Group on Scientific Research into ME
8th May 2007 4pm Room W2 HOC
Chair: Dr Ian Gibson MP
Secretariat: Sarah Vero
Countess Mar; Dr Richard Taylor MP; Michael Meacher MP
Dr Des Turner MP
Items for Discussion
Dr Gibson welcomed the members in attendance and said Des Turner may attend later on. Dr Gibson advised the Group members of a meeting he had attended with Invest in ME, Dr Byron Hyde and Prof Malcolm Hooper. Long term the outcome of this meeting is that they aim to establish a research programme into ME in the UK. Dr Gibson felt that there were a few key recommendations in the report which everyone agreed with across the board and should be taken forward.
2) Response of Group members/frequency of meeting
The Group members present discussed the fact that the other members were no longer willing to attend meetings or engage with the work of the Group. The GSRME had always been set up to run for a finite period of time to conduct an Inquiry. The other members obviously felt they have served their time and were not willing to continue. Thus the Group should disband. In any case it is confusing and of little use to have an APPG and GSRME when efforts can be concentrated in one place.
3) Mandate to speak for the Group/correspondence
Sarah Vero had made numerous attempts to get the individual Group members to agree to amendments to the report however only the members in attendance would be willing to consider amendments and as such there is not a mandate of the Group to consider amendments.
Dr Gibson was still responding to correspondence on behalf of the Group and felt it was not right to continue doing so without their support.
4) Possible Amendments
• Teenagers and Children
• Benefits Section
• Treatment Centres
These were the key sections for amendment. However this item had been rendered irrelevant by the discussions of the previous points. The group members present felt these three issues remained unresolved. There was a discussion regarding treatment centres. The Group members felt it is important to stress that the services at many centres are not satisfactory however the model of specialist treatment centres has the potential to deliver much needed care to patients who do not have the proper biomedical support (if any) from non-specialist GPs.
5) Working with the APPG
Dr Gibson and Sarah Vero maintained that it was vital to keep Parliamentary support for the ME cause and encouraged those present to initiate active links with the APPG on ME. It is hoped that the APPG can be utilised as a dynamic campaigning group for the ME community.
6) Any other business
Richard Taylor raised the issue of the Nightingale Guidelines which he felt made a number of claims which were intriguing but needed further explanation or substantiation – such as the use of brain scans to reach a definitive ME diagnosis. Dr Gibson asked Dr Taylor to summarise his concerns in a letter which Dr Gibson would pass to Dr Hyde.
Countess Mar asked Sarah Vero about the work looking into DWP conflicts of interests. SV reported that while there was evidence the issue was how to use it. It would appear the Ombudsman is the best route however they deal with complaints on a case by case basis so it would need to be done on the back of an individual who was refused benefits. SV will raise this with the APPG.
The Department of Health have still not responded to the Report. SV will chase this up again and then publish all responses on the GSRME website.
The Group were extremely pleased that they had taken the task on and although it had been hard work and trying at times they feel that it had been an important and fascinating Inquiry.