up in the House of Lords, asking for a new clause to be added to the Disability Discrimination Act to say that people who rent out holiday accommodation are permitted/allowed to have a policy of no pets and no smoking to allow them to offer accommodation to guests who may have health conditions  and/or allergies that might be exacerbated by the presence of pets and smoke.

11. Date of Next Meeting

The chair advised the group that the next meeting would be in the Autumn

Invest in ME: Statement regarding Forward-ME

The Minutes of the last meeting of the Forward-ME group (a caucus group to the APPG on ME, convened and chaired by the Countess of Mar) held on Wednesday 8 July, at the House of Lords, can be read here on ME agenda or here on the website of Forward-ME.

Invest in ME, who are members of this group, have issued a statement in connection with Forward-ME and the last meeting of the group:

Invest in ME

[Forward-ME] Meeting 8th July 2009

IiME were not able to attend the meeting of this group on 8th July 2009 in London. As for every other meeting we submitted our comments to the Countess of Mar and all other members of this group in advance.

1 Attendance at Meetings and Visibility of Comments

We would like to return to our previous email (submitted in an email on 12th December 2008) where we stated the following -

We understand that, as we were unable to attend the last meeting, any decisions made at the meeting would not include our vote.

However, we see no reference in the minutes of either of the meetings to show that our views, as submitted in documentary form prior to each of the meetings, have been discussed or included in the discussions.

We would like to see that our comments have been entered into the discussions. Will the minutes reflect this?

We never received any response from our email of 23rd March.

2 GOSH medical meeting on ME/CFS in September to be discussed and the subject of Lightning Process

In the next meeting the subject of the GOSH at a day long medical meeting on ME/CFS in September is to be discussed and the subject of Lightning Process.

Mary-Jane from AYME has written “I share your concerns about this (LP) being included in the meeting”

We find this strange and hypocritical.

AYME have advertised LP for its members and freely allow discussion without seemingly making any critical comment on the lack of a research base, the numerous cases where people have been made worse and the fact that the practitioners of LP are generally not registered healthcare practitioners and take no responsibility for the results.

To state that there are concerns seems to us to be hypocrisy.

One should also remember that AYME and AfME are not in a position to criticise GOSH for including behavioural therapies/businesses as most of their recent joint conference in Milton Keynes included known advocates of the behavioural causality for ME and also included an insurance company representative.

3 Questions for Esther Crawley CNRCC Children’s Services

We have the following questions for Esther Crawley.

In your CV it states that you published research showing “children with CFS/ME don’t go to school because they are unwell not anxious”. However, isn’t it true that you believe there is a condition termed Pervasive Refusal Syndrome (PRS)?

If the answer to i) is yes then what proof do you have of this, what research is there to prove this really exists?

If the answer to i) is yes then how many children who were diagnosed with ME have you believed to have PRS?

What medical tests do you perform on patients who are suspected of having ME/have ME?

Do you test for acute and/or reactivated infections?

From the minutes of the meeting it appears none of our points were discussed. IiME were informed by CoM [Countess of Mar] that the questions to Esther Crawley were not asked as they were not appropriate to the discussion. The minutes of that meeting are available here

Ends

——————-

Please note that ME agenda is unable to enter into correspondence around the Lightning Process.  Please direct any enquiries regarding the content of the Minutes of Forward-ME meetings to the Chair of Forward-ME.  Please direct any enquiries regarding the content of Invest in ME’s statement to Invest in ME.

Forward-ME: Minutes of meeting 8 July 2009

Would Dr Esther Crawley like to provide evidence to support this statement?

“Dr Crawley explained that the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement.”

In February, this year, Dr Crawley, who had been a member of the NICE Guideline Development Group, was awarded £730,000 for research into “CFS/ME” and “Fatigue” in children:

http://www.bristol.ac.uk/ccah/news/2008/12.htmldresthercrawley

 

The Minutes of the last meeting of the Forward-ME group, held on Wednesday 8 July at the House of Lords, have now been posted on the group’s website:

This is a caucus group to the APPG on ME convened by the Countess of Mar, last October. Membership of the group is by invitation only; members of the public are not permitted to attend either as participants or observers.

The 25% ME Group had been a member of Forward-ME but has since withdrawn all involvement with the group. 

—————————-

http://www.forward-me.org.uk/8th%20July%202009.htm

FORWARD-ME

Minutes of the meeting held on Wednesday 8 July 2009 at the House of Lords

1. Present: Christine Harrison – BRAME

Bill and Janice Kent – ReMEmber

Jane Colby – TYMES Trust

Peter Spencer – AfME

Charles Shepherd – MEA

Mary-Jane Willows – AYME

Margaret Mar – Chairman

 

2. Apologies: Tanya Harrison – BRAME

Sue Waddle – MERUK

Kathleen McCall – Invest in ME

 

3. Minutes of the Meeting held on 21 April 2009:

The minutes of the meeting were agreed and signed by the Chairman.

4. Dr Esther Crawley, FRCPCH; PhD, Senior Lecturer at the University of  Bristol and a Consultant Paediatrician, Chair of the CFS/ME Clinical  Research Network Collaborative (CCRNC)

and

Dr Hazel O’Dowd, MSc, D Clin Psych, Consultant Clinical Psychologist, Clinical Champion for CFS/ME services for Avon, Gloucester, Wiltshire and Somerset:

The Chairman introduced Dr Crawley and Dr O’Dowd and thanked them for coming to address the Group.

Dr Crawley gave a PowerPoint presentation a copy of which she kindly agreed to send to us after the meeting (see Presentations )

http://www.forward-me.org.uk/Presentations.htm 

Click the link to open/save the file depending on your browser

CFS/ME Clinical and Research Network and Collaboration by Esther Crawley – PowerPoint Show file

http://www.forward-me.org.uk/Presentations/forwardME_no_photos.pps  (Ed: MS PowerPoint or compatible reader required)

She explained that there were historical issues that had resulted in mistakes being made over patient participation. She had fought for patient/carer involvement and, by the time of the next CCRNC executive there will be 8 patient/carer representatives (4 from charities) on the Executive committee.

The National Outcomes Dataset (NOD) is an essential tool for providing evidence for further research into causation and treatments.

There are many strengths upon which the CCRNC intends to build. Openness and their recognition of the importance of working together has already attracted MRC, NIHR and Welcome support. The list of current research studies currently being carried out by members of the CCRNC was extensive and covered many medical specialisms.

Provision of services was a serious weakness, especially where children were concerned. Most children did not even get a diagnosis; there was no domiciliary provision for them as, indeed, there was not for most adults who are seriously affected. There was, historically, a lack of patient involvement.

Opportunities for progress were opening up with the ability to do large-scale research on cohorts of 3,000 patients. There was no other comparable large scale cohort in the world.

An open approach which looked at both good and bad results was essential if improvements in care, data collection and sharing, and the ability to apply political pressure were to be achieved.

Dr Crawley explained that the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement.

The meeting was opened to questions. Janice Kent asked whether the Genome Wide Association Studies were linked to the genetic research conducted by DR Jonathan Kerr. Dr Crawley explained that his work involved gene expression – how the genes function. This generated hypotheses for further investigations. The results could be altered by effects secondary to the illness – by alcohol, drugs or exercise, for example. Genome-wide association studies involved scanning the DNA of a large cohort of patients to find common genetic variations associated with illnesses which would enable researchers to detect, treat and prevent diseases.

Charles Shepherd asked whether, in the light of the widespread opposition to the NICE Guidelines, charities that were opposed to them would be invited to become members or associates of the CCRNC executive. Dr Crawley acknowledged that, whilst the NICE Guidelines were flawed, they were a start. There was a need for all to work together to produce evidence to effect a change in the guidelines. In order to join the collaborative, charities would be expected to sign up to the evidence based approach. It would be a matter for discussion.

Janice Kent asked about charities and groups that had been excluded from formal representations to the specialist clinics when they were being set up. She explained that they had a wealth of information and experience. Dr Crawley said that the CCRNC want to work with everyone concerned and ask Janice to write to her with the detail.

