Position statement on the issue of the minutes of 15 May public Open Forum meeting from Ciaran Farrell

Ed: Ms Diane Newman runs the Peterborough M.E. & CFS Self Help Group and is a former trustee of the ME Association. Ms Newman is currently styling the organisation she runs as the M.E. Society (former Peterborough M.E. & CFS Self help). There is no website currently accessible in either of these names.

In May 2007, Ms Newman undertook to organise two ME Awareness Week “Peoples Day Events”. She also took on the role of Event Organiser for two events to mark ME Awareness Week 2008 – the first on 12th May and a public “M.E./CFS Open Forum” meeting held in a House of Commons committee room on 15th May.

This meeting was chaired by Ms Newman and was held independently of any organisation with which Ms Newman may be involved.  It was not held under the auspices of the M.E. Society (former Peterborough M.E. & CFS Self help).

The Agenda for the “M.E./CFS Open Forum” meeting held on 15 May can be read here:


On 27 June 2008, Ms Newman published brief “Notes” in relation to these two events on the Co-Cure mailing list which can be read here:


27 June 08 Notes of the 12th May M.E. Peoples Day Event Report and 15th May M.E./CFS Open Forum

Ms Newman’s “Notes” are largely illegible due to known formatting problems with her email account. But at the foot of this notice Ms Newman states:

“c. A number of other significant issues were raised under ‘AOB’ and will be covered in the minutes of the meeting which will be available in the near future.”

But Ms Newman has failed to publish the minutes of this public “Open Forum” meeting.

So what was discussed and the decisions that were taken at this public meeting have not been placed in the public domain. Nor is it known what the outcome of any decisions taken at that meeting has been since no further updates have been issued by Ms Newman.

In July, Mr Trevor Wainwright, who had been unable to attend the meeting, resigned as Patron to these events.

Below I am publishing a position statement from Mr Ciaran Farrell who was one of six individuals who had attended this public meeting. All enquiries about the chairing of this meeting should be directed to Ms Newman.

For enquiries about the content of the statement below, please contact Mr Farrell.


May be reposted

Position statement on the issue of the minutes of 15 May public open Forum meeting

Ciaran Farrell

21 November 2008

I was asked by the organiser of the public open Forum meeting of 15 May, Ms. Diane Newman to make a complete audio recording of the meeting which will be used for two purposes, firstly to provide a record of discussions for those who attended the meeting, and secondly for publication as the meeting was a public meeting and there was no objection whatsoever to the publishing of the entire audio record from the outset.

I explained this at the start of the meeting to those present before I started making the recording, and I advised those present to be aware of the fact that they were going to be recorded. I said that if those present did not want me to make the recording, and I would not do so. All those who were present agreed to be recorded and agreed the basic terms under which they would be recorded.

Since the group made this decision I said that I would record the meeting with their consent, and advised them to bear in mind that whatever they said would obviously be recorded, and presumably subsequently published for all to hear. During the course of the meeting I did advise that certain speakers ought to bear in mind the fact that they were being recorded. My own approach to this matter was that over the course of many years I have attended many public meetings and that I had grown used to the fact that anything I said could be taken down either electronically or in notebooks by anyone present who may wish to question me on what I said at the meeting subsequently.

I did say that if there were problems I could edit out certain portions or responses or discussion from the finished audio recordings for publication, but that those who made the contributions that they wished to be edited out would have to inform me of those edits they wanted me to make, and there would also be technical difficulties in making the required edits, so although I was perfectly willing to edit the recordings as required, even though it would be technically difficult to do, I would do it. I also explained after the meeting that I would provide all those present with a full copy of the audio recording for them to listen through and decide whether or not any edits should be made, and to advise me accordingly. I did emphasise that it would be much better for technical reasons only not to have to do this.

My own personal position on the matter is that I believe that in the interests of transparency and honesty and accountability the audio recording should be made available to any person or persons or organisations that would like to receive a copy of it. It would be preferable in my view if the recording could be placed on some sort of Internet website facility whereby anybody who wished to download it could do so. Those who would be unable to use such a facility for various technical reasons could be provided with these CDs concerned.

