ME Association: Summary of meeting of APPG on ME 2 December 2009

Ed: Note that Dr Charles Shepherd has used this unofficial summary of the APPG on ME meeting to advance his personal opinion on what he considers to have been unacceptable behaviour by a member of the public.

It has not gone unnoticed or unremarked upon that at the previous meeting of the APPG, in October, the Chair of the Sussex and Kent ME and CFS Society, had addressed another member of the public in a manner which has been reported by several of those in attendance at that meeting as having been grossly inappropriate.

When Dr Shepherd had written up his summary of the October meeting, that section of the procedings was reported only as “…a very lively discussion on the current state of NHS services for people with ME/CFS.”

I do not consider that Dr Shepherd should be using summaries published in the name of the ME Association to further his personal views and opinions on matters that are the purview of the Chair, nor should he presume to speak on behalf of the “vast majority of people with ME/CFS who were present on Wednesday, or were being represented”.

As joint secretariat, Action for M.E. and the ME Association undertake the circulation of minutes and agendas for these meetings but they are not members of the APPG on ME 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.

Shortlink: http://wp.me/p5foE-2sj

ME Association: Summary of meeting of APPG on ME 2 December 2009

Friday, 04 December 2009 11:09

This is a fairly detailed summary of the meeting of the All Party Parliamentary Group Group (APPG) on ME held in Committee Room 11 at the House of Commons on Wednesday 2 December, 2009.

The meeting lasted from approximately 3.15pm till 4.45pm.

Please note that this is a personal summary and not the official APPG Minutes. These will appear later.

ATTENDANCE

Parliamentary:

Dr Desmond Turner MP – Chair
Countess of Mar – Secretary
Andrew Stunell MP – Vice Chair

Koyes Ahmed – Office of Dr Turner MP

Rt Hon Mike O’Brien – Minister of State for Health Services at DoH
Accompanied by three DoH officials

Secretariat:

Tristana Rodriguez (AfME)
Sir Peter Spencer (AfME)
Dr Charles Shepherd (MEA)

ME/CFS charities and organisations:

Jill Cooper – Warwickshire Network for ME
Paul Davis – RiME
Doris Jones – 25% Group
Bill and Janice Kent – ReMEmber
John Sayer – ME Support Norfolk
Janet Taylor – Independent Kirklees ME Support Group
Mary Jane Willows – AYME

Others:

Several people with ME/CFS, and carers, attending in a personal capacity
Dr William Weir – infectious disease specialist
Television production company that is making a documentary about ME/CFS

NB: This is not a complete list of everyone who attended because I did not have the opportunity to check on the attendance book at the end of the meeting. So apologies to anyone who has not been included. If anyone does want their name added please let me know.

BACKGROUND: THE MEETING

The main purpose of this meeting was to discuss the APPG Report into NHS Service Provision for people with ME/CFS.

The Rt Hon Mike O’Brien, Minister of State for Health Services at the Department of Health, arrived shortly before the start. He was there for 45 minutes to listen to the key findings, give a short presentation, and then answer questions before leaving promptly (as ministers do!) at 4pm. The Minister had received a copy of the interim report prior to the meeting – so he was already aware of the contents.

Unfortunately, the meeting got off to an extremely regrettable start – all due to a very small section of the audience making repeated and sometimes very aggressive interruptions about various administrative matters. As a result of this gross discourtesy to the Minister, the time available for the ministerial response was being steadily eroded. Despite several polite requests from the Chairman, the interruptions continued. As a result, the Countess of Mar terminated her involvement with the meeting. The Chairman then stated that he would either terminate the meeting or arrange for those involved to be removed from the committee room by the House of Commons police if their interruptions continued. Shortly after, those involved calmed down and we managed to start dealing with the real business of the APPG report.

On a personal note I am very much in favour of public attendance/contribution at these meetings. However, it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters. And it could well be that after the Election, when the APPG will have to be reformed, it will be very difficult to find enough parliamentarians who are willing to take on an active APPG role. We just cannot afford to risk losing the support of distinguished parliamentarians like the Countess of Mar. It also needs to be said that the vast majority of people with ME/CFS who were present on Wednesday, or were being represented, had come to hear about the report, listen to the Minister, and then ask difficult questions about NHS services – they did not want to take up valuable time listening to complaints about the minutes and APPG administration. This could (and should) have waited till after the Minister had left.

APPG REPORT INTO NHS SERVICE PROVISION FOR PEOPLE WITH ME/CFS

NB: A copy of the interim report, along with the APPG press release, can be accessed by clicking here.

Des Turner started by explaining that the APPG had originally intended to publish the final report at this meeting. However, it was felt that an interim report was more appropriate at this stage. This was mainly due to the practical difficulties faced by a group with very limited resources – both staff and financial – who were bringing together and summarising the large amount of evidence that had been received.

Des Turner apologised for the fact that people had not had adequate time to read the interim report. He explained that the APPG, which has had only limited administrative support, had been very pushed for time when it came to analysing the evidence and arriving at recommendations, with the final version only being printed at the end of last week.