Christine Harrison asked about coverage by the CCRNC. She explained that the east of England had no specialist services at all. Dr Crawley agreed that provision for most areas was thin. The original budget had been for about £100,000 for each clinical team. To be assessed as cost effective, this would treat 100 patients. Some regions were dealing with 300 patients on this budget. There was a very real need for effective local services.

Christine asked about the grading of patient evidence as NICE had given the very large amount of evidence it received the lowest grading. Dr Crawley acknowledged that the method for grading was imperfect. Patient experience was valuable and should inform high quality research, opening the door to further research.

Jane Colby asked about the rationale of treatments offered for different aetiologies of CFS/ME. Dr Crawley explained that with an illness like CFS/ME which is a heterogeneous disorder there were differences between what was observed clinically and what was shown biologically. She cited schizophrenia and bipolar disorder, which were thought to be separate illnesses but are the same on genome wide association studies. There was a need for caution as not enough was known. In her clinics, patients were offered a variety of options which were individualised. If they made a wrong choice another option would be sought. There is currently no evidence of what will work for different subgroups. Jane asked about return to school. Dr Crawley said that she listened to her patients and helped them to achieve what they thought they could do, whether it was to improve their athletic performance, socialising or education, for example.

Peter Spencer commented on several of the points raised including analysis of data, measurements of effectiveness, benchmarking and people wanting to work with and learn from each other. There was a need to concentrate research resources. Greater patient involvement was key. There was no obligation on PCT’s to take the severely affected into account. The severely affected were particularly neglected; they had no voice and it was not surprising that they were particularly frustrated.

Charles Shepherd commented on the fact that those with the greatest need were given the lowest priority. Dr Crawley suggested a solution would be for them to use the NICE Guidelines which state that the severely affected have the right to have an immediate domiciliary visit and access to all services. If there were no specialists in their area they should ask for an out of area referral. These were costly and, if used enough, local services would be provided on cost grounds. It was not good practice to expect severely affected children and adults to travel long distances for consultations or for physicians to travel to make domiciliary visits. The situation was gradually improving, but effective outcomes were still a drop in the ocean compared with the unfulfilled need.

Dr O’Dowd spoke about training, for which she is responsible within the CCRNC. She accepted that it was not perfect. In 2003 she had to establish training for the first wave of teams with national training for the new clinicians. The DoH mandate was to improve diagnosis by GP’s. This was improving very slowly. Initially, when they set up training courses, only a few interested GP’s attended. It was difficult to attract those who were sceptical about CFS/ME. They then attached training to the end of other events that were more attractive to GPs. There were also local GP training schemes happening in a piecemeal way. They wanted to get CFS/ME on the core curriculum for medical, physiotherapy and occupational therapy training. This was difficult, but there were some successes. She acknowledged that there were regional variations. In some places there was a high staff turnover for specialist services. They were developing the workshops. Additionally, over the next 2 years they hoped to develop an on-line training package that would be easily accessible. Working with the CCRNC had been beneficial as the trainers could have access to a large body of training material from the regions which cut down their workload.

Speaking personally, she said that there was much less scepticism about CFS/ME amongst the people she worked with. She had seen a marked change in her day to day dealings with doctors and other health care professionals. She felt that it was essential that the GP, district nurse and other members of the primary care team should always be involved in home visits. The most successful encounters were those that occurred on a one-to-one basis.

Margaret Mar asked how Dr O’Dowd would address the charge of a lack of balance between the psychological and the biomedical models of the illness at the April meeting of the CCRNC. She said that, after her experience of working with patients with other chronic conditions such as cancer and arthritis, she had been surprised to find that this was an issue with CFS/ME. She had not had any personal problems with it – in fact she found that sufferers have broader minds that many with other illnesses, possibly because they had been so neglected and forced to fend for themselves. The April conference had been full of variety, with lots of biology, but she accepted that they did not get it right. There was a problem in that many invited speakers, whose contributions were valuable, would not attend or would not agree to their papers being made public because they were wary of criticism.

Charles Shepherd asked whether the CCRNC had a view about causation, particularly the roll of deconditioning and abnormal illness behaviour. Dr O’Dowd said there was no overall view as there was no defined causation and the processes were not yet understood. This should not stop people being helpful. Patients understood well what affected them and any fitness programmes were developed jointly with the patient. Very few could be described as deconditioned.

Mary-Jane Willows commented that there was ‘no one voice’. If everyone did the same there would be no learning. Models of service were one of the factors in terms of outcomes.

Janice Kent asked about adverse effects from participation in the PACE trial. She described what had happened to a particular patient from her group, she was advised to obtain the patient’s permission and to feed back to the PACE triallists. It was essential that they were aware of bad results as well as good ones. Dr Crawley pointed out that all treatments have some side effects and that it was important to find those that worked for individual patients.

Christine Harrison asked whether CCRNC had a website. She commented on the lack of any services in East Anglia and asked whether they used patients in their training sessions. She also asked whether CFS/ME should be included in neurology training. There was no dedicated CCRNC website. As CFS/ME was bigger than just neurology, it was not thought appropriate to confine it to ‘one box’. The lack of GP services meant no home visits. As a result, there was an unknown number of patients who had fallen off the radar of NHS care. Unfortunately, there were not enough resources to cover every contingency and it was impossible to train GPs who do not want to listen.

Peter Spencer echoed the need for training and commented on the variations in awareness of CFS/ME. *He understood that Dr Miller of Liverpool University had developed a training module on CFS/ME for the Royal College of physicians. The workshops at the April conference had involved professional workshops and good interaction. Assumptions about the agenda for the conference were, unfortunately, based on assumptions about where speakers came from rather than facts based on what they actually said. AfME was associated with PACE and had been pleased by the very low drop-out rates. He agreed that adverse effects should be reported. There was a need to reconcile evidence of NHS providers with patient surveys on outcomes and to question the differences. In so far as GET was concerned, there was a need to look at the detailed evidence with clinicians. For example, he asked whether it was proper GET. Were randomised control trials appropriate for long-term, chronic conditions such as CFS/ME? He agreed that evidence based principles were essential.

Charles Shepherd asked whether there were exclusion criteria as he had a case where a patient had been excluded on grounds of obesity. Dr Crawley said there was no central policy. She screened her patients because there were other causes of fatigue and she had found one child with undiagnosed leukaemia. She could not judge decisions made by other clinicians.

5. **Lightning Process:

Charles Shepherd had been made aware of a meeting which was to take place at University College London in conjunction with Great Ormond Street Hospital which appeared to promote the Lightning Process for patients with CFS/ME. As Dr Crawley knew something about the subject, she was asked to remain and to contribute to the discussion. Of particular concern was the promotion of the programme to vulnerable clinicians who had just started to practice. After some discussion about the pros and cons of the programme, it was agreed that Mary-Jane Willows would talk to the organisers on behalf of Forward-ME highlighting our concerns.

6. APPG Inquiry:

As this had been discussed at the APPG meeting that took place immediately before the Forward-ME meeting, it was agreed that there was not much more to be said, though there were concerns about delays and the incomplete coverage of prospective witnesses with questionnaires.

7. MRC Project:

***Charles Shepherd reported that the latest information was in the MEA magazine and on their website.

8. Any Other Business:

Margaret Mar reported that she had had an interesting meeting with Dr Wendy Ewart, Director of Strategy for the MRC. She was interested to work with us and to meet the CCRNC team.

Following a letter from InvestinME [sic] in which the difficulties of working with charities and groups who were not of the same mind on particular matters, Margaret Mar had written to them asking whether they wished to continue with their membership of Forward-ME. This would be discussed further at the next meeting.

There being no further business, Margaret Mar thanked Dr Crawley and Dr O’Dowd for their very full presentations and for their candid responses to our questions. She hoped that they would both agree to continue to work with Forward-ME.

9 Date of Next Meeting:

To be advised.

——————-

*Dr Alistair Miller was a presenter at the Royal Society of Medicine “Chronic Fatigue Syndrome” Conference on 28 April 2008:

Download Abstracts and Biographies [PDF 86k]
http://www.rsm.ac.uk/chronicfatigue08/abs.pdf

What drugs can I use? [PDF 243k]
Dr Alastair Miller, Royal Liverpool University Hospital
http://www.rsm.ac.uk/chronicfatigue08/moss_miller.pdf

What drugs can I use? Dr Alastair Miller
http://rsm.mediaondemand.net/player.aspx?EventID=1337

**Please note that ME agenda is unable to enter into correspondence around the Lightning Process.  Please direct any enquiries regarding the content of these Minutes to the Chair of Forward-ME.