The meeting began at approximately 2:10 and finished at approximately 6:20 PM, plus there are approximately 4 hours and 10 minutes of audio recording which cannot easily for technical reasons be placed on a website facility, and I do not have such facilities myself.  The recordings that I have made consist of four CDs in their final finished on edited form.

Although there are only six people at the meeting there has been considerable debate after the meeting concerning the issue of minutes, the decisions taken at the meeting, the status of the meeting, in relation to what actually took place at the meeting, and therefore the role of the audio recording in settling these disputes.

In order to deal with the issues more clearly, and to reduce the impact of characters and personalities on the matter of the issues, I feel the best way of describing the current situation is in relation to the various camps of opinion that exist, or to the best of my knowledge have existed and continue to exist. One individual may occupy one or more of the following camps :-

1] Those who are in conflict with others who were present at the meeting about what was decided at the meeting and whether or not any decisions taken at the meeting were valid, or binding on the organiser in any way shape or form, on any kind of group that the meeting may be seen to constitute, or the organiser of the group or meeting. It is the stated view of the organiser that the meeting made no decisions because it was not capable of making any decisions in any way shape or form and therefore no decisions could have been arrived at.

This clearly is not a logical stance since the audio recording quite clearly identifies a number of decisions taken because the meeting quite clearly concluded certain sections of the agenda with some kind of collective action that the meeting would take either via an individual who volunteered to carry out some kind of action, on behalf of the meeting, or group, all those collective actions which it was understood by those present at the meeting that the organiser would take, possibly in consultation with others as a result of the decisions made at the meeting. To deny this was the case is simply to deny the content of the audio recordings, and the basis upon which the meeting was set up, and the nature of the discursive agenda which prompted future action by the group or meeting to be discussed on 15 May.

2] Those who principally disagree with the stance that the organiser has taken over this matter on various different issues, but as these various issues range over a number of matters they cannot be easily or quickly resolved without reference to the dispute concerned, or the above considerations. The organiser claims that the audio recordings support her point of view, when clearly this is not the case as can be witnessed from the content of the recordings themselves, and this has led to conflict between the organiser and many of those present at the meeting.

3] There are those who feel that they said some rather ill considered things at the meeting, as it might get them in trouble, and so they want that to have certain portions of the recording edited, but on listening to the recording cannot and will not identify any portions to be edited out, but basically feel that the recording should not be made public.

4] There are those who said one thing at the meeting, and subsequently changed their mind about what they said at the meeting, and have distanced themselves from what they said at the meeting, thus again undermining the decisions and decision making processes at the meeting. It is not surprising that this group overlap with the one identified in point 3, above.

5] There are those who are simply unaware of the true nature of what was said at the meeting due to the fact that I was unable to supply them with a copy of the audio recordings as I have no address to which to send them. Given the size of any audio file which would contain the recordings it is not feasible to send the recordings via e-mail.

6] There are those who consider the matter closed as it happened some time ago and they have now moved on, so they really do not see that it is an issue what happens at the meeting and whether or not the decisions taken were or are not binding on the organiser in some way to follow-up or follow through, possibly with the help of others.

7] There are those who have not engaged with me in my attempts to try and produce an audio recording and to ensure that it is an acceptable recording from their point of view that could be published as was the original intention and agreement of those present at the meeting.

During the course of the many disputes that have occurred between the organiser and those present at the meeting concerning the status, decisions taken, and the ability of the meeting to take decision, or form any form of collective view and express that view collectively, the meeting’s organiser Ms. Newman, decided that she was going to produce certain summaries of the 15 May event, and the event on 12 May as well. She did this without consulting those present at 15 May meeting either properly or adequately and in certain instances certain individuals were deliberately left out of the group who received the draft copies of the summaries. The summaries concerned took a certain view of the events as a whole and of 15 May meeting that were not compatible with the actual events of 15 May meeting, and with the organiser’s previous statements about what had occurred at the two events concerned, thus producing confusion and a certain amount of conflict between the organiser and those present at the events.

On being challenged about the contradictions between the decisions made at 15 May meeting and the summary produced by the organiser, Ms Newman took this decision to act in accordance with point 1 above, although under pressure she conceded to make minor amendments to the summaries, the summaries themselves, particularly that of 15 May meeting, she refused to change in certain key respects, therefore going back on the decisions of 15 May meeting, thus causing further confusion and conflict as to what had occurred at the meeting, and a status that the meeting had to take any form of collective view about any matter whatsoever.

