Archive for the 12 May ME events Category

12th May ME “Peoples Day” events: Patron resigns

Posted in 12 May ME events on August 22, 2008 by meagenda

12th May ME “Peoples Day” events: Patron resigns

Trevor Wainwright announced in July that he has resigned as Event Patron to the 12th May “Peoples Day” events held in London and organised by Diane Newman. No announcement has been issued by Ms Newman following Mr Wainwright’s resignation.

For this year’s events, letters and other material were handed in to Downing Street by Ms Newman on 12 May. On 15th May, an “M.E./CFS Open Forum” meeting was held in a House of Commons committee room, chaired by Ms Newman.

The minutes for this public meeting have yet to be published.

Please direct all enquiries to Diane Newman

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Statement regarding the promotion of events associated with Ms Diane Newman

Posted in 12 May ME events on June 29, 2008 by meagenda

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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Open Forum Meeting: 15 May, House of Commons

Posted in 12 May ME events, ME Association on May 7, 2008 by meagenda

The organiser, Ms Newman, advises that a final reminder for this year’s 12th May event and Open Forum on 15th May is to follow.  Agenda for next Thursday’s Open Forum, below.  All enquiries to Di Newman, please, not to meagenda or Read ME UK Events.


Open Forum Meeting on M.E./CFS
House of Commons, Westminister SW1A 0AA
Committee Room Six
Thursday 15th May 2008
1:45 PM – 4:45 PM



2. OPENING REMARKS: from the Chair

(i) Mental Health/Mental Capacity Act
(ii) Recent Guidelines on M.E./CFS (NICE, NHS-Plus, DWP)
(iii) UK M.E. Clinics & Services, Research & Funding
(iv) RSM Conference
(v) National M.E./CFS Charity Representation

4. THERE WILL BE A QUESTION & ANSWER SESSION: after every one of the topics above are introduced to the meeting by a Speaker. Then the Floor will be open to general discussion



(i) Summary of the Day
(ii) Next Meeting
(iii) Circulation of any Notes and CD/DVD
(iv) Subjects to Focus for Next Meeting and Diary Dates
(v) Panel Members to Approve
(vi) Contact Mailing List



For further information contact:

Di Newman on  
Or 07742 615 952

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M.E. Peoples Day Events 12th and 15th May 2008

Posted in 12 May ME events on April 14, 2008 by meagenda

Looking ahead to other UK ME events I have been sent the following by Di Newman, Organiser of the 2008 12th and 15th May Events in London.

All enquiries about these two events should be directed to the Organiser and not to meagenda who has no connection with their organisation.

From Di Newman

Organiser of the 2008 12 May Event, London.

M.E. Peoples Day Events 12th and 15th May 2008


Dear M.E. Group/Organisation/Charity and Individual,

Please note the following national M.E. People’s Day 12th May Event taking place in London to mark International M.E./CFS Day, 12th May 2008.

With an additional Thursday 15th May event to celebrate and mark the Houses of Parliament M.E. event which takes place annually.

The two events are taking place on a national basis and anyone affected by M.E. including carers, friends and families or anyone with an interest and/or concern with M.E. are welcome to attend.

Please treat this as an invitation to your committee and also to your members and contacts who are all warmly welcome to attend either or both of the events above.

We encourage you all to participate and to especially advertise both the above M.E. Events in your email mailouts, newsletters and websites:


11:00 AM – 11.30 AM Informal Gathering opposite Downing Street, Whitehall, London SW1

12.00 NOON Presentations to 10 Downing Street by a small presentations group and photo-call

12.30 PM Presentations to Department of Health, Richmond House, Whitehall, London SW1

1:00 PM – 2:30 PM M.E. Picnic & Poetry, St James Park (10 minutes walk from Whitehall) London SW1


11:30 – 1:15 PM M.E. Picnic & Poetry, the Victoria Tower Gardens (just further along from Houses of Parliament Black Rod Entrance), overlooking the Thames

1:15 PM – 1:30 PM Join Lobby Queue at St. Stephen’s Gate, outside Houses of Parliament

1:45 PM Prepare to enter Committee Room 6

2:00 PM – 4:00 PM (approx) Open Forum Meeting to discuss the current affairs in the M.E. World.

The OPEN FORUM is an excellent opportunity for members of the M.E. community, its charities, groups, organisations and individuals to discuss the current state of affairs in the M.E. World and where we are in relation to: NICE, Occupational Health Guidelines, DWP, the Mental Health Act and Mental Capacity Bill and the implications with M.E., APPG On M.E., the M.E. Observatory, recent Government initiatives, the quality of representation of M.E. sufferers and carers by the national M.E. Charities, NHS-Plus, Charity Commission, Carer Issues, M.E. Clinics and their Services, M.E. Research and a number of other related M.E. topics.

There will be an agenda for the day and people may like to consider what topics they would like to contribute to and prepare any notes and bring along any relevant documents as appropriate. It would be helpful but not necessary to let us know of your chosen subject prior to the event so that we can timetable the agenda.

We can be contacted at

PLEASE NOTE: Anyone wishing to attend the Open Forum – whether to just sit back and listen, take part in the debate whenever they choose, or those who have made the choice to prepare beforehand are most welcome!

We particularly ask that anyone wishing to attend and listen to the M.E. Open Forum or to partake in it, on Thursday 15th May, in Parliament contact their Member of Parliament to join them in Committee Room Six on the day.

To find out the MP for your area visit: and for a list of Members of Parliament contact details visit:

We very much hope the 12th May M.E. People’s Events founder and patron, Trev Wainwright will be able to join us at one or both of the events, subject to health and commitments, of course!

The usual “creature-comforts” are highly recommended for both days e.g. extra clothing and waterproofs, fruit, snacks etc. Plenty of refreshments for the duration of the day/s and packed lunches for the Picnic/s are a must.

Mobility scooters and wheelchairs users and anyone who is assisting you are most welcome to both Events. PLEASE NOTE: As a separate entrance to the House of Commons applies to wheelchair and scooter-users (and any assistant) Please make yourself known on arrival to the police officers outside Parliament, who will arrange for a guide to escort you through Security and up to the Committee Room.

Placards of a serious or humorous nature (non-offensive, please!) are welcome to be displayed at the 12th May Gathering, opposite Downing Street. However, please note: NO placards will be allowed at the 15th May House of Commons Event. Thank you!

Kind regards


Di Newman
12th May M.E. People’s Day – 2008 Events


Alternative email address:

Postal Address: PO Box 775 Peterborough, Cambridgeshire PE1 4WZ

Landline: 01733 552 872

Mobile: 07742 615 952

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