***Refers to the MRC CFS/ME multi-disciplinary panel chaired by Prof Stephen Holgate.  Although the group has held several meetings, the group’s Terms of Reference have yet to be agreed and published (FOI Act).

APPG on ME meeting: 8 July 2009 and Inquiry into NHS services 1st Oral Evidence session: 9 July 2009

Update: 12 July:

The Inquiry questionnaire for Service Providers is now available from the APPG on ME website here:

http://www.appgme.org.uk/NewQuestionnaire/Questionnaire.html

QUESTIONNAIRE on Service Provision

Below is the questionnaire on service provision sent to PCTs in England and Wales

http://appgme.org.uk/Downloads/PCT_ME_Survey_Final.pdf

or open PDF here on ME agenda:  PCT ME Survey Final

—————————-

1] APPG on ME meeting: 8 July 2009

2] APPG on ME Inquiry into NHS services for people with ME: 1st Oral Evidence session: 9 July 2009

 

1] A meeting of the All Party Parliamentary Group on ME (APPG on ME) took place on Wednesday, 8 July 2009 in House of Commons Committee Room 13.

The meeting, which also served as the Group’s AGM, was attended by MPs Dr Des Turner, Andrew Stunell, Peter Luff and Edward Davey, representatives of national patient organisations, including Action for M.E., The ME Association, The Young ME Sufferers Trust, BRAME, RiME, ReMEmber (The Chronic Fatigue Society) and several members of the ME community.

AGM: Re-elected Office Holders:

Dr Des Turner was re-elected Chair.

Vice Chairs Andrew Stunell and Tony Wright and Treasurer, David Amess, remain Office Holders.

Dr Ian Gibson who had served as Secretary to the APPG on ME committee stood down following his resignation from Parliament in June.

The Countess of Mar* was elected Secretary to the APPG on ME.

Dr Turner warned that a new Chair would be needed as he does not intend to stand again in the next General Election.

Action for M.E. and the ME Association will continue to provide administrative support to the APPG by providing the Secretariat.

Summaries of the meeting, a transcript and minutes will be posted here as they become available. The next meeting of the APPG on ME will take place in the Autumn.

The APPG on ME maintains a website at: http://www.appgme.org.uk

*In October, last year, the Countess of Mar convened and chairs a caucus group – Forward ME. The members of the Forward ME caucus group are: Action for M.E., The ME Association, AYME, The Young ME Sufferers Trust, BRAME, Invest in ME, ME Research UK and ReMEmber (The Chronic Fatigue Society).  The 25% ME Group was a member of Forward ME but has since withdrawn from the group.

A website for Forward ME is maintained at: http://www.forward-me.org.uk  where agendas and minutes of meetings can be accessed.

 —————————-

2] APPG on ME Inquiry into NHS services for people with ME: 1st Oral Evidence session: Thursday, 9 July 2009

It is unconfirmed which national patient organisations have submitted Written Evidence and whether and when these submissions will be released.

Following the first Oral Evidence session, the ME Association published its 3000 word submission.

The full submission can be read on the ME Association’s website.  As this is a long document I am publishing only the Executive Summary, below:

For the full Written Submission go to:  http://www.meassociation.org.uk/content/view/911/161

ME Association submission to the APPG Inquiry into NHS Services for people with ME

The All Party Parliamentary Group on ME Inquiry into NHS services for people with ME/CFS is now calling witnesses to give evidence before it. Dr Charles Shepherd, our medical adviser, answered questions this afternoon (Thursday July 9). Our written submission appears below.

EXECUTIVE SUMMARY

1 ME/CFS covers a wide spectrum of clinical presentations and severity. This has to be appreciated when planning NHS service development and the training of those involved – doctors, nurses, occupational therapists, physiotherapists – in the clinical assessment and care of patients.

2 Everyone with ME should be able to receive an early and accurate diagnosis, normally through the primary care system, along with access to a local hospital based specialist service for further advice on either diagnosis or management, where necessary.

3 The severely affected group require home based management and designated in-patient beds for assessment and management.

4 The MEA submission describes serious deficiencies and omissions in all of the above key aspects of assessment and care.

5 The 2002 Chief Medical Officer’s report into ME/CFS made a number of specific and helpful recommendations regarding service development. The subsequent injection of ring-fenced funding from the Department of Health resulted in a number of new services opening. However, some parts of England still have no local specialist service to whom patients can be easily referred and some of the existing services are experiencing serious problems with funding.

6 The MEA submission highlights positive aspects of the CMO report that have still not been acted on by those responsible for funding and providing NHS services.

7 The 2007 NICE guideline on ME/CFS forms the new basis for clinical assessment, diagnosis and management of ME/CFS patients. Almost all of the charities representing people with ME/CFS believe that the NICE guideline has made the management situation worse because of their ‘one size fits all’ approach, which involves only recommending cognitive behaviour therapy and graded exercise therapy. This approach fails to take into account the fact that large numbers of people with ME/CFS report that these two treatments are either ineffective or cause a worsening of their condition – but this is all that is being offered in the way of management to significant numbers of people..

8 The MEA submission explains why the recommendations on management in the NICE guideline are a major stumbling block when it comes to providing services for people who are not going to be helped by CBT or GET.

Read on here:  http://www.meassociation.org.uk/content/view/911/161

—————————-

Action for M.E. has published a report on the 1st Oral Evidence session

Report of Day 1 of the APPG inquiry into NHS service provision for people with M.E.

Based on notes by Sir Peter Spencer, CEO, Action for M.E.

At 2pm 9 July, the All Party Parliamentary Group inquiry into NHS service provision for people with M.E. met in Committee Room 8 in the Houses of Parliament for its first session of taking oral evidence from witnesses.

Des Turner MP took the chair and was joined by the Countess of Mar, Andrew Stunell MP and Tony Wright MP. The other member of the inquiry team, Peter Luff MP, was unable to attend on this occasion. It is understood that a large amount of written evidence has already been received from patients, patient groups and from various parts of the NHS involved in service provision.

The oral evidence was recorded and the intention is that it will be typed up and made publicly available probably via the APPG website (www.appgme.org.uk ).

The proceedings began quite rightly by taking oral evidence from patients. Three people had been selected from those who had sent in written evidence. They were Cathy Fry from Sussex, Jo [Ed: Joy] Birdsey from Kent and Sally Phillippe from Middlesbrough. The inquiry team invited each person to expand upon their personal experience of the illness by asking questions about the availability of services for their M.E. and the nature of those services.

All three had had significant problems with accessing appropriate care.

In Sally’s case she has still had no help apart from a diagnosis 12 years ago because there are virtually no M.E. services in Teeside – an area with a population of 670,000. Her local Primary Care Trust (PCT) had refused to fund a referral to services outside of their area. Sally explained that she felt very angry not only about her own experience but also on behalf of the large numbers of other people who had also not been given the help they need from the NHS.

Jo had found her local PCT in Kent to be extremely difficult, putting “M.E. at the bottom of the list” and being unwilling to enter into discussion about priorities for treating M.E. patients. She illustrated her own case with a graphic account of a particularly badly delivered set of Cognitive Behavioural Therapy (CBT) sessions.

Cathy encountered great difficulties with getting the help she needed from the NHS in Sussex over many years. She had finally decided to try the Lightning Process (LP) when her GP told her that although he was very sceptical, he had been astonished by the result experienced by one of his patients. Despite her own misgivings, Cathy tried LP and to her own astonishment it has produced such an improvement that she now describes herself as recovered. It was recognised by the inquiry team that LP does not work for all patients and that many are disappointed. It is also not available from the NHS and has to be paid for by the patient – £560 in Cathy’s case.

A common theme that emerged was the difficulty of finding GPs who are informed about M.E. and are supportive. Tony Wight asked the witnesses if it would be helpful for GP practices to have M.E. trained nurses to help GPs with M.E. patients. The response was a cautious yes but only if they are properly trained and are able to undertake domiciliary visits. It was important for patients to have access to the doctor as well as to the nurse.

