May 12th (tomorrow) tel MEWL 020 8543 2356 for more details

Do you, could you, will you? For International ME Awareness Day 2003 (May 12th)

From Trevor Wainwright, Castleford Aid for ME,

Do you think enough is done to raise the profile of ME how terrible it is and the devastating effects it has on ME Sufferers in the UK? Or enough is being done to adequately represent the views and the needs of ME Sufferers in the UK?

If the answer is No please read on

Do you think more could and should be done on a national basis to raise the profile of ME?

*Do you think it is now time for a national epidemiological study followed by aetiological research, both funded by central Government, and that these be addressed before treatment is looked at?*

If the answer is Yes please read on.

Following consultation with the relevant bodies. Castleford Aid for ME has been given permission to hold a demonstration, presentation and lobby in London on May 12th 2003, International ME Awareness Day. Supported by the General, Municipal Boilermakers Union who will be sending a representative.

Format as follows:

12.00 -12.30pm meet for static demonstration outside the Department of Health, Richmond House. Maximum of 700 people.

1.00 pm Presentation to 10 Downing Street ref needs of PWME, letters from sufferers, carers, local surveys, petitions etc. maximum of 6 people for this excluding members of the media

1.30 - 1.45pm the House of Commons to join the Lobby Queue to Lobby the MP's. Maximum 1000 people here Could you attend this event or support it by getting someone to attend on
your behalf or simply by supplying information for the event about what YOU want for ME, *on items such as epidemiology and aetiology*, not what others think you want, *eg more of the same treatment.* Each demonstrator to bring if possible an A4 sheet either stuck to cardboard or laminated containing a photo or silhouette of he person they are representing, a history of there life both before and after the illness, and what they would like to see done on the illness.

Could you supply information about what you really want for yourself as a sufferer or some one you care for *on items such as epidemiology and aetiology*, not what others think you want, *eg more of the same treatment*, to be presented at

10 Downing Street on May 12th 2003?

Could you write to your MP and ask him/her to receive your protest, from you or your representative at the House of Commons on May 12th 2003? They are duty bound to receive this. Already 2 of my local MP's have said they will.

Will you give the above some thought, further details from address below:

Trevor Wainwright Castleford Aid for ME., 92 Lower Oxford Street, Castleford, West Yorkshire, WF10 4AG. Phone 01977 554273 e mail

Also in addition to the GMB Union Tymes Trust is to support the event, as is the 25% Group with more interest shown form other groups.

Yours sincerely

Trevor Wainwright

Castleford Aid for ME


Ed: Are any of us able to go to the above? Hopefully we can add our weight to this event. I had hoped to give more notice of it, but could not get the newsletter out any sooner. Some of you might have heard of it from other sources? I am planning to go myself, but like many will have to take a rain check nearer the day. Perhaps we could phone around to find others (pals) who are considering going and can generate some needed enthusiasm to what could be a momentous occasion. Others have done the organising, we should play our part 020 8543 2356.