Reference to AfME/MRC Summit on today’s You and Yours

Reference to  AfME/MRC Summit and AfME National ME Observatory on today’s You and Yours ME strand

On today’s You and Yours ME strand, Dr Esther Crawley referred to the AfME/MRC Research Summit; the AfME ME National Observatory was also mentioned.

The list of those who attended the AfME Summit, last year, is not the only information which ME charity AfME has been unwilling to disclose and for which an application under FOI has had to be resorted.

To date, AfME has published only a list of lay members of the AfME ME National Observatory Steering Group and the names of those who comprise this Project’s Reference Group.  [£500,000 in funding from the Big Lotteries Board for epidemiological research studies.]

On 25 September, I applied to Dr Derek Pheby, Project Co-ordinator, for a complete list of the names of all those who comprise the Steering Group and the Management Group of the National ME Observatory or are otherwise involved in this Project, together with the organisation they represent (where appropriate) and their function within the Project Group or within the Project as a whole.  I also asked through what process these seats had been allocated.

Neither AfME nor the Project Co-ordinator for the Observatory Project, Dr D Pheby, has been prepared to disclose a complete list of who holds seats on these Steering and Management Groups.  [Dr Pheby has confirmed that Dr Charles Shepherd holds a seat.]  It has been necessary for me to apply to the Big Lottery Fund, under FOI, for this basic information.

Even members of the Reference Group set up for this Observatory Project are being denied this basic information.

AfME has referred to a “Research Advisory Panel” – are members of AfME, the wider ME community and the general public going to meet a similar lack of transparency from AfME when trying to establish who will comprise this “Research Advisory Panel”?

In what ways and on what basis will AfME have an involvement in the “Multidisciplinary Body” that the MRC is said to be in the process of setting up, which was one of the recommendations which came out of the AfME/MRC Summit?

The information which I applied to Dr Pheby for on 25 September 2007 is set out below.

On 7 October 2007, I applied formally under FOI to the Big Lottery Fund for the same information.  I am advised that I should receive a response no later than 6 December.

National ME Observatory

1] Have any other representatives of national ME patient organisations (other than Dr Charles Shepherd, ME Association, and AfME’s own staff and Trustees) been allocated seats on the Steering Group and through what process were these seats allocated?

2] Other than any ME patient organisations, have any other organisations, or individuals (other than those specifically named lay individuals that comprise the Steering and Reference Groups and are named as such in InterAction) been allocated seats on the Steering, Management or any other group or groups that comprise the Observatory Project and through what process were these seats allocated?

3] Would you please also provide a complete list of members of:

The Steering Group (both lay and professional)
The Management Group
The Reference group
Any other individuals or organisations involved in this Project

The list to include:

Name of individual
Organisation represented (where appropriate)
Function within Project Group or within Project as a whole

If a Line Management organisational chart has been produced then a copy of this would also be welcomed.

Note: Contact details for individuals/organisations are not required.