The second part of the session took evidence from six patient representative groups namely:

• Peter Spencer – Action for M.E.
• Charles Shepherd – ME Association
• Mary-Jane Willows – AYME
• Doris Jones – 25% Group
• Christine Harrison – BRAME
• Jill Piggott – Worcester M.E. Support Group [Ed: Jill Pigott - Worcestershire M.E. Support Group]

Only 45 minutes were left for this final part of the session which had been interrupted several times when MPs and the Countess had to leave for votes in both chambers of the House. Each witness made an opening statement highlighting aspects that they wished to be considered by the inquiry team.

In its written evidence, Action for M.E. has already submitted the report M.E. 2008: What progress? Peter Spencer said that he would wish to cover during the evidence session the key findings and the main recommendations, including those relating to lack of service provision for children and the severely affected.

Our survey showed some improvement in NHS services since 2001 but the rate of improvement has been far too slow.

Peter also challenged the undue weight given by the NHS to Randomised Controlled Trials (RCTs) quoting from the 2005 National Service Framework for Long Term Conditions that “RCTs and other quantitative methods are not  necessarily best suited to research questions involving long term outcome, varied populations with complex needs and assessment of impact on quality of life rather than a cure.”

He also submitted a copy of the views of the Chair of NICE Sir Michael Rawlins, in a speech given in October 2008 which expresses serious reservations about RCTs being put on an undeserved pedestal. He said, “Their appearance at the top of hierarchies of evidence is inappropriate; and hierarchies themselves are illusory tools for assessing evidence.” Sir Michael had also questioned the “generalisabilty” of RCTs whereby limited data from trials is extrapolated to a wide population. Peter stated that this was precisely what had happened with the RCTs which had involved ambulant M.E. patients and that these trials had been given disproportionate weight in drawing up treatments available from the NHS. Other points raised by Peter included:

. how the Department of Health and Ministers remain accountable for the overall delivery of M.E. services when decisions on service delivery are delegated to so many individual Care Commissioners in Primary Care Trusts

. health economics are relevant. The annual cost to the UK of the burden of M.E. was estimated in a study done in conjunction with Sheffield Hallam University in 2002/03 as being £3.4 billion at 2002 economic conditions.

Updating that number for inflation gives estimates of £4.14-£6.4 billion per annum at 2008 prices. This is an area which merits further work to bring it up to date.

Peter also expressed strong support for some valuable points raised by his fellow witnesses, notably:

. the need to investigate the problems that patients still encounter with GPs who are sceptical or ill informed about M.E. – or both.

He illustrated this by reading out anonymous excerpts from patient narratives acquired in Action for M.E.’s 2008 survey:

www.afme.org.uk/res/img/resources/Survey%20Summary%20Report%202008.pdf

Charles Shepherd has recommended that the Royal College of GPs gives evidence at the next session. Action for M.E. agrees

. the value of a National Services Framework specifically for M.E. because this would be enforceable and set standards of care which all PCTs throughout England would have to provide

. the need to engage with the Department of Schools and Education to raise awareness and understanding of the particular problems faced by children with M.E. and their families.

It would be fair to say that all of the patient representative organisations were frustrated by the limited time available for their oral evidence. Nonetheless, a lot of powerful points were made and Action for M.E. and the other organisations have all made substantial written contributions.

On Thursday 16 July the inquiry team meets again this time to hear evidence from the Department of Health as provider of NHS services.

It is hoped that witnesses will include a Government Minister as well as senior figures from the NHS. The session is scheduled from 2-4 pm in Committee Room 18 in the House of Commons.

The general public are able to attend. If you would like to see this piece of history being made, you need to plan to arrive by 1.30 pm to allow time for the security checks and volume of queuing which is unpredictable.

Wheel chair access is available and the House of Commons staff are extremely helpful. Do check the APPG website close to the date to confirm that the location has not been changed. The link is: www.appgme.org.uk  

Ends

—————————-

ME agenda: Notes:

[1] The APPG on ME Inquiry into NHS services for people with ME is an unofficial inquiry being undertaken by an ad hoc committee of parliamentarians. The inquiry has not been commissioned and is not being undertaken by a Parliamentary committee, Select Committee or Standing Committee. The Inquiry and any report that results out of it does not have the authority of either of the Houses of Parliament or any government department.

“In parliamentary terms all-party groups have no official status, and are viewed as informal. Their reports therefore have only the authority of those who produce them.” Philippa Wainwright, Office of the Parliamentary Commissioner for Standards

[2] It is reported that the CMO, Sir Liam Donaldson, has been invited to attend the second evidence session on 16 July.  It remains  unconfirmed whether Sir Liam has accepted this invitation.

[3] Dr Des Turner, MP, Chair of the APPG on ME who also Chairs the APPG on ME Inquiry into NHS services for people with ME is a Patron to the Sussex & Kent ME/CFS Society.  It is not known whether Dr Turner will remain Patron to the Sussex & Kent ME/CFS Society following his intention to stand down at the next general election.

[4] Connie Nelson has reported via Co-Cure (11 July 2008) that testimony on LP was included in the APPG on ME NHS services Inquiry and queries whether this might be related to the following: 

New adviser

Dr Michael Broughton, who is in charge of the Mid Sussex-based M.E. services, has joined the Sussex ME/CFS Society as its medical adviser. (Brighton Argus, p 15, 27/06/09)

Phil Parker at Swallows
http://digbig.com/5baaxp

Sunday, March 1, 2009 at 8:26PM

Phil Parker visited Swallows Retreat to meet with Dr. Michael Broughton, Consultant Specialist ME/CFS Sussex, and Colin Barton of the Sussex and Kent ME Society.

They joined Linda for a Summer barbecue in Swallows garden, looking at its best in July, and thirty graduates of the Lightning Process for M.E. at Swallows, who enjoyed the opportunity to thank Phil Parker, Developer of the Lightning Process for the difference he has made in their lives.

Some took the opportunity to swim in the pool and the party went on after Dr. Broughton and Phil Parker had to return to their respective clinics.

Dr. Mike Broughton and Phil Parker are now in consultation about further clinical trials beyond the year long one currently being undertaken with Linda’s Lightning Process participants at Swallows.

—————————

Ed: Please note that ME agenda is unable to enter into any correspondence around the Lightning Process with LP practitioners, members of the public, media or others.

Next meeting of the APPG on ME: Wednesday 8 July 2009

Three upcoming events this week:

APPG on ME meeting

The next meeting of the All Party Parliamentary Group on M.E., chaired by Dr Des Turner MP, will take place on Wednesday 8 July 2009, Committee Room 19*, House of Commons, 1.30-3pm.

*Please note this change of venue which was previously given as Committee Room 20

The meeting will also serve as the group’s AGM.  Committee officers holders for the next parliamentary year will be elected (Dr Gibson is no longer Secretary to the APPG on ME having recently stood down as MP for Norwich North) and the future work of the APPG on ME will be discussed. No invited speaker for this meeting has been announced.  Members of the public are permitted to attend these meetings (please see my note of clarification around the status of membership of the APPG on ME at the end of this post).

Agenda for Wednesday’s meeting

 

APPG on ME Inquiry into NHS Services for people with ME

There is considerable confusion about the dates and times for these sessions since the APPG on ME website states:

“Evidence sessions are likely to commence 14 July 2009 and a later notice will give details of these.”

But no notice has been issued setting out the dates and times for these oral hearings/evidence sessions by either the APPG on ME committee, the inquiry panel Chair, Dr Turner, or the secretariat to the APPG on ME.

According to unofficial reports, oral hearings for this inquiry are being held, this week, on Thursday, 9 July (the day after the APPG on ME meeting) and last week, invitations were apparently received by some members of the ME community to attend in order to present oral evidence.  No complete list of attendees has been issued.

It is assumed that (as was the case with the oral hearings for the “Gibson Inquiry”) these hearings are intended to be held in public.  Why Dr Turner has failed to issue a notice and why the secretariat to the APPG on ME has failed to chase Dr Turner for one, isn’t clear.

Some readers will recall that in 2006, two of the oral hearings for the “Gibson Inquiry”, which had been intended to be held in public, took place virtually in camera because Dr Gibson’s administrative support staff failed to circulate a notice advertising the dates and times of these meetings and the names of those invited to give evidence.  So very few of those who would have liked to have attended these two hearings were in a position to do so. 