Des Turner carefully went through the 11 key recommendations contained in the interim report and briefly explained why they had been made in relation to the evidence sent into the Inquiry..

Mike O’Brien then made a ten minute statement relating to the recommendations contained in the interim report. Key points to emerge from the ministerial statement include:

• The 2002 Chief Medical Officer’s report had been a major turning point for people with ME/CFS – but the system (ie the NHS and DoH) had not responded adequately and put into place the various clinical, administrative and funding pathways that had been recommended by the CMO report.

• The APPG report was another milestone.

• The recommendations set out in the APPG interim report were sound and blatantly obvious.

• There was a real problem with ME/CFS when it came to ensuring that care pathways meet individual needs – which obviously vary considerably in relation to symptoms, severity etc in ME/CFS.

• The system responds to simple straightforward needs – not to complex conditions like ME/CFS.

• There were big differences in opinion amongst patients and clinicians when it came to management of ME/CFS, especially in relation to CBT and GET. This made life difficult for service providers.

• The problem is at a local level because ministers no longer rule from Whitehall and tell primary care trusts (PCTs) how to spend their money.

• The CMO report should have triggered PCTs to take action but some have not responded.

• Some PCTs are providing a good service; some a mediocre service. Others are not responding to the needs of people with ME/CFS at all – partly as a result of uncertainty and/or scepticism about the illness by their medical advisers. This type of inaction was not acceptable.

• ME support groups need to work together and pursue the case for new or better services at a local level.

• The need for accurate information on numbers was acknowledged (Recommendation 1). The challenge was how best to obtain this complex epidemiological information.

• There was a case for creating a National Service Framework for ME/CFS (Recommendation 2)but more hard evidence about the illness was needed.

• Acknowledgement of the need for more biomedical research (Recommendation 9) – he will write to the Medical Research Council (MRC) and ask for more work to be done.

• Acknowledgement of the problems faced in relation to DWP benefits and recommendation 10 in the report. The DWP did not deal very well with ME/CFS.

Before leaving at just after 4pm the Minister took a handful of questions from the floor. Among the topics covered in this question and answer session:

• From Janet Taylor: How the local ME/CFS Group in Kirklees, Yorkshire had used the existing evidence to persuade their service provider that ME/CFS should be regarded as a neurological illness

• From Charles Shepherd – What could people do if a PCT refused to provide a service? CS pointed out that there would be a major scandal if a PCT decided that it would not provide a service for people with cancer and the DoH would not allow this to happen. The Minister again refused to agree that the DoH should be more proactive in putting pressure on PCTs that refuse to set up a service.

• From Janice Kent – The Lightning Process. Janice Kent referred to the situation in Sussex. The Minister was obviously well informed about the Lightning Process and the controversy that surrounds it. It appeared that he was sympathetic to research into the use of the Lightning Process.

• From Peter Spencer – the Medical Research Council Peter Spencer pointed out that lack of services are linked to lack of research. The Minister acknowledged this was a valid point and he would therefore write to the MRC to highlight the need for more biomedical research.

Overall, Mike O’Brien listened carefully to what was being said and gave the impression that he understood (and had sympathy with) the anger about research, services and benefits. However, many of his answers were political rather than entering the territory of real practical solutions. think most people were just not convinced by the way in which the blame for lack of services is constantly passed to the PCTs with the explanation that the DoH cannot tell them what to do or how to spend government health money.

MEA STATEMENT ON THE INTERIM REPORT

BACKGROUND

The All Party Parliamentary Group (APPG) on ME has published an interim report on its Inquiry into NHS Services in England for people with ME/CFS.

The Inquiry has been taking placing during the course of this year.

The Inquiry was initiated as a result of widespread concerns about the way in which this illness is diagnosed and managed in both primary and secondary care.

The Inquiry took written and oral evidence from patients, carers, charities, clinicians and service providers.

MEA COMMENTS

We very much welcome the key recommendations contained in the interim report.

They reflect almost all of the key issues that people with ME/CFS feel very strongly about.

In particular, they are very concerned about the postcode lottery which means that some people have no NHS referral service at all whereas others are referred to services which place far too much emphasis on behavioural managements such as CBT and GET. These are approaches that some people with ME/CFS find ineffective or, in the case of GET, make their symptoms worse. We therefore hope that NICE will seriously address the recommendation in the report to thoroughly review their guideline advice about CBT and GET.

The MEA believes that the current lack of services for children, adolescents and the severely affected is a national scandal. As recommended in the interim report, this deficit must now be addressed by the PCTs – many of whose Chief Executives did not even bother to respond to the request for information from the APPG.

Finally, we agree that there needs to be sound research carried out into the underlying physical cause and epidemiology of ME/CFS. The epidemiological research could involve the research networks that have been set up within primary care. Epidemiology should also build on the primary care disease register that has been set up and developed as one of the strands of epidemiological research carried out through the ME Observatory. NB: The disease register now contains details on around 500 cases, including the severely affected cohort which has been transferred from the CHROME database.

