Disclosure by AfME of composition of National ME Observatory Steering and Management Groups

Disclosure by AfME of the composition of the Steering and Management Groups for the National ME Observatory

AfME finally coughs up with a list of names!

I’d like to set the following on record:

On 1 October 2007, I first contacted Dr Derek Pheby, AfME National Observatory Project Co-ordinator, (CCd to AfME’s Sara Brooks):

I wrote:

“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 I 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.

I would like to make a formal request for the following information:

1] Have any other representatives of national ME patient organisations (other than the MEA 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 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.”


Apart from confirming that Dr Shepherd (MEA) did indeed hold a seat on the Steering Group, Dr Pheby provided no responses to these questions, stating that “Those lay members who were appointed as a result of the exercise all consented to have that fact reported in Interaction. We were obliged to seek that consent as a result of our obligations under the Data Protection Act, which restricts what further information we can disclose about other participants in the project whose consent to disclosure has not at this stage been sought.”

Dr Pheby evidently had no inclination to obtain consent in order to release a list of names to me nor did he appear to consider that the information I had requested should already have been placed in the public domain.

On 11 October 2007, I wrote again to Dr Pheby, this time copying in Sir Peter Spencer (CEO AfME), and requested this information under the FOI Act. Receiving no response from either Dr Pheby or Sir Peter, I wrote again on 2 November.

This did evoke the following response from Dr Pheby which he had CCd to Sir Peter Spencer:

“Thank you for your further message. I apologise for my oversight in not having replied to you until now. I note that you requested some information regarding the National ME Observatory Steering Group, and invoked the Freedom of Information Act in support of your request. It should be noted that charities do not actually fall within the scope of the Freedom of Information Act.”

That is all he has to say.

On 6 November, I decided to approach Sir Peter Spencer, directly, (CCd to Dr Derek Pheby and to AfME’s Sara Brooks and George Armstrong):

I wrote:

“The Observatory is a separate organisation which is an amalgamation of academic institutions, the Lotteries Board and Action for ME. The Freedom of Information Act applies to government bodies such as academic institutions and the Lotteries Board. Additionally, the Observatory is spending half a million pounds of public money and is accountable to the public for the manner in which that money is spent and it is expected to be open to public scrutiny, through the FOI Act.

I am deeply concerned that as Project Co-ordinator, Dr Pheby evidently does not feel the Observatory should be open to scrutiny and that the Observatory (and by extension, AfME) seek to operate with a lack of transparency and without due regard for the requirements and ethos of the FOI Act. It is remarkable that AfME would appear to be supporting Dr Pheby in his evident desire to deny AfME members knowledge of who comprise the various Steering and Management Groups which share responsibility for supervision and management of this major project.

I shall be contacting The Big Lottery Fund Grants Officer with responsibility for the Observatory Project with my concerns about the Observatory and AfME’s handling of this matter, forthwith, and submitting a request for this information to be provided under FOI, by the Lotteries Board.

I wish to extend to you one last opportunity to provide the information I have requested and which I append […] below.”


I received neither the courtesy of an acknowledgement nor a reply from Sir Peter Spencer and on 9 November 2007, I put in an FOI request for this information to The Big Lottery Fund.

I was advised by The Big Lottery Fund that they did not hold the information I had applied for and that they were under no obligation to request information from an organisation to enable a member of the public to access it, but that this information might, in any case, be subject to Section 12, and to Section 40(2) of the Data Protection Act relating to personal information.

Around this time, I also submitted an FOI for the same information to the University of York (CCd as a matter of courtesy to Professor Peter Campion) and also to the University of East Anglia – both universities being partners with AfME in the Observatory Project. Both institutions replied that they did not hold this information on file.

Professor Campion also responded to my communication, commenting that as a member of the Steering Group, himself, he expected that its activities would be as transparent and accountable as is proper for any such body and that as a researcher, he expected total confidentiality to be available to all research participants, and also that researchers themselves were not exposed to any personal risk as has happened to medical researchers, as he was sure I was aware.

Quite what “personal risk” Professor Campion perceives researchers engaged in Observatory projects might be exposed to isn’t clear nor does he elaborate on what basis he has for his apparent concerns.

I wrote again to The Big Lottery Fund expressing my concerns that the Observatory Project Co-ordinator and AfME were not operating transparently.

On 4 December, The Big Lottery Fund wrote to me with a proposition:

Since they were unable to fulfil my request because a) they did not hold all of the information I had requested; b) they estimated that the cost of compiling the information in order to comply with the request would exceed the appropriate limit and c) if the information were held by them, it could also be subject to section 40(2) relating to personal information and may not be released for that reason, that rather than respond to my individual questions they were offering to send me instead a considerable body of material which they were in the process of releasing to another individual following a separate request under FOI and that this bundle would include the initial grant application, the business plan and their correspondence with AfME.

Well, I wasn’t going to say No, was I?

So for the past 10 months, I have been sitting quite legitimately on some 450 odd sides of A4 photocopies which represent much of the file that The Big Lottery Fund were holding on AfME and the Observatory Project at November 2007 – it’s a couple of inches thick.