It is disturbing that once again, no agenda for the first of these oral hearings has been circulated by Dr Turner.  There are also concerns that some of those who have made written submissions have received no acknowledgement of their submission, whereas others have. 

If you were hoping to attend the oral hearings please contact Dr Turner, directly, at the email address or through his parliamentary office as I have no information, myself, about the hearing said to be taking place on Thursday this week.  If any information filters out I will post an update.   

Dr Des Turner:  turnerd@parliament.uk   Parliamentary Office: 020 7219 4024

This is, in any case, a poor choice of week for the ME community for the holding of oral hearings/evidence sessions – with the APPG on ME meeting on Wednesday and the Royal Society of Medicine’s “Medicine and Me” series event taking place on Saturday, 11 July.  Attendance of the RSM event is by reservation of seat.  

For information on the RSM “Medicine and me” series event: ME and CFS – Hearing the patient’s voice, Saturday, 11 July see:

http://www.rsm.ac.uk/academ/x2g106.php

———————-

Minutes of previous APPG on ME Meetings

The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:  http://www.appgme.org.uk/minutes/mintues.html

Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

None of the above are members of the APPG on ME.

In the case of Associate Parliamentary groups, applications for membership may be accepted by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. [...] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

The APPG on ME group’s current office holders and the twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi389.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME and The ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

AfME and the MEA alternate the task of minute taking and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

So none of the five national registered membership ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.

ME Research UK : a research organisation and a registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are sometimes listed as attendees in the minutes of meetings; their contributions to these meetings are minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

APPG on ME: Minutes and transcript, meeting 1 April 2009

The Minutes and a verbatim transcript of the APPG on ME meeting held on 1 April 2009 were published on 3 June by the APPG on ME secretariat.

The Minutes of the meeting of the All Party Parliamentary Group on ME dated 1 April 2009 can be viewed as a Word document here on ME agenda and are appended:

MINUTES APPG on ME 1 April 09

For a trial period, a verbatim transcript ofmeetings by a Hansard transcriber is also being made available. The transcript of the 1 April 2009 meeting can be read here (17 pages):

VERBATIM TRANSCRIPT APPG on ME 1 APRIL 2009

 

Note: Change of date for next meeting of the APPG on ME.

The date given at the end of the Minutes of the 1 April 2009 meeting was 24 June 2009.  This has since been changed to:

Wednesday, 8 July 2008

The next business meeting – and Annual General Meeting – of the All Party Parliamentary Group on ME at Westminster will be held be held on Wednesday July 8. It will take place in Committee Room 20, House of Commons, between 1.30pm and 3pm. Please watch the ME Association website for further details.

Minutes

All Party Parliamentary Group on M.E.

Chair: Des Turner MP
Vice-Chairs: Andrew Stunell MP
Tony Wright MP
Secretary: Ian Gibson MP (Ed: since stood down as MP for Norwich North)
Treasurer: David Amess MP

Minutes of the meeting of the All Party Parliamentary Group on M.E. held at 1.30-3pm, Wednesday 1 April 2009  Committee Room 20, House of Commons

Present

Parliamentarians
Dr Desmond Turner MP (Chair)
Andrew Stunell MP (Vice Chair)
Peter Luff MP

Parliamentary office representatives
Koyes Ahmed, office of Dr Turner MP
Ceri Finnayson, office of Edward Davey MP

Secretariat
Sir Peter Spencer (Action for ME)
Heather Walker (Action for ME)
Tony Britton (MEA)

Organisations and individuals
Dr Derek Pheby (ME Research Observatory)
Kirsty Haywood (Royal College of Nursing)
Sue Waddle (MERUK)
Paul Davis (RiME)
Jane Colby (Tymes Trust)
Doris Jones (25% Group)
Joy Birdsey (K&SAME)
Jill Cooper, Warks
Stephen Jones
Augustin Ryan
Alan Gold
Annette Barclay
Joan Duvey
Michelle Goldberg
Jill Cooper
Samantha Brown with Max Cotton (BBC Politics Show)

Apologies:

Parliamentarians: Anne Begg MP, Angela Browning MP, Andrew Dismore MP, William Etherington MP, Kelvin Hopkins MP, Dr Brian Iddon MP, Ann Keen MP, Kerry McCarthy MP, Iris Robinson MP, Rudi Vis MP, Countess of Mar, Lord Puttnam

Non-parliamentarians: Dr Charles Shepherd, MEA, Christine and Tanya Harrison, BRAME, Janice and Bill Kent, Member, Janet Taylor (Kirklees Independent ME Support Group), Ciaran Farrell.

1. Welcome

The Chairman welcomed those present and explained that the meeting was joined by Max Cotton, BBC Politics Show, who was filming for a future programme featuring a person with M.E., plus a transcriber from Hansard, who would produce a verbatim note of the meeting. The verbatim note would be made available in addition to more concise business minutes produced by the Secretariat.

2. Minutes of the last meeting

The meeting agreed to:

i. Delete from item iii.f: “He also asked if the services inquiry would cover research”, as this was not said by Paul Davis.

ii. State that the Strategic Framework Document that Nicky Zussman referred to at the APPG of 8th July 2008 was: “Children and Young People’s Emotional and Mental Health in East Sussex 2005 – 08. The Strategic Framework for Commissioning and Planning Services. Appendix 4: Mental health of children and young people – classifications and definition.”

3. Matters arising

The meeting agreed to:

i. note that the Welfare Reform Bill was proceeding through the House of Lords

4. APPG Inquiry on NHS service provision for people with ME

i. Committee: The Chair announced that the Parliamentarians who will be considering evidence would be: Dr Ian Gibson MP, Tony Wright MP, Andrew Stunell MP, the Countess of Mar, Baroness Finlay and the Chair, Dr Des Turner.

Later in the meeting (under Terms of Reference), Peter Luff MP said he would like to be party to the process of obtaining information from health authorities, at which point the Chair invited him to join the inquiry group.

ii. Terms of Reference: The Terms of Reference (ToR), amended following feedback after the last meeting, were circulated.

The amended ToR were discussed in detail. It was decided that: while the APPG accepted the WHO definition of ME, the inquiry recognised but could not be delayed by debates about terminology and would look at services on offer to people classified as having either ME or CFS (but see below). There would be no further consultation on the amended terms of reference.

iii. Inquiry questionnaires and submissions of written evidence:

a. There would be two questionnaires: one for people with M.E./carers, one for PCTs.

b. Questionnaires to PCTs would ask questions about the criteria for diagnosis and ask about the basis of estimates of people with M.E.

c. There would also be a patient survey.

d. People who were not at the APPG meeting would have a chance to give evidence.

e. Anonymity would be granted to people who are prepared to give evidence. No individual would be named in the inquiry report without their express consent.

f. The way in which patient outcomes are measured will include adverse reactions to treatment and people dropping out of treatments.

g. To capture current USFDA guidance on how the inquiry measures and understands patient outcomes, it should refer to the term “patient-reported outcome.”

h. Kirsty Haywood would provide the Chair with an advance copy of her paper on patient reported outcomes, as submitted to the journal of the Royal Society of Medicine.

i. ME sufferers, carers or professionals were all welcome to submit suggestions for specific questions that could be asked in the survey. The deadline for receiving ideas was 5 May.

j. It was recognised that the timetable was demanding and the scope of the inquiry was limited by lack of time and resources but the parliamentarians present agreed that such a timetable was necessary if the inquiry was to complete the evidence-taking process before the summer recess and publish a report before the run-up to the next general election.

k. A press release about the launch of the inquiry would be issued straight away.

iv. Inquiry website: it was hoped that a website, with full timetable details of the inquiry, would be up and running shortly.

5. Any Other Business

Two documents were tabled by the Secretariat on behalf of organisations who were not able to attend the meeting.

i. The first document tabled should have been a statement by the West Midlands ME Groups Consortium (WMMEG), entitled ME/CFS – Education and training in the NHS / NHS CCRNC conference. However, a supplementary WMMEG statement from 2007 was tabled instead, in error. The correct statement was circulated electronically, with apologies, the following day.

ii. The second document tabled related to Care Quality Commission proposals to make NICE recommendations (for all conditions) mandatory. This matter was brought to the attention of the APPG by BRAME.