Subsequently, Ms Newman did not consider it to be a priority to produce minutes of 15 May meeting, as she contended that the summaries were all that was required, even though she had given a commitment to producing the minutes herself and that the full state of affairs would be revealed in the minutes, when she had chosen to deliberately misrepresent matters in the summaries.

Ms Newman contended that in order to produce the minutes it would be necessary for her to go back through the entirety of the audio recordings and to start from scratch, when this quite clearly was not necessary as she had made copious notes during the course of 15 May meeting which would form the basis of the minutes and a write-up for public consumption of the events of the meeting. Logically, all that was required was for Ms Newman to check certain key points in her notes with the audio recordings, but she refused to do this. She denied making the notes in question, on the basis that they were for her personal use only and did not constitute any form of written record of the meeting. This clearly was not the case as many times during the meeting she wished to make summaries of a given point, or issue so that she could get it down on paper.

When the minutes had still not been produced, and Ms Newman came under pressure to do so, she decided that she was too busy, or possibly too ill to undertake such a mammoth task from scratch herself. She then decided to parcel out the task of producing the minutes to various people present at the meeting. It would have been a sensible thing to do to use the timeframe on the CDs as a guide rather than an arbitrary set of Time divisions which related to time from the start of the meeting, as it is not possible to know when a certain discussion took place by the clock, as a clock is a visual device and does not show on an audio recording. In addition, there were those who did not actually have a copy of the audio recording who were delegated to produce minutes from it. Each person was allocated a certain portion of the meeting to cover, and then they would produce the relevant minutes and send them into Ms Newman who would correct them and put them in the right format and house style to produce a finished document.

By the time is Newman had decided to parcel out the job of producing the minutes to those who were present at the meeting, the meeting group had become so dysfunctional and I very much doubt if anyone took her up on this matter, meaning that as far as I am aware no minutes were produced by those whom Ms Newman had delegated her job to, and also because all those concerned were all too aware of the fact that Ms Newman was abdicating her personal responsibility for producing the minutes in the first place.

Bearing all of the above in mind, any attempt on my part to produce some written record or minutes of 15 May meeting would naturally end up in opening up all the conflicts I have set out above as any written record produced from the full audio record and the agenda for the meeting will be subject to judgements made by me in constructing a written document which summarises the content of the audio recording. Therefore I do not consider that any form of minutes that I would produce would be seen as a fair and accurate written record of what took place at the meeting by certain parties who were present at the meeting, and most particularly Ms Newman herself.

The only other option that I have which would remove the matter of my own personal judgement from my construction of a written document from the audio recordings, is to make available the entire audio recording of the meeting, possibly in association with the agenda for those who do not have it, publicly to the ME community in order that anyone who listens to the recordings they make their own judgements about what was said, and not, and about what decisions were made and the understandings of those who were present around the table on the day.

I know that by taking this course of action I would be going against the express wishes of certain individuals who have changed their mind about what they said at the meeting and have sought to distance themselves from it, but in order to be able to make the audio recordings available to the ME community I must judge the greater good of the matter one way or another.

It is therefore my intention to make the audio recordings available to those who request a copy of them from me unless I hear to the contrary from those concerned, who know who they are, within the next four weeks.

Ciaran Farrell

Attendee at the 15th of May meeting



2 thoughts on “Position statement on the issue of the minutes of 15 May public Open Forum meeting from Ciaran Farrell

  1. Jacqui, Please read the full statement by Ciaran Farrell.

    The Minutes of this Public Open Forum Meeting have not been published. It took place six months ago on 15 May 2008.

    I have received no notice of any kind from Ms Newman (or any other party) in response to this posting of Mr Farrell’s or in connection with any other issue relating to this Public Open Forum Meeting (which I did not attend, myself).

    This Public Open Forum Meeting on 15 May 2008 was held independently of any organisation and it was chaired by Ms Newman, in a personal capacity – the public meeting was not held under the auspices of any organisation with which Ms Newman may be associated or with any other organisation.

    Please direct any enquiries about this meeting to the Meeting Organiser, Diane Newman, or if in connection with the position statement by Ciaran Farrell, directly to Mr Farrell.

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