APPG meeting, January 22 – revised personal summary

January 25, 2008

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

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

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


Committee Room 17, House of Commons



Ian Gibson MP

Kerry McCarthy MP

Andrew Stunell MP

Tony Wright MP

Countess of Mar

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


AfME: Sir Peter Spencer and Heather Walker

MEA: Tony Britton and Dr Charles Shepherd

National ME charity and ME organisation representatives:

25% Group: Doris Jones

AYME: Mary Jane Willows

BRAME: Christine Harrison

MERUK: Sue Waddle

RIME: Paul Davis

Tymes Trust: Jane Colby

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

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


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


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

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

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

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

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


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

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

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

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


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

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

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

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

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

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

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

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

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

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

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



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


The meeting closed shortly before 6pm.

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

Ann Keen website

Personal comment: As has been noted many times before, MPs have a vast range of options when it comes to how they spend their time at Westminster. Although membership of the ME APPG is quite high, very few MPs and members of the House of Lords actually manage to come along to the meetings. Those that do tend to be regular supporters who are prepared to tolerate what can be prolonged and unpleasant interventions that involve only a very small section of the ME community who attend these meetings. But there are other members of the APPG who are not prepared to attend if this sort of activity is going to take up a significant part of what are normally fairly short and time limited meetings.

Dr Charles Shepherd

Hon Medical Adviser, The ME Association

28 January 2008

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