It was suggested that a representative from the Care Quality Commission should be invited to address the next meeting.

6. Date of Next Meeting

24 June 2009 (subject to speaker availability)  (Ed: Since changed to Wednesday, 8 July)

Forward-ME, Countess of Mar: Minutes available

Ed: The Countess of Mar was shortlisted for a Social Welfare Champion award in the “Charity Champions Award 2008″ (in Association with ePolitix and the parliamentary publication, The House Magazine).

The Countess had been nominated by reMEmber (The Chronic Fatigue Society), a member of Forward-ME.   The Social Welfare Champion award was awarded to Barbara Keeley MP.

Forward-ME

http://www.forward-me.org.uk/

Ed: Forward-ME, the group convened by the Countess of Mar, was described in the Minutes of the APPG on ME meeting of 8 October 2008 as the “extended ‘Alliance’ group”.

I have been waiting since 20 November for Sir Peter Spencer to provide responses to my questions around the existing ME Alliance. See: 

http://meagenda.wordpress.com/2008/12/08/countess-of-mar-group-forward-me-website/

The website for Forward-ME is now live and Minutes of the meetings chaired by the Countess of Mar on 8 October and 18 October are now available.

From the home page:  http://www.forward-me.org.uk/

WHAT WE ARE – WHAT WE DO

Forward-ME consists of a fairly broad spectrum of charities and voluntary organisations invited by the Countess of Mar to meet from time to time. The Aim of Forward-ME is to promote effective joint working by ME and CFS organisations to maximise impact on behalf of all people with ME and CFS in the UK.

Forward-ME has no formal constitution. It exists to improve recognition, understanding, research, management, support and information for everyone whose life is affected by ME and CFS.

MEMBERSHIP

Membership of Forward-ME is by invitation, but any reasonable and constructive contributions to our deliberations from any individual or organisation representing people with ME will be considered by us.

PRINCIPLES OF WORKING

We seek to maximise consensus but respect those who have differing views.*

*Ed: RiME has been excluded from these meetings.

Members are free to opt in or out of specific group activities.

CONTACT US

By email to: Info@Forward-ME.org.uk

By Post to: Countess of Mar, Chairman Forward-ME, House of Lords, Westminster, London SW1A 0PW

Links to related organisations

These organisations all participate in the meetings convened by Forward-ME and their individual websites can be viewed using the links below.

Association of Young People with ME http://www.AYME.org.uk
Invest in ME http://www.Investinme.org
ME Association http://www.MEAssociation.org.uk
ME research http://www.meresearch.org.uk
Action for ME http://www.AfME.org.uk
Tymes Trust http://www.tymestrust.org
reMemberCFS http://www.remembercfs.org.uk/
25% ME http://www.25MEGroup.org
Blue Ribbon for awareness of ME http://www.Brame.org  

——————————————————–

Ed: Note that neither of these two meetings were attended by representatives for AYME and Invest in ME.

——————————————————–

Joint CFS/ME meeting on 8 October 2008

Opening statement

Countess of Mar

Welcome.

The trigger for my suggesting this meeting was my growing concern that very few MP’s attend the APPG meetings.

At the last one, as you know, by the end of the meeting there were only your Chairman and myself – preaching to the converted?

Until the message you want to convey is heard loud and clear by legislators and government your objectives will never be achieved.

I have been in the House of Lords for very nearly 33 years. I have taken an active role in some successful campaigns and have watched the progress of other winners. What comes to my mind immediately is that they have always been supported by a united, informed and determined base of people who want to win.

One of my husband’s favourite sayings is “emotion clouds reason”. I fully appreciate that ME is a physically and mentally sapping illness and that a failure to achieve can lead to emotional stress, dissent and division in the ranks. Over the years I have been made very aware of disagreements between the various representative organisations that, even when they are minor in fact, they are fairly major in effect. If I know about them then others who make the vital decisions at central and local level do so also. A difference of opinion – professional or lay, is a wonderful excuse for others to do nothing and doing nothing while going through the motions of construction is precisely what has been happening. I think of the CMO’s Report, the NICE Guidelines and all the advice emanating from the DoH and the DWP, for example.

I know that there are a lot of people with many brilliant ideas beavering away in their local communities. I have enormous respect and admiration for them. They are severely hampered by a lack of funds. Even if funds are made available, they are not powerful enough on their own to evade the bureaucratic sponges that soon mop up the cash.

Similarly, there are groups who collect money for research. They find scientists who, very often, will have a connection with ME and will conduct a small scale research project on a shoe-string. I cannot help but think that we could build upon the successes of MERUK, Professor Kerr and others if funds were pooled and the ME organisations were in position to demand that government match funding. This would lead to the provision of proper research facilities; would produce scientifically credible results, and would lead to acceptance of the reality of the disease by the professionals who have been so sceptical and have done so much damage.

I do hope that all of us here today will develop a strategy for bringing together all those who suffer from ME or are supporters and that we can then move on to transform the ME scene. Time is short so let’s go.

MINUTES OF THE FIRST JOINT ME/CFS MEETING HELD ON 8 OCTOBER 2008 IN THE HOUSE OF LORDS.

1. PRESENT:

Christine and Tanya Harrison – BRAME
Doris Jones – 25%ME Group
Bill and Janice Kent – remember*
Jane Colby – TYMES Trust
Peter Spencer – AfME
Sue Waddle – MERUK
Charles Shepherd – MEA

Margaret Mar – Chairman

*Ed: Registered with the Charity Commission as “reMEmber The Chronic Fatigue Society”

2. APOLOGIES: Mary-Jane Willows – AYME, Kathleen McCall – Invest in ME

3. WELCOME: The Chairman welcomed all the participants to the meeting. She explained the reasons for her invitation, what she saw as the objectives of all those working for people with ME and hoped that all those present would work together in order to achieve those objectives.

4. The Chairman invited each participant to make a brief statement of the aims and objectives of their organisation; what they believe have been the obstacles to progress; what solutions they propose and how they think the solutions should become actions.

5. OBSTACLES TO PROGRESS

Examples included:

(i) Nearly all the speakers were agreed that a major obstacle existed in the name and the image of the illness and until there was an agreed name progress would be difficult.

(ii) Guidelines issued by NICE, DWP and the NHS all produced difficulties for patients seeking appropriate treatment.

(iii) Ignorance and the attitude of medical professionals; misdiagnosis; the psychosocial/behavioural model and the lack of diagnostic guidelines caused major problems for patients.

(iv) Lack of biomedical research funding and of long-term follow-up of cohorts was mentioned.

(v) Disunity between UK ME charities and voluntary groups regrettably made it more difficult to address the above issues.

6. SOLUTIONS

Proposals included:

(i) ME should be separated from CFS and the WHO classification ICD-10 G93.3 should be adhered to. The fact that ME is also listed under the UK’s National Service Framework for long-term neurological conditions and that it is also listed as a neurological condition in the UK’s Read Code under F286 should be promoted.

(ii) All Government departments, particularly DoH, DWP and the Treasury, for example, should be challenged regarding (i) and asked to ensure that their guidelines comply with the listing.

(iii) Working in partnership, not only with other ME charities, but with others such as Disability Alliance and National Voices was essential.

(iv) Working together to raise awareness of the general public, the press and, in particular, of the medical profession of the seriousness of ME was also important.

(v) ME charities should work together to establish a strategy for biomedical research into disease mechanisms and with researchers and research organisations as well as the MRC to devise a common UK research agenda.

7. HOW ARE SOLUTIONS TO BECOME ACTIONS?

It was agreed that, whilst there were some differences of opinion on diagnosis and management between charities, these could be overcome if all agreed that there should be an open-minded approach to the challenges being faced. The Group agreed that they should be totally transparent in all their activities and that a website should be created upon which all papers, agendas and minutes of meetings would be placed.

It was suggested that the framework of the ME Alliance might be used as a vehicle for unity and that there should be an independent chairman. This would be discussed at the next meeting of the Group together with a constitution and activity programme.

8. NEXT MEETING.

It was agreed that meetings of the group should be chaired by an independent person and that the Countess of Mar should chair the next meeting.

