All Party Parliamentary Group on ME – Minutes of the 22 June 2011 meeting

July 25, 2011

All Party Parliamentary Group on M.E.
Chair: Annette Brooke MP
Vice-Chairs: Countess of Mar Ian Swales MP
Treasurer: Martin Vickers MP
Secretary: Russell Brown MP

Meeting held Wednesday 22 June 2011
Room C, 1 Parliament Street



Annette Brooke MP, Ian Swales MP, Russell Brown MP, David Amess MP, Countess of Mar

Sir Peter Spencer (Action for M.E.), Dr Charles Shepherd (ME Association), Tristana Rodriguez (Action for M.E.)

Mary-Jane Willows (AYME), Jane Colby (Tymes Trust)

Parliamentary office representatives:
Alex Dunn (Office of Ian Swales MP)

Dame Anne Begg MP, Nicholas Soames MP, Mark Pritchard MP, Hugh Bayley MP, Bob Russell MP, Caroline Lucas MP, Lord Puttnam, Priti Patel MP, Oliver Heald MP, Kerry McCarthy MP, Elfyn Llwyd MP, Jeffrey Donaldson MP, Robert Walter MP, Gary Streeter MP, Bill Wiggin MP, Roger Gale MP, Invest in M.E.

1. Welcome by the Chair

The Chair welcomed all to the meeting and also formally congratulated the Countess of Mar on winning the 2011 Outstanding Achievement title in the eighth annual Dodds Charity Champion Awards.

The Chair clarified that Invest in M.E., AYME and Tymes Trust had been invited to attend subsequent meetings of the APPG,. She explained that they would not be members because membership is restricted to serving Parliamentarians. She would be very happy to take on considered representations of other national organisations who would like to attend. The Group agreed that MERUK should also be invited to attend future meetings. Invest in M.E. had sent apologies that they could not attend this meeting, but had tabled a letter to the Group including points that they would like to contribute to the debate which are summarised below:

 Where do the doctors who are not experienced in M.E. go to ask for advice in the UK when they encounter severely ill children with M.E.? . . . Healthcare staff are generally not being given the correct advice or training.
 Invest in M.E. opposes the SMILE (Specialist Medical Intervention & Lightning Evaluation) study which is investigating the effectiveness of the Lightning Process in the treatment of children diagnosed with M.E.
 Why is the emphasis not put on promoting, funding and implementing biomedical research into M.E.?

2. AGM

Office holders were elected as follows:

Chair:Annette Brooke MP
Vice-chairs: Countess of Mar, Ian Swales MP
Secretary: Russell Brown MP
Treasurer: Martin Vickers MP

3. Speakers: Jane Colby, Executive director, Tymes Trust) & Mary-Jane Willows, CEO, Association of Young People with ME (AYME)

Key points from the discussion were as follows:

 Dr Jane Colby comes from a background of being a head teacher for many years, was a GPs wife, and has M.E. In 2010,The Tymes Trust won the Queen’s Award for Voluntary Service.
 The main concern under discussion today is the number of families of children with M.E. who are investigated on suspicion of abuse without reasonable evidence to suspect this is the case. Misunderstanding of the symptoms of M.E. sometimes lead to the mistaken belief that neglect or abuse is taking place. Jane illustrated these concerns with several examples.
 Mary-Jane Willows told the Group that she is currently supporting 56 crisis cases on behalf of AYME.
 AYME is calling for:

a directive to be issued by the Royal College of Paediatrics and Child Health (RCPCH) that all paediatricians should follow the College’s guidelines when treating children and young people with M.E.
All GPs and paediatricians to receive training about M.E.
All parents under suspicion of putting their child at risk to be informed of their rights in writing and given details of organisations who can support them.
The cost of pursuing these cases to be investigated as a matter of urgency.

