Sunday, May 21, 2006

A visit to London, and to Downing Street

We had a fun day on Friday (May 12). Managed to get showered and dressed early, sorted out papers, John got wheelchair out of the car, and I sat in it in the sun while we waited for the cab to arrive. Got to DoH a bit after 10 I think.

The demo outside DoH was small, my guess is around 20, but no more than 12 or so at once. The sun shone, and there wasn't the chilly breeze blowing up from the river that we had the last 2 years. It was nice to see some familiar faces - Gus, Ciaran, Stuart, and meet some new people too.

Some of the more able-bodied (carers) accosted folks as they passed and asked them to sign the petition. A lot of signatures were obtained, from people from all over the world (Downing Street is just across the road and is a popular tourist attraction).

Since I had some copies of the professionally printed copies of the short Canadian Guidelines (which luckily arrived 2 days before we drove to London), John wheeled me into the DoH and I left a copy for the attention of the Chief Medical Officer along with a Co-Cure flyer. Someone said to ask for a receipt, so we did. The girl behind the desk initially tried to refuse to accept the guidelines, but did in the end.

Me at Number 10

I made a presentation of documents from the MEACH Trust to 10 Downing Street. Usually they only let 5 people in through the gates, but since 2 of us were in pushed wheelchairs our carers were able to come in too. After the presentations were made to No 10 we walked (or were pushed!) to the House of Commons. If you are in a wheelchair you don't have to go and queue to get in - there are steps at that entrance. You get to go in at the Members Entrance, and use the Members lifts. Everyone is incredibly helpful and kind. I wish the rest of the country was like that!

The policeman who escorted us to the Lobby said he had a friend with ME, so he was very interested in the demo. He goes round to help her out as much as can, he said she was very up and down with her symptoms - good days and bad days. I gave him one of the short version of the Canadian Guidelines.

The Lobby is wonderful - mosaic ceiling with all the symbols of the UK - roses, daffodils, shamrock, thistle, and patron saints. Amazing floor tiles too, and the chandelier in the centre is gobsmacking!

I was the only person lobbying, my MPs assistant came to meet with us, found a quiet corner and I handed over the papers I'd taken. Another copy of the short Canadian Guidelines too.

Then we went up to Committee room 6, where about 10 of us had a talk about what we might do next year, as May 12 falls on a Saturday. Nothing finally decided, but the suggestion that I think best was that we lobbied on Wednesday (9th) since that's the day of PM's Question Time so most MPs are likely to be there. We talked till about 3.30, then packed up and left. No MPs came to see us. Di Newman's (organiser) MP had said he might be able to but didn't. Met up with Gus and a young man from Peterborough - Steve? outside, Ciaran had come with us in the lift as he can't easily manage stairs.

Walked (me pushed) along to where the IiME conference was on (Insitute of Mechanical Engineering, 1 Birdcage Walk) in hopes we could manage to meet up with Mary Schweitzer when the conference ended. This was more complicated than it might appear, as we haven't met before, so we didn't know if she'd find us. (the hotel said she wasn't staying there when we phoned in the morning)

But John went in to recption and found out that she was registered at the conference and sent in a note, so she at least knew we were there. We all went and sat in St James Park until it became obvious the conference was finishing. I was wondering if Mary would find us - I had one of my Co-Cure flyers laminated, so I had that taped to my walking stick as she would recognise the Co-Cure sign. We saw lots of people come out, but eventually we decided to get a cab home.

Had to cross over to hail cab, as we were waiting a young lady came down the steps from the Institute of Mechanical Engineering. She came up to us (I think she thought we'd been at the conference cos I was in wheelchair)... Turns out she was someone I "met" on the Co-Cure Message Boards! Kate.

She said Mary was still there, went in and found her for us. :-) Kate had met Gus and Ciaron at the last APPG, so went over to have a chat, while we whisked Mary back to Sarah's house in Herne HIll, and we had fish & chips from Olleys (best fish and chips in London).

Mary and me

It was so much fun meeting Mary, I have known her online about 10 years I guess, lovely to put a face to the name. :-) She is on Ampligen, which she has to have infused twice a week. She tried coming off it after the original trial was over, but got much iller again. She said it has given her her brain back. :-)

John, Mary and me again

See that tatty old bench-table in the background? John spent a happy Saturday morning breaking it up into pieces, and retrieving the very heavy duty bolts that held it together.

Mary left for her hotel about 9.30, and I got into bed. Sarah and John were watching Green Wing (taped earlier) and it was funny, but I was so tired I just fell asleep.

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