The date of the next meeting to be arranged.

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

FORWARD-ME

MINUTES OF THE MEETING HELD ON

TUESDAY 18 NOVEMBER 2008

AT THE HOUSE OF LORDS

PRESENT:

Christine and Tanya Harrison – BRAME
Doris Jones – 25% ME Group
Bill and Janice Kent – ReMEmber
Jane Colby – Tymes Trust
Peter Spencer – AfME
Sue Waddle – MERUK
Charles Shepherd – MEA
Margaret Mar – Chairman

APOLOGIES: Mary-Jane Willows – Ayme [sic], Kathleen McCall – Invest in ME

MINUTES OF MEETING ON 8 OCTOBER 2008.

The minutes of the meeting were amended and agreed.

MATTERS ARISING

There were no matters arising from the minutes.

CONSTITUTION OF FORWARD-ME

After some discussion it was agreed that:

(i) Forward-ME would have no formal constitution.

(ii) Membership would be by invitation from the chairman.

(iii) For the time being, all references to ME would be ‘ME and CFS’.*

*Ed: One presumes because some members of the group are representatives of organisations that use “encephalopathy”, and two members of the group are representatives of an organisation which operates under and is registered in the name of “The Chronic Fatigue Society”.

NICE AND BELIEFS ABOUT ME and CFS

(i) There was extensive discussion on the processes by which NICE arrived at the Guidelines; the reasons for the deficiencies that were pointed out at the time of publication, and the problems that have arisen since.

(ii) Judicial Review was to take place on 11 – 12 February 2009.

(iii) The possibility of separating CFS and ME was discussed. It was suggested that, as the NICE Guidelines were to be reviewed during 2009, Forward-ME should consider making a submission to NICE. This would be discussed at the next meeting.

(iv) It was agreed that the differing views on the NICE guidelines and Judicial Review would be respected.

JOINT ACTIVITIES

A. Welfare Reform Green Paper

(i) The AfME and BRAME reports – No one written off: problems and potential solutions for people affected by chronic fluctuating conditions (see AfME website) and No one written off – BRAME’s response to the Welfare Reform Green Paper (see BRAME website) were discussed briefly.

(ii) It was agreed that the need to overcome the problem of patient derived evidence being dismissed as ‘grey material’ was pivotal. The means by which this was done for the CMO’s 2002 Report were discussed. Expert advice would be sought.

(iii) AfME and MEA would be monitoring experiences that PwME have with the new benefits system. Other charities and voluntary organisations were invited to contribute. The possibility of creating a common questionnaire was discussed. Interested members would initially combine their expertise in order to create an agreed format to be produced by early spring.

(iv) The questionnaire would be made available to anyone interested through the Forward-ME and respective charity and voluntary groups’ websites. The results would be analysed and published.

B. APPG Inquiry into NHS Services for People with ME

(i) Whilst the Inquiry was welcomed in principle there were several practical problems including timing, questionnaire and resources, all of which would have to be resolved by the APPG.

C. Research Agenda

(i) It was agreed that charities and voluntary groups should act together to press the MRC to take more positive action to bring about biomedical research into disease mechanisms as a matter of urgency. This scientific research should address essential questions about the aetiology and pathogenesis of the illness with a view to developing preventative and curative treatments, as well as a diagnostic test.

(ii) The valuable contributions charities and voluntary organisations can make to research include patient participation, funding pilot studies and promoting research findings. To this could be added in future (subject to funding), funding research fellowships and PhD student grants.

(iii) AfME and MEA had been invited to a meeting with Professor Stephen Holgate and his new MRC advisory group. This would take place on 15 December 2008 and would include discussion about the framework for a workshop to be held in 2009. They would report back to the next meeting.

FORWARD-ME WEBSITE

(i) ‘Forward-ME had been registered on the internet and the website address was www.forward-me.org.uk. A web manager had been appointed.

(ii) The site would be kept simple, with links to the other charities and voluntary organisations which would be free to publish any documents they had submitted to Forward-ME if they wished.

(iii) All material to be put on the site would have the prior approval of members of the group.

ANY OTHER BUSINESS

(i) there was some discussion about a private letter written to a correspondent by the chairman in which she outlined her views on NICE and CBT/GET. She responded to several questions from the 25% ME Group.

(ii) It was suggested that Forward-ME could look at the shortcomings in NHS provision including waiting lists and availability of consultants. It was agreed that this was what the APPG was proposing to examine and that Forward-ME should not pre-empt the APPG inquiry.

DATE OF NEXT MEETING

The date of the next meeting to be arranged.

Ed: I can find no copies of the positions statements which some organisations submitted prior to the meeting or handed round at the meeting itself. The position statements of The 25% ME Group and Invest in ME can be read at the end of this posting on ME agenda.  I had been advised that it had been planned to publish these on the Forward-ME website.

http://meagenda.wordpress.com/2008/11/10/the-countess-of-mars-meeting-with-me-patient-organisations/

APPG on ME: Minutes of meeting, 8 October 2008

APPG on ME: Minutes of meeting, 8 October 2008

PDF of Minutes (12 pages)

Minutes 8.10.08

 

APPG minutes of meeting held on 8 October 2008

Published: 15 December 2008

The next meeting of the APPG is likely to take place in February (date and speaker to be confirmed).

Further information about the proposed NHS services inquiry will be one of the items on the agenda.

http://www.afme.org.uk/res/img/resources/APPG%20minutes%208%20October%202008.pdf

All Party Parliamentary Group on M.E.

Chair: Des Turner MP

Vice-Chairs: Andrew Stunell MP; Tony Wright MP

Secretary: Ian Gibson MP

Treasurer: David Amess MP

Minutes of the meeting of the All Party Parliamentary Group on M.E. held at 4pm, Wednesday 8 October 2008

Committee Room 17, House of Commons

Present

Parliamentary

Dr Des Turner MP (Chairman)

Andrew Stunell MP (Vice Chairman)

Tony Wright MP (Vice Chairman)

Rt Hon Tom Clarke MP

Kerry McCarthy MP

Janet Dean MP

Damian Green MP

Sir Robert Smith MP

The Countess of Mar

James Bolton, DWP

Phill Wells, PS, Mr Purnell

Koyes Ahmed, Office of Des Turner MP

Secretariat

Tony Britton (MEA)

Dr Charles Shepherd (MEA)

Sir Peter Spencer (Action for M.E.)

Heather Walker (Action for M.E.)

 

Organisational representatives and people with M.E.

Jane Colby (Tymes Trust)

Christine and Tanya Harrison (BRAME)

Joy Birdsey (Kent and Sussex Alternative Group for ME)

Doris Jones (25% Group)

Janet Taylor (Kirklees Independent ME Support Group)

Di Newman (Peterborough ME and CFS Self-Help Group and Cambridgeshire Neurological Alliance)

Bill and Janice Kent (reMEmber)

Barbara Robinson (Suffolk Youth and Parent Support Group)

Page 2

Sue Waddle (MERUK)

Paul Davis (RiME)

Natasha Posner

Annette Barclay

Ciaran Farrell

Augustine Ryan

Stephen Jones

Apologies

Janet Anderson MP, Tim Boswell MP, Peter Bottomley MP, Graham Brady MP, Kelvin Hopkins MP, Baroness Howe of Idlecote, Dr Brian Iddon MP, Elfyn Llwyd MP, John Leech MP, Ann McKechin MP, Eddie O’Hara MP, Ken Purchase MP, Baroness Jo Valentine, Rudi Vis MP, Sir Nicholas Winterton MP.

1. Welcome

Dr Turner welcomed everyone to the meeting and introduced the main speaker, The Rt Hon James Purnell MP, Secretary of State for Work and Pensions, who was accompanied by James Bolton, Deputy Chief Medical Adviser at the DWP.

Countess of Mar group Forward-ME website

Today, AfME (Action for ME) publishes the Christmas 2008 issue of InterAction magazine.

On Page 9, AfME announces the URL for the website for this group that was instigated by the Countess of Mar.