A discussion and question and answer session followed:

 The Countess of Mar made the point that when an investigation is initiated because of a suspicion that parents are abusive, even if no evidence is found, this information will be kept on their records permanently.
 The Chair asked whether this problem only occurs in England. Jane Colby replied that this is the case across the UK.
 Ian Swales MP quoted from the Tymes Trust 1report on Child Protection issues and commented that it was striking that no case of abuse against the parents of a child with M.E. appears ever to have been proven.
 Dr Charles Shepherd said that the main issue seems to be with Social Services, and Sir Peter Spencer agreed. Ian Swales MP said that perhaps this is the first issue to tackle.

The Group agreed to:

 Arrange a meeting with the Royal College of Paediatrics and Child Health
 Invite Tim Loughton MP again to speak to the Group
 Invite the Chief Inspector of Social Services to speak to the Group

4. Minutes of the last meeting

The minutes of the meeting held on were approved by the group as a true record.

Ian Swales MP commented that it would have been helpful to include the dates of the MRC
call for research proposals.

The secretariat agreed to supply the following note taken from the MRC calling notice at:-

Key dates are listed below:
Task Date
Launch call 22 February 2011
Submission deadline 7 June 2011
Peer review (external) June 2011 – September 2011
Applicants’ response October 2011
Prioritisation Panel meeting November 2011
Applicants receive notification of outcome November 2011
Awards announced December 2011

5. Welfare Reform Update

The Group were briefed on welfare reform by the paper tabled by the secretariat. Ian Swales commented that he had been on the Welfare Reform Bill Committee, and that assessment of eligibility was determined to be the major issue.

Sir Peter Spencer made the point that there is a great deal of anxiety in relation to the planned 12 month limit on payment of contribution-based Employment & Support Allowance (ESA).

The Chair commented that a meeting dedicated to Welfare Reform would be planned and that the Group could invite Maria Miller MP to speak.

6. Research Update

The Group were briefed on research by the paper tabled by the secretariat.

Dr Charles Shepherd said that the ME Association and Action for M.E. have each been involved in sponsoring applications for research funding in response to the MRC’s recent call for proposals.

Dr Charles Shepherd and Sir Peter Spencer reported that it looked likely that the Biobank implementation project that their two charities are cofunding with the probable addition of a third, will begin around late July or soon after. The detailed proposal has been extensively peer reviewed by the MRC to ensure that the biobank is of sufficiently high quality to have a reasonable expectation of long term funding by a major institution.

The Chair told the Group that at a meeting of representatives for the Group with Invest in M.E. on 19th May 2011 it was widely agreed that what is most needed is a centre of excellence. Sir Peter Spencer said that although there is a general understanding that this would take the form of a building, a virtual centre of excellence such as the model for a National Framework for Lung Research can also work well.

7. Proposed closure of the M.E./CFS service at the Queens Hospital Romford

The Chair told the Group that this has been raised with Paul Burstow MP at the meeting of representatives for the Group with the Minister on 10th May 2011.

Dr Jane Colby, Mary-Jane Willows and Dr Charles Shepherd said that there are mixed reviews of the services from patients. Sir Peter Spencer added that this is true of other areas of medicine. So long expectations are managed and patients are made aware of any risks, they can make an informed choice about using this service. The clinical audit of this inpatient service shows impressive overall results.

Sir Peter Spencer said that the delegation of responsibility to local Trusts means disadvantages of people with M.E. in comparison with more conditions with much higher prevalence.

The Chair said that in a recent parliamentary question, Andrew Lansley MP had been asked what the provision for Multiple Sclerosis (MS) would be. He had responded that MS services would be commissioned on a regional basis. The Chair suggested the Group might want to work on a similar provision for M.E. Dr Charles Shepherd said that the difficulty is that unlike MS, the biomedical pathology of M.E. has not been established. The Chair commented that this is why biomedical research is so important.

8. Date of next meeting

To be confirmed, after the summer recess.

The Chair called the meeting to a close.

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