A number of pages were identified as having been omitted which had contained CVs and personal contact details. I was also advised that The Big Lottery Fund’s internal assessment processes, and data such as bank account details had also been left out.  Some names and contact details had evidently been blacked out before photocopying, but otherwise I was given to understand that little else was being withheld from this very large bundle of documents and correspondence.

The irony of this is, that as a result of AfME and the Observatory Project Group Co-ordinator’s decision not to place the information I had requested in the public domain (set out at the top of this report) the result has been that I have actually ended up with a vast bundle of stuff – the research proposal application documents, the research project costings, copies of the three independent expert review reports, the business plan, the research agreement, variation reports, copies of letters and emails between AfME/Observatory Project personnel and The Big Lottery Fund, internal and external correspondence relating to applications submitted by other individuals under FOI for information about the Observatory Project; staff costings, job specs, costings for equipment, travel, workshops, conference attendance, translations, transcriptions, video equipment, printing, consumables, development of a website, copies of invoices for PCs, printers, software, and various other documents provided by AfME and the academic institutions working in partnership with the Observatory Project like accounts, governing documents and charters…and what a fascinating read it is!

The Big Lottery Fund also held a copy of the ONE CLICK AfME Dossier on file.

At least two other individuals are known to be holding this material under FOI.

The names of some of those from the academic institutions involved in the Observatory Project – Pheby, Campion, Lacerda, Leite, Chia, Nacul, Howe  had already been published by AfME in its magazine or were evident from university and AfME press releases, from university websites or from UEA adverts for research volunteers. The bundle revealed that Professor Leslie Findley (National ME Centre) was not only a member of the Observatory Steering Group but that he had also been one of the three independent expert reviewers of the research proposal – so there was another name to add to the list which AfME had yet to make public.

Dr Charles Shepherd (MEA) had already let slip that he had a seat on the Steering Group. But it was not evident whether reps for AYME or The Young ME Sufferers Trust (or any other patient organisation) also had seats, since Dr Pheby and Sir Peter Spencer had been unwilling to clarify and since the bundle provided by The Big Lottery Fund did not include copies of minutes for Project Steering Group and Observatory member meetings nor a directory of Steering and Observatory Group members and others involved in the Project.

Douglas Badenoch (Minervation/PRIME) had been quite happy to confirm to me, last December, that Sally Crowe and an associate had been allocated seats on the Steering Group and that he also had an involvement, himself – PRIME’s involvement with the Observatory had been alluded to in a PRIME newsletter, so that was an easy line of enquiry. Some other names can be derived from the bundle of Observatory related documentation that’s sitting in two A4 files beside me.

Amongst the correspondence, I noticed that the Lottery Fund Grants Officer had written to AfME on 6 November 2007 requesting certain information to be provided to them by 23 November – this to include an interim monitoring report on the project tasks for year one and a request that the following documents were also submitted:

. Minutes from meetings held to date between Action for M.E., the project steering group and observatory members.
. A list of members of the project steering group.
. A list of members of the Observatory.

On 25 June 2008, I wrote again to The Big Lottery Fund that I had been advised by them on 4 and 12 December that they did not hold all of the information I had requested in my original FOI application but that it was evident from correspondence included in the bundle they had sent to me that the BLF Grants Officer had written to Dr Trish Taylor on 6 November 2007, CCd to Sir Peter Spencer, requesting certain documents.

Under FOI, I requested confirmation of whether AfME had fulfilled the request to provide the Big Lottery Fund with a) A list of members of the project steering group, b) A list of members of the Observatory, and the date on which this request was fulfilled.

On 1 July 2008, Robert Holland, Head of Corporate Governance, Big Lottery Fund confirmed that Action for ME had complied with this request on 3 December 2007.

It appears then, that when The Big Lottery Fund wrote to me on 4 and 12 December they were now holding on file some of the information that I had requested, the previous month.

I have had no further correspondence with The Big Lottery Fund or with AfME or with Dr Pheby, the Project Co-ordinator, over these matters.

I’d like to remind readers that by the end of 2007, the 16 members of the Observatory’s Reference Group were also being denied knowledge of the names of the members of the Steering Group and members of the Observatory to which they had anticipated they would be relating; lines of management accountability had not been set out for them, either. They were also being denied copies of minutes of Steering Group meetings which had already taken place – effectively, the Project’s Reference Group were groping around in the dark and had become largely tokenistic as regards input and influence.

Whilst Action for ME evidently has no qualms about publishing the names of the six lay members recruited to the Project’s Steering Group (together with their biographical details) and also the names of the 16 or 17 individuals recruited to the Reference Group in its membership magazine, InterAction, it has continued to deny its membership, the wider ME patient community and the public the names of those individuals who comprise the various Steering and Management Groups which share responsibility for the oversight of this major project. No line management organisational chart has been published and there is still no website or dedicated web pages for the Observatory Project up online – which had been a project task for year one.