From Page 9, InterAction 66 Christmas 2008

http://www.afme.org.uk  

Countess of Mar

The Countess of Mar, a long-time supporter of people with M.E., met representatives from Action for ME, BRAME, ME Association, ME Research UK, 25% Group, TYMES Trust and reMEmber on 8 October to identify areas of common ground. AYME and Invest in ME were invited but unable to attend. The Countess found that agreement exists on 80-90% of issues and concluded that there was therefore a case for creating a new forum for M.E. charities. When asked if she would lead such a group, she agreed to chair the next meeting.

The meeting was held on 18 November. It was decided to call the forum FORWARD ME and to adopt the aim of promoting effective joint working by M.E. organisations to maximise their impact on behalf of people with M.E. in the UK.

The website is www.forward-me.org.uk . It will promulgate actions and decisions taken and details of specific joint activities.

Ends

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

Ed: RiME has not been invited to attend these meetings.

Meanwhile, Action for ME’s Sir Peter Spencer has yet to provide a response to the following:

sent to:

To: ME Alliance: Heather.Walker@afme.org.uk  ; peter.spencer@afme.org.uk  ; charles.c.shepherd@btinternet.com  ; tbritton02@yahoo.com

Re: Current status of the ME Alliance

It was understood that the existing ME Alliance was anticipated to be reconvening earlier this year.
I should be pleased if you could clarify the following:

1] Is the ME Alliance still extant?

2] Who are the current members of the ME Alliance?

3] Does the ME Alliance currently have a convener and who is the convener?

4] When did the last meeting of the ME Alliance take place and which organisation reps were present at that meeting?

5] Has a date for a future meeting of the ME Alliance been set and when is the next meeting anticipated to be held?

6] Does the current ME Alliance have a constitution, mission statement or statement of objectives and if so where can these be accessed?

7] Does the ME Alliance intend to publish an agenda, minute, note or summary of any meetings it might hold in the future?

There has been much speculation amongst the ME community about whether the meetings being held by the Countess of Mar are a “new Alliance” or a “Reformed Alliance” which has replaced the “old Alliance”.

Given that very little information about the existing ME Alliance has been issued over the last couple of years since the departure from Action for ME of Chris Clark, and given the evident confusion about the current status of the ME Alliance it would be appropriate for a statement to be issued clarifying the situation and responses provided to the queries raised above.

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

These questions were first raised with AfME on

20 November 2008

I shall be writing again, this morning, to Sir Peter Spencer for a clarification.

Forward-ME and The Countess of Mar

Forward-ME and The Countess of Mar

In the last couple of days, the ME Association has announced that its December on-line survey concerns the NICE guideline on ME/CFS.

You can read the MEA’s notice here:

http://www.meassociation.org.uk/content/view/713/70/

This “Quick Survey” is in the right hand frame of the Home page

“The MEA Quick Survey on the NICE Guideline”

Vote on-line at: http://www.meassociation.org.uk  

“The MEA thinks the NICE guideline on ME/CFS is unfit for purpose and needs to be re-written”

[Options]

I agree
I’ve got no opinion either way
I disagree

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

When an option is selected the current percentages are apparently displayed.

Any Tom, Dick or Harry can vote.

But to what use does the MEA intend to put the results of its “Quick Survey” on the “fitness for purpose” of this guideline that is up for Judicial Review in the High Court, in February next year? The guideline was published in August – why a survey now?

Has anyone thought to ask the MEA what use it intends to make of the results and what value it thinks this uncontrolled online “survey” exercise will have?  Why are so few people asking questions of our patient organisations and challenging them on their activities? 

Given the MEA considers the NICE Guideline “unfit for purpose and needs to be re-written” one might have expected a position statement in response to Lady Mar’s own views and opinions on the guideline – for a couple of weeks ago, the Countess came out with a shocker: she is “greatly saddened that there is so much hostility to the NICE Guidelines and, specifically, to CBT/GET.”

[ Read full letter to RiME here : http://meagenda.wordpress.com/2008/11/19/correspondence-between-rime-and-lady-mar/ ]

Is this “Quick Survey” on NICE a public relations exercise intended to reassure the ME patient community that the MEA really is behind the JR and to divert attention away from the Countess’s bombshell, a couple of weeks ago, in lieu of the position statement we have all been waiting for? Is this all we are going to get? 

The Countess of Mar is a Patron to The 25% ME Group, to ME Research UK, to BRAME and to The Young ME Sufferers Trust. The 25% ME Group has already issued its position statement and you can read it here: http://meagenda.wordpress.com/2008/11/21/statement-from-the-25-me-group/

But what is the 25% ME Group going to do now?

In mid 2006, Shirley Conran, Patron to The Young ME Sufferers Trust, shocked and dismayed the ME community when she took on the role of ambassador for Barts, appearing in media articles endorsing the Barts Chronic Fatigue Service.

Ms Conran remains a Patron to the The Young ME Sufferers Trust.

The Trust has not published its position on “the Countess of Mar issue”. However, Jane Colby has sent out the following message to some local organisations who are “Partner Groups” to this children’s charity.

In the TYMES Trust’s “Partner Group” Memo No. 4, 2008, Ms Colby writes;

Forward-ME

There have been a lot of rumours about the Countess of Mar’s new group Forward-ME.

For confirmation; nothing in the Trust’s work has changed and any statements the Countess makes in her correspondence about the NICE Guideline are purely her personal view, as she herself has pointed out.

The way the Trust works and the stance we take to ME remains the same, wherever and with whomever we meet for discussion.

Our view is that ME should be separated from CFS and we still consider it to be essentially an enteroviral illness, although of course there are many other factors in any illness compounding the effects of the infecting agent; these factors affect host response and they include whether or not any other infections or traumatic incidents have occurred at the same time as the enteroviral infection, which itself can produce minimal symptoms in the beginning, with the complications following on.

 

In June, this year, The ME Association and The Young ME Sufferers Trust put out a joint position statement on Graded Exercise Therapy (GET), which is frequently delivered in tandem with Cognitive Behavioural Therapy (CBT).

In a joint statement these two organisations said:

“The ME Association and The Young ME Sufferers Trust today jointly reject this week’s call for the number of graded exercise therapists to be increased. This is because of our serious concern for the safety of patients given this controversial approach to management [...] The ME Association and The Young ME Sufferers Trust are therefore jointly calling for an urgent review of the NICE recommendation that everyone with mild or moderate ME/CFS should be automatically offered a course of GET.”

But in a second communication to Paul Davis of RiME, on 24 November, Lady Mar has written:

“That some doctors and consultants are unaware of, or will not follow, the NICE Guidelines I well know and I make every effort to put this right when I can.”

So, here is a patient organisation Patron endorsing a guideline that is condemned by TYMES Trust, condemned by the MEA and by virtually all patient organisations, apart from AfME.

TYMES Trust is rationalising its condemnation of the NICE Guideline with the incongruent views and opinions of its Patron on the basis that these are the Countess’s “personal views” – just as Jane Colby had done in 2005, over the Barts CF Clinic issue. 

 

Lady Mar has said that the purpose of her meetings is to the bring patient organisations together – but we already have an ME Alliance.  If the ME patient community considers that the existing Alliance should be opened up to other representatives are we not capable of negotiating for inclusiveness ourselves?  I very strongly object to a chronic fatigue organisation being given a seat at this table while RiME has been deliberately excluded.

Note that this initiative of Lady Mar’s, originally presented as a one-off meeting to discuss “areas of common concern”  has now become a “Group”; note that this “Group” now has a name: Forward-ME.

Yesterday, I wrote:

“Those (selected organisations) whose reps were invited to the Countess of Mar’s two meetings have been given a platform to discuss this [proposed APPG] Inquiry. But the ME community has been marginalised from these discussions and was told there was to be no wider consultation process. These (two hour) caucus meetings being held and chaired by the Countess of Mar are being used to discuss an issue – in this case, the Inquiry – that should have been allocated time for full and proper and open discussion at APPG meetings. What other issues might be taken away from APPGs for behind-closed-doors discussion with selected organisations to be fed back into the APPG? This is exactly what I predicted would happen.”

How can these organisation reps continue to sit round a table at caucus meetings convened and chaired by this unelected parliamentarian who is “greatly saddened that there is so much hostility to the NICE Guidelines and, specifically, to CBT/GET” ?

Is this the way forward and who is steering the ship?

____________________________

Suzy Chapman

02 December 2008