KEY FINDINGS AND RECOMMENDATIONS FROM THE INTERIM REPORT

• The Department of Health must undertake research to accurately assess the number of people with ME/CFS.

• Recommendations from the 2002 Chief Medical Officer’s report regarding service provision must be addressed.

• All PCTs should ensure that they provide a full range of diagnostic and physician-led management services for people with ME/CFS.

• PCTs must ensure that there are adequate services for children and adolescents.

• The needs of the severely affected should be given high priority.

• PCTs should have meaningful consultation with patients and local groups about services and service development.

• A National Service Framework for ME/CFS should be created.

• The Royal Colleges must ensure that medical students receive training in both diagnosis and management.

• Professional organisations responsible for other health professionals must also ensure proper training and continuing professional development .

• The Department of Work and Pensions should review its guidance in relation to benefit assessments.

• NICE should review its guideline on ME/CFS – especially the sections on CBT and GET.

• The APPG welcomes the Medical Research Council initiative which places emphasis on the need for biomedical research into the underlying cause of ME/CFS.

OTHER ISSUES DISCUSSED AT THE MEETING

APPG LEGACY PAPER

A copy of the current draft is available in the paperwork for the meeting. This can be found in the MEA website news section.

Further comments can still be submitted to the APPG. This matter will be considered again at the next APPG meeting in 2010.

XMRV RESEARCH

Charles Shepherd presented a brief summary on current research activity relating to XMRV.

Notes from this presentation:

Everyone is by now familiar with the XMRV research findings from America.

This is a brief update on what is happening regarding follow up studies.

Clearly, there is an urgent need to see if other research groups, in other countries, using other laboratories, can replicate the American findings.

Patient selection is very important. Studies involved stored blood samples are going to have difficulty in finding samples from people who meet both Fukuda and Canadian diagnostic criteria – as were used in the American study. But this should be less of a problem when using new clinical cases.

If the results are consistently replicated, we can then move on to looking at the pathogenicity of the virus (ie is it a disease causing virus) and even antiviral treatment.

XMRV was discussed in some detail at the Medical Research Council Expert Group Workshop on November 19/20 where there were four UK researchers present who are actively involved in XMRV research:

• Dr Jonathan Stoye – National Institute for Medical Research
• Dr Kate Bishop – NIMR
• Dr Jonathan Kerr – St George’s Hospital
• Dr Suzanne Hagan – Glasgow Caledonian University

There are several other UK virologists involved with XMRV research as well – including Prof Greg Towers at University College. London, whom CS recently met for an afternoon discussion.

So replication studies and other XMRV research is taking place, or is about to take place, here in the UK.

MERUK plus IRISH ME TRUST has just funded an XMRV replication study in Sweden.

The MEA Ramsay Research Fund has money available for UK studies – but money does not appear to be an immediate problem in the UK.

It looks as though there may even be some early results from replication studies before the end of the year.

On the subject of blood donation, the MEA has been in correspondence with the Chief Medical Officer, Sir Liam Donaldson – who has repeated the guidance that people with ME/CFS should not donate blood until they have fully recovered. Various expert groups are considering the implication of XMRV being present in the healthy population in relation to blood donation – in view of the US prevalence figure of around 4%.

Version 4 of the MEA position statement on XMRV, which includes the exchange of correspondence on blood donation with the CMO, can be found on the MEA website.

ACCESSIBILITY OF VENUES FOR FUTURE APPG MEETINGS

There was a short discussion on the pros and cons of using meeting rooms in either the House of Commons or Portcullis House for future APPG meetings. Des Turner pointed out that one of the problems with Portcullis House is that the large rooms are very heavily booked and the small rooms are too small.

DWP EMPLOYMENT AND SUPPORT ALLOWANCE

Des Turner referred to the continuing difficulties people were having with the new ESA and the need for people to notify the charities when serious problems were arising. A short discussion followed, which included reference to the various measures – appropriate and inappropriate – that are being used to try and help people back into work and the difficulty in finding suitable welfare rights advisers.

WELFARE REFORM BILL

Peter Spencer referred to a briefing paper that had been prepared by himself and the Countess of Mar. This can be accessed in the APPG paperwork on the MEA website. It was pointed out that the Countess of Mar had put a lot of work during House of Lords business into trying make changes to this legislation on behalf of people with ME/CFS.

ANY OTHER BUSINESS

With the close of the meeting imminent there was only time for short discussions on concerns relating to the change of name of the CNRCC to the British Association for CFS/ME, and how this organisation operates within the NHS (raised by Jill Cooper) and some further criticisms of the Lightning Process.

DATE OF NEXT MEETING

It was agreed to try and hold one further meeting, possibly in February 2010, before the General Election takes place – presumably in May 2010.

After the Election, there will need to be a meeting to reform the APPG. At present, it looks as though this could be taking place in late May or June, which would probably mean no other meetings before the 2010 summer recess.

Prepared by Dr Charles Shepherd
Hon Medical Adviser and Trustee

The ME Association

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