The AfME ME Observatory and another list they do not want us to see

AfME National ME Observatory: So, who is on the Steering Group? Part Two

The AfME ME Observatory and another list they do not want us to see…

In March 2006, AfME received a £500,000 grant from the Big Lottery Research Grants Programme. This considerable sum of money has been used by AfME to establish the National ME Observatory.

You can read more about the ME Observatory and the type of research studies this money is being used for here

Following the 16 June meeting of The ME Association Board of Trustees, Dr Charles Shepherd published a summary of key points emerging at that meeting. In his summary, Dr Shepherd writes:

“A meeting of the ME Observatory Steering Group took place on the same day. As this clashed with the Board meeting, the MEA could not, unfortunately, be represented.”

To the best of my knowledge, The ME Association has not made any announcement to this effect, but we can assume from what Dr Shepherd has written in his summary that a representative of the ME Association, possibly Dr Shepherd, himself, has been appointed to the ME Observatory Steering Group.

Issue 61 of AfME’s InterAction magazine carries an update on the National Research Observatory which includes a list of lay members appointed to the Steering Group and a list of those appointed to a Reference Group but there is no mention of Dr Shepherd’s appointment or of any others who may have been appointed over and above lay members.

On 25 September, I wrote to Dr Derek Pheby, Project Co-ordinator, CC to Sara Brooks, AfME.

I have today received a response from Dr Pheby. Other than confirm that Dr Charles Shepherd, Medical Advisor, ME Association, does hold a seat on the Steering Group, Dr Pheby has failed to provide any of the information I had requested.

Since Dr Pheby and AfME are evidently reluctant to once again deliver on this most basic of information, I am forced, today, to apply under FOI (Freedom of Information).

Are members of the Reference Group also being kept in the dark about the make up of the ME Observatory Steering and Management Groups?


To: Dr Derek Pheby
CC: Sara Brooks; Sir Peter Spencer
Date: 11 October 2007

Re: National Observatory Project: Steering Group

Dear Dr Pheby,

Thank you for your reply. I note that you have not provided the information first requested on 25 September 2007.

Today, 11 October 2007, I therefore apply formally under FOI for the following information:

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

Contact details for individuals/organisations are not required.

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


Mrs Suzy Chapman, AfME member

[Full contact details]


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