Statement regarding the promotion of events associated with Ms Diane Newman

Statement regarding the promotion of events associated with Ms Diane Newman

Ms Diane Newman runs the Peterborough M.E. & CFS Self Help Group and is a former trustee of the ME Association.

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.

For both events, I had undertaken to publish notices and promotional material on my sites at  and .

In the light of recent issues, I am no longer prepared to carry notices, reports and promotional material for any events organised by Ms Newman. This means that I am not prepared to publish Ms Newman’s 27th June report of the events on 12th May and 15th May or the minutes of the “Open Forum” meeting held on the 15th, if and when minutes are produced by Ms Newman for circulation.

Nor will I be prepared to carry notices or other material for the May 2009 “Peoples Day Events” which Ms Newman is also undertaking to organise. Nor will I be prepared to carry notices or other material associated with any other event which Ms Newman might be planning to organise in the interim.

This decision has been made for the following reasons:

Mr Trevor Wainwright, a Founder Member and former Administrator of MERSC, is listed by Ms Newman as being “Event Patron” to these “Peoples Day Events” organised in May 2007 and May 2008.

In July 2003, Mr Wainwright had published a series of postings on the Yahoo list “MEActionUK” in which he set out his vision for a new campaigning organisation in the wake of the first 12th May event, which had taken place a couple of months earlier.

At the time, Mr Wainwright had been challenged by another member of the Yahoo group to expand on some of the comments he had expressed via this series of postings and one of the questions he was asked was whether this proposed society would cater for various fatigue conditions as well as Myalgic Encephalomyelitis and if not, how did he intend to separate the different patient groups?

Mr Wainwright’s response, in 2003, had been:

“Myalgic Encephalomyelitis should be the main illness, but I see no reason why other conditions which include severe fatigue should not be included. This I have often said during my pub collections when there has been confusion with varying fatigueable illnesses. Find the cure for one and you’re on the way to finding the cure for the rest.”

Earlier this month, during discussions centring around the concepts of “leaders” and “leadership” and whether the ME community would benefit from “leaders” and “leadership” or whether what was required was the formation of a new democratically run campaigning organisation, I asked Mr Wainwright if he would clarify his current position on the views he had held in 2003, as set out above.

Mr Wainwright has confirmed that he still holds those views and that he stands by them.

It is this issue that I have set before Ms Newman, as Organiser of this year’s 12th and 15th May events.

Given that Mr Wainwright was listed as “Event Patron” to this year’s 12th May events (either as a self elected patron or having had this role bestowed upon him by Ms Newman) and given that he has confirmed that he holds views that I consider anathema to me, as a carer and member of the ME community, I have asked Ms Newman, as Event Organiser, for her position on the following:

Do you consider that ME organisations should include and cater for “other conditions which include severe fatigue” as well as Myalgic Encephalomyelitis?

Not only is Ms Newman seemingly unwilling to provide a clarification of her own position on this issue, in her capacity as Organiser of the “Peoples Day Events”, but the setting of this issue before her has provoked a hostile and vituperative ad hominem attack, in response to a polite request.

Mr Wainwright is entitled to hold the views and opinions that he holds but I do not support the view that ME organisations should include and cater for “other conditions which include severe fatigue” as well as Myalgic Encephalomyelitis.

It is a fundamentally antagonistic principle that has no place on platforms for political issues affecting the lives of sufferers of Myalgic encephalomyelitis [WHO ICD-10:G93.3] and those who care for them.

I cannot undertake to publicise any past or future events where an “Event Patron” has been appointed who holds such views.

Nor am I prepared to undertake to publicise any past or future events or ventures where the Event Organiser is not prepared to be open and transparent about the views and opinions she holds on such matters.

I shall not, therefore, be publishing copies of Ms Newman’s report of the 12th May event and the 15th May “Open Forum”, nor a copy of the minutes for the “Open Forum” meeting, if and when Ms Newman produces minutes.

Nor shall I be publishing or circulating any material in connection with any future venture(s) with which Ms Newman may be associated and I disassociate myself, entirely, from Ms Newman and from any events, organisations and ventures with which she is currently associated or with which she may be involved or seek to involve herself in the future.

Suzy Chapman   

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