Therefore, it is not possible for stakeholders like myself or for the general public to establish with whom specific questions, queries or concerns about this project should be raised, nor is it known by whom and on what basis questions will addressed, since no lines of management accountability have been set out for public use and scrutiny and since the functions of those comprising the Steering and Management Groups have not been defined, since the organisations they represent have not been declared and since the process through which they were appointed or co-opted onto these groups remains unknown.

I would like to stress that no requests for personal information such as Observatory members’ addresses, telephone numbers or email addresses have been made but it is expected that Action for ME should be prepared to be transparent about who comprises the various Steering and Management Groups tasked with responsibility for the supervision and management of a project in receipt of half a million pounds of public money, in the same way that other organisations are expected to be transparent.

But something rather peculiar has now transpired.

In September 2008, Ciaran Farrell wrote an email to Heather Walker of AfME in which he raised a number of concerns about the operation of the Observatory – including the fact that AfME and the Observatory had still to identify and publish the names of those who comprise the Steering and Management Groups and that this information has also been denied to a number of individuals who have requested it.

On 2 October, as part of her response, Ms Walker says that she will need to forward Mr Farrell’s email to those who are more directly involved [in the Observatory] and she requests his permission to do so.  But she also writes:

“However, I should add that am not aware of any secrecy with regard to membership of the steering group and that web pages about the Observatory are planned and should go up this autumn.”

Incidentally, Ms Walker also adds:

“For future reference, you may wish to know that Trish Taylor has been obliged to stand down as trustee due to ill health and Roy Cheng left the charity about a year ago.”

On 9 October, as part of a response to a further email from Ciaran Farrell, Ms Walker states:

“Composition of the management group and steering group of the Observatory is no secret – see attached…”

and she attaches the following list in a Word document. (I have indicated which individuals are lay members in square brackets, otherwise the list is as provided.)

Steering group

Dr Malu Drachler, UEA
Dr Fiona Poland, UEA
Dr Jose Carlos de Carvalho Leite, UEA
Eliana Lacerda, LSHTM
Dr Luis Nacul, LSHTM
Dr Derek Pheby, Hull
Prof Peter Campion, Foundation Prof of Primary care
Sally Crowe, PRIME/Crowe Associates
Dr Charles Shepherd, MEA
Sara Brooks, AfME
Alison Collins [Lay member]
Cecilia Finnerty [Lay member]
Joanna Doherty [Lay member]
Keith Kahn-Harris [Lay member]
Dr Kirstie Haywood, RCN Institute
Prof Leslie Findley, National ME Centre
Philip Johnson [Lay member]

Management Group

Ben Brown
Peter McAughey
Peter Spencer
George Armstrong
Nick Boatwright
Sara Brooks
Derek Pheby

Reference Group

Simoni Belem
Nicolette Bolgar
Angela Bradley
Ben Brown
Emily Burns
Nine Crummy
Sally Dench
Sarah Feehan
Frances Gibson
Sarah Harper
Catherine Hislop
Barbara Hutchison
Caroline Marr
Caroline Middleton
Sasya Morar
Margaret Norwood
Joanna Shackleton
Susan Sykes
Erzsebet Toth

Others involved in the project

Dr Simon Horton
Prof Amanda Howe
Dr Maggie McArthur
Dr Anne Killet
Dr Lee Hooper
Ian Harvey
Swee Hong Chia
Rachel Mold
Lucy O’Driscoll
Douglas Badenoch


So there we have it. At last!  Almost a year since I first requested this information from Dr Derek Pheby and from Sir Peter Spencer, CEO of AfME, though it was June 2007 when Ciaran Farrell, then a member of the Observatory Reference Group, first requested this information.

What we still don’t have defined are the individuals’ functions within the Project Group or within the Project as a whole and/or a line management organisational chart, and not all the organisations with whom the individuals above are associated have been given.  Nor has it been clarified through what process seats on the Steering Group were allocated. Nor was it confirmed, last year, whether any other patient organisations had been allocated seats on the Steering Group other than the ME Association – but one presumes not, according to the list furnished by Heather Walker.

Action for ME’s Heather Walker evidently has the authority to release these names; furthermore, she has said that “Composition of the management group and steering group of the Observatory is no secret…”

So what were Dr Derek Pheby, Sarah Brooks and AfME’s CEO, Sir Peter Spencer, playing at in denying individuals like myself and the members of the Observatory Reference Group this information in late 2007?

Why was I forced to put in an FOI to The Big Lottery Fund?

Why has it taken over a year for some of this information to be provided by AfME?

Why had the information I had requested last year not already been placed in the public domain where it could be accessed by any interested party?

Why is the Observatory website not already online?

Why does Action for ME persist in making its members jump through hoops for such basic information?

I shall be commenting further on AfME’s lack of transparency to its membership and the wider public over this and previous issues, like the AfME/MRC joint Research Summit, in the next few days.

Suzy Chapman

29 October 2008


Related links:

The ONE CLICK AfME Dossier by The ONE CLICK Group

The AfME Research Summit and the list they did not want us to see by